[Congressional Record (Bound Edition), Volume 151 (2005), Part 2]
[Senate]
[Pages 2488-2517]
[From the U.S. Government Publishing Office, www.gpo.gov]




           GENETIC INFORMATION NONDISCRIMINATION ACT OF 2005

  Mr. ENZI. Mr. President, I ask unanimous consent that the Senate now 
proceed to the consideration of Calendar No. 3, S. 306, the Genetic 
Information Nondiscrimination Act of 2005; provided that there be 90 
minutes of debate equally divided between the chairman and ranking 
member of the HELP committee; provided further that the only amendment 
in order, other than the committee-reported amendment, be a substitute 
which is at the desk, and following the use or yielding back of time 
the substitute amendment be agreed to, the committee-reported 
amendment, as amended, be agreed to, the bill, as amended, be read a 
third time, and the Senate proceed to a vote on passage without any 
intervening action or debate at a time determined by the majority 
leader, after consultation with the Democratic leader.
  The PRESIDING OFFICER. Is there any objection? Without objection, it 
is so ordered.
  The clerk will report the bill by title.
  The assistant legislative clerk read as follows:

       A bill (S. 306) to prohibit discrimination on the basis of 
     genetic information with respect to health insurance and 
     employment.

  The Senate proceeded to consider the bill which had been reported 
from the Committee on Health, Education, Labor, and Pensions with an 
amendment to strike all after the enacting clause and insert in lieu 
thereof the following:
  [Strike the part shown in black brackets and insert the part shown in 
italic.]

                                 S. 306

       Be it enacted by the Senate and House of Representatives of 
     the United States of America in Congress assembled,

     [SECTION 1. SHORT TITLE; TABLE OF CONTENTS.

       [(a) Short Title.--This Act may be cited as the ``Genetic 
     Information Nondiscrimination Act of 2005''.
       [(b) Table of Contents.--The table of contents of this Act 
     is as follows:

[Sec. 1. Short title; table of contents.
[Sec. 2. Findings.

        [TITLE I--GENETIC NONDISCRIMINATION IN HEALTH INSURANCE

[Sec. 101. Amendments to Employee Retirement Income Security Act of 
              1974.
[Sec. 102. Amendments to the Public Health Service Act.
[Sec. 103. Amendments to the Internal Revenue Code of 1986.
[Sec. 104. Amendments to title XVIII of the Social Security Act 
              relating to medigap.
[Sec. 105. Privacy and confidentiality.
[Sec. 106. Assuring coordination.
[Sec. 107. Regulations; effective date.

   [TITLE II--PROHIBITING EMPLOYMENT DISCRIMINATION ON THE BASIS OF 
                          GENETIC INFORMATION

[Sec. 201. Definitions.
[Sec. 202. Employer practices.
[Sec. 203. Employment agency practices.
[Sec. 204. Labor organization practices.
[Sec. 205. Training programs.
[Sec. 206. Confidentiality of genetic information.
[Sec. 207. Remedies and enforcement.
[Sec. 208. Disparate impact.
[Sec. 209. Construction.
[Sec. 210. Medical information that is not genetic information.
[Sec. 211. Regulations.
[Sec. 212. Authorization of appropriations.
[Sec. 213. Effective date.

                  [TITLE III--MISCELLANEOUS PROVISION

[Sec. 301. Severability.

     [SEC. 2. FINDINGS.

       [Congress makes the following findings:
       [(1) Deciphering the sequence of the human genome and other 
     advances in genetics open major new opportunities for medical 
     progress. New knowledge about the genetic basis of illness 
     will allow for earlier detection of illnesses, often before 
     symptoms have

[[Page 2489]]

     begun. Genetic testing can allow individuals to take steps to 
     reduce the likelihood that they will contract a particular 
     disorder. New knowledge about genetics may allow for the 
     development of better therapies that are more effective 
     against disease or have fewer side effects than current 
     treatments. These advances give rise to the potential misuse 
     of genetic information to discriminate in health insurance 
     and employment.
       [(2) The early science of genetics became the basis of 
     State laws that provided for the sterilization of persons 
     having presumed genetic ``defects'' such as mental 
     retardation, mental disease, epilepsy, blindness, and hearing 
     loss, among other conditions. The first sterilization law was 
     enacted in the State of Indiana in 1907. By 1981, a majority 
     of States adopted sterilization laws to ``correct'' apparent 
     genetic traits or tendencies. Many of these State laws have 
     since been repealed, and many have been modified to include 
     essential constitutional requirements of due process and 
     equal protection. However, the current explosion in the 
     science of genetics, and the history of sterilization laws by 
     the States based on early genetic science, compels 
     Congressional action in this area.
       [(3) Although genes are facially neutral markers, many 
     genetic conditions and disorders are associated with 
     particular racial and ethnic groups and gender. Because some 
     genetic traits are most prevalent in particular groups, 
     members of a particular group may be stigmatized or 
     discriminated against as a result of that genetic 
     information. This form of discrimination was evident in the 
     1970s, which saw the advent of programs to screen and 
     identify carriers of sickle cell anemia, a disease which 
     afflicts African-Americans. Once again, State legislatures 
     began to enact discriminatory laws in the area, and in the 
     early 1970s began mandating genetic screening of all African 
     Americans for sickle cell anemia, leading to discrimination 
     and unnecessary fear. To alleviate some of this stigma, 
     Congress in 1972 passed the National Sickle Cell Anemia 
     Control Act, which withholds Federal funding from States 
     unless sickle cell testing is voluntary.
       [(4) Congress has been informed of examples of genetic 
     discrimination in the workplace. These include the use of 
     pre-employment genetic screening at Lawrence Berkeley 
     Laboratory, which led to a court decision in favor of the 
     employees in that case Norman-Bloodsaw v. Lawrence Berkeley 
     Laboratory (135 F.3d 1260, 1269 (9th Cir. 1998)). Congress 
     clearly has a compelling public interest in relieving the 
     fear of discrimination and in prohibiting its actual practice 
     in employment and health insurance.
       [(5) Federal law addressing genetic discrimination in 
     health insurance and employment is incomplete in both the 
     scope and depth of its protections. Moreover, while many 
     States have enacted some type of genetic non-discrimination 
     law, these laws vary widely with respect to their approach, 
     application, and level of protection. Congress has collected 
     substantial evidence that the American public and the medical 
     community find the existing patchwork of State and Federal 
     laws to be confusing and inadequate to protect them from 
     discrimination. Therefore Federal legislation establishing a 
     national and uniform basic standard is necessary to fully 
     protect the public from discrimination and allay their 
     concerns about the potential for discrimination, thereby 
     allowing individuals to take advantage of genetic testing, 
     technologies, research, and new therapies.
        [TITLE I--GENETIC NONDISCRIMINATION IN HEALTH INSURANCE

     [SEC. 101. AMENDMENTS TO EMPLOYEE RETIREMENT INCOME SECURITY 
                   ACT OF 1974.

       [(a) Prohibition of Health Discrimination on the Basis of 
     Genetic Information or Genetic Services.--
       [(1) No enrollment restriction for genetic services.--
     Section 702(a)(1)(F) of the Employee Retirement Income 
     Security Act of 1974 (29 U.S.C. 1182(a)(1)(F)) is amended by 
     inserting before the period the following: ``(including 
     information about a request for or receipt of genetic 
     services by an individual or family member of such 
     individual)''.
       [(2) No discrimination in group premiums based on genetic 
     information.--Section 702(b) of the Employee Retirement 
     Income Security Act of 1974 (29 U.S.C. 1182(b)) is amended--
       [(A) in paragraph (2)(A), by inserting before the semicolon 
     the following: ``except as provided in paragraph (3)''; and
       [(B) by adding at the end the following:
       [``(3) No discrimination in group premiums based on genetic 
     information.--For purposes of this section, a group health 
     plan, or a health insurance issuer offering group health 
     insurance coverage in connection with a group health plan, 
     shall not adjust premium or contribution amounts for a group 
     on the basis of genetic information concerning an individual 
     in the group or a family member of the individual (including 
     information about a request for or receipt of genetic 
     services by an individual or family member of such 
     individual).''.
       [(b) Limitations on Genetic Testing.--Section 702 of the 
     Employee Retirement Income Security Act of 1974 (29 U.S.C. 
     1182) is amended by adding at the end the following:
       [``(c) Genetic Testing.--
       [``(1) Limitation on requesting or requiring genetic 
     testing.--A group health plan, or a health insurance issuer 
     offering health insurance coverage in connection with a group 
     health plan, shall not request or require an individual or a 
     family member of such individual to undergo a genetic test.
       [``(2) Rule of construction.--Nothing in this part shall be 
     construed to--
       [``(A) limit the authority of a health care professional 
     who is providing health care services with respect to an 
     individual to request that such individual or a family member 
     of such individual undergo a genetic test;
       [``(B) limit the authority of a health care professional 
     who is employed by or affiliated with a group health plan or 
     a health insurance issuer and who is providing health care 
     services to an individual as part of a bona fide wellness 
     program to notify such individual of the availability of a 
     genetic test or to provide information to such individual 
     regarding such genetic test; or
       [``(C) authorize or permit a health care professional to 
     require that an individual undergo a genetic test.
       [``(d) Application to All Plans.--The provisions of 
     subsections (a)(1)(F), (b)(3), and (c) shall apply to group 
     health plans and health insurance issuers without regard to 
     section 732(a).''.
       [(c) Remedies and Enforcement.--Section 502 of the Employee 
     Retirement Income Security Act of 1974 (29 U.S.C. 1132) is 
     amended by adding at the end the following:
       [``(n) Enforcement of Genetic Nondiscrimination 
     Requirements.--
       [``(1) Injunctive relief for irreparable harm.--With 
     respect to any violation of subsection (a)(1)(F), (b)(3), or 
     (c) of section 702, a participant or beneficiary may seek 
     relief under subsection 502(a)(1)(B) prior to the exhaustion 
     of available administrative remedies under section 503 if it 
     is demonstrated to the court, by a preponderance of the 
     evidence, that the exhaustion of such remedies would cause 
     irreparable harm to the health of the participant or 
     beneficiary. Any determinations that already have been made 
     under section 503 in such case, or that are made in such case 
     while an action under this paragraph is pending, shall be 
     given due consideration by the court in any action under this 
     subsection in such case.
       [``(2) Equitable relief for genetic nondiscrimination.--
       [``(A) Reinstatement of benefits where equitable relief has 
     been awarded.--The recovery of benefits by a participant or 
     beneficiary under a civil action under this section may 
     include an administrative penalty under subparagraph (B) and 
     the retroactive reinstatement of coverage under the plan 
     involved to the date on which the participant or beneficiary 
     was denied eligibility for coverage if--
       [``(i) the civil action was commenced under subsection 
     (a)(1)(B); and
       [``(ii) the denial of coverage on which such civil action 
     was based constitutes a violation of subsection (a)(1)(F), 
     (b)(3), or (c) of section 702.
       [``(B) Administrative penalty.--
       [``(i) In general.--An administrator who fails to comply 
     with the requirements of subsection (a)(1)(F), (b)(3), or (c) 
     of section 702 with respect to a participant or beneficiary 
     may, in an action commenced under subsection (a)(1)(B), be 
     personally liable in the discretion of the court, for a 
     penalty in the amount not more than $100 for each day in the 
     noncompliance period.
       [``(ii) Noncompliance period.--For purposes of clause (i), 
     the term `noncompliance period' means the period--

       [``(I) beginning on the date that a failure described in 
     clause (i) occurs; and
       [``(II) ending on the date that such failure is corrected.

       [``(iii) Payment to participant or beneficiary.--A penalty 
     collected under this subparagraph shall be paid to the 
     participant or beneficiary involved.
       [``(3) Secretarial enforcement authority.--
       [``(A) General rule.--The Secretary has the authority to 
     impose a penalty on any failure of a group health plan to 
     meet the requirements of subsection (a)(1)(F), (b)(3), or (c) 
     of section 702.
       [``(B) Amount.--
       [``(i) In general.--The amount of the penalty imposed by 
     subparagraph (A) shall be $100 for each day in the 
     noncompliance period with respect to each individual to whom 
     such failure relates.
       [``(ii) Noncompliance period.--For purposes of this 
     paragraph, the term `noncompliance period' means, with 
     respect to any failure, the period--

       [``(I) beginning on the date such failure first occurs; and
       [``(II) ending on the date such failure is corrected.

       [``(C) Minimum penalties where failure discovered.--
     Notwithstanding clauses (i) and (ii) of subparagraph (D):
       [``(i) In general.--In the case of 1 or more failures with 
     respect to an individual--

       [``(I) which are not corrected before the date on which the 
     plan receives a notice from the Secretary of such violation; 
     and
       [``(II) which occurred or continued during the period 
     involved;


[[Page 2490]]



     the amount of penalty imposed by subparagraph (A) by reason 
     of such failures with respect to such individual shall not be 
     less than $2,500.
       [``(ii) Higher minimum penalty where violations are more 
     than de minimis.--To the extent violations for which any 
     person is liable under this paragraph for any year are more 
     than de minimis, clause (i) shall be applied by substituting 
     `$15,000' for `$2,500' with respect to such person.
       [``(D) Limitations.--
       [``(i) Penalty not to apply where failure not discovered 
     exercising reasonable diligence.--No penalty shall be imposed 
     by subparagraph (A) on any failure during any period for 
     which it is established to the satisfaction of the Secretary 
     that the person otherwise liable for such penalty did not 
     know, and exercising reasonable diligence would not have 
     known, that such failure existed.
       [``(ii) Penalty not to apply to failures corrected within 
     certain periods.--No penalty shall be imposed by subparagraph 
     (A) on any failure if--

       [``(I) such failure was due to reasonable cause and not to 
     willful neglect; and
       [``(II) such failure is corrected during the 30-day period 
     beginning on the first date the person otherwise liable for 
     such penalty knew, or exercising reasonable diligence would 
     have known, that such failure existed.

       [``(iii) Overall limitation for unintentional failures.--In 
     the case of failures which are due to reasonable cause and 
     not to willful neglect, the penalty imposed by subparagraph 
     (A) for failures shall not exceed the amount equal to the 
     lesser of--

       [``(I) 10 percent of the aggregate amount paid or incurred 
     by the employer (or predecessor employer) during the 
     preceding taxable year for group health plans; or
       [``(II) $500,000.

       [``(E) Waiver by secretary.--In the case of a failure which 
     is due to reasonable cause and not to willful neglect, the 
     Secretary may waive part or all of the penalty imposed by 
     subparagraph (A) to the extent that the payment of such 
     penalty would be excessive relative to the failure 
     involved.''.
       [(d) Definitions.--Section 733(d) of the Employee 
     Retirement Income Security Act of 1974 (29 U.S.C. 1191b(d)) 
     is amended by adding at the end the following:
       [``(5) Family member.--The term `family member' means with 
     respect to an individual--
       [``(A) the spouse of the individual;
       [``(B) a dependent child of the individual, including a 
     child who is born to or placed for adoption with the 
     individual; and
       [``(C) all other individuals related by blood to the 
     individual or the spouse or child described in subparagraph 
     (A) or (B).
       [``(6) Genetic information.--
       [``(A) In general.--Except as provided in subparagraph (B), 
     the term `genetic information' means information about--
       [``(i) an individual's genetic tests;
       [``(ii) the genetic tests of family members of the 
     individual; or
       [``(iii) the occurrence of a disease or disorder in family 
     members of the individual.
       [``(B) Exclusions.--The term `genetic information' shall 
     not include information about the sex or age of an 
     individual.
       [``(7) Genetic test.--
       [``(A) In general.--The term `genetic test' means an 
     analysis of human DNA, RNA, chromosomes, proteins, or 
     metabolites, that detects genotypes, mutations, or 
     chromosomal changes.
       [``(B) Exceptions.--The term `genetic test' does not mean--
       [``(i) an analysis of proteins or metabolites that does not 
     detect genotypes, mutations, or chromosomal changes; or
       [``(ii) an analysis of proteins or metabolites that is 
     directly related to a manifested disease, disorder, or 
     pathological condition that could reasonably be detected by a 
     health care professional with appropriate training and 
     expertise in the field of medicine involved.
       [``(8) Genetic services.--The term `genetic services' 
     means--
       [``(A) a genetic test;
       [``(B) genetic counseling (such as obtaining, interpreting, 
     or assessing genetic information); or
       [``(C) genetic education.''.
       [(e) Regulations and Effective Date.--
       [(1) Regulations.--Not later than 1 year after the date of 
     enactment of this title, the Secretary of Labor shall issue 
     final regulations in an accessible format to carry out the 
     amendments made by this section.
       [(2) Effective date.--The amendments made by this section 
     shall apply with respect to group health plans for plan years 
     beginning after the date that is 18 months after the date of 
     enactment of this title.

     [SEC. 102. AMENDMENTS TO THE PUBLIC HEALTH SERVICE ACT.

       [(a) Amendments Relating to the Group Market.--
       [(1) Prohibition of health discrimination on the basis of 
     genetic information or genetic services.--
       [(A) No enrollment restriction for genetic services.--
     Section 2702(a)(1)(F) of the Public Health Service Act (42 
     U.S.C. 300gg-1(a)(1)(F)) is amended by inserting before the 
     period the following: ``(including information about a 
     request for or receipt of genetic services by an individual 
     or family member of such individual)''.
       [(B) No discrimination in group premiums based on genetic 
     information.--Section 2702(b) of the Public Health Service 
     Act (42 U.S.C. 300gg-1(b)) is amended--
       [(i) in paragraph (2)(A), by inserting before the semicolon 
     the following: ``, except as provided in paragraph (3)''; and
       [(ii) by adding at the end the following:
       [``(3) No discrimination in group premiums based on genetic 
     information.--For purposes of this section, a group health 
     plan, or a health insurance issuer offering group health 
     insurance coverage in connection with a group health plan, 
     shall not adjust premium or contribution amounts for a group 
     on the basis of genetic information concerning an individual 
     in the group or a family member of the individual (including 
     information about a request for or receipt of genetic 
     services by an individual or family member of such 
     individual).''.
       [(2) Limitations on genetic testing.--Section 2702 of the 
     Public Health Service Act (42 U.S.C. 300gg-1) is amended by 
     adding at the end the following:
       [``(c) Genetic Testing.--
       [``(1) Limitation on requesting or requiring genetic 
     testing.--A group health plan, or a health insurance issuer 
     offering health insurance coverage in connection with a group 
     health plan, shall not request or require an individual or a 
     family member of such individual to undergo a genetic test.
       [``(2) Rule of construction.--Nothing in this part shall be 
     construed to--
       [``(A) limit the authority of a health care professional 
     who is providing health care services with respect to an 
     individual to request that such individual or a family member 
     of such individual undergo a genetic test;
       [``(B) limit the authority of a health care professional 
     who is employed by or affiliated with a group health plan or 
     a health insurance issuer and who is providing health care 
     services to an individual as part of a bona fide wellness 
     program to notify such individual of the availability of a 
     genetic test or to provide information to such individual 
     regarding such genetic test; or
       [``(C) authorize or permit a health care professional to 
     require that an individual undergo a genetic test.
       [``(d) Application to All Plans.--The provisions of 
     subsections (a)(1)(F), (b)(3), and (c) shall apply to group 
     health plans and health insurance issuers without regard to 
     section 2721(a).''.
       [(3) Remedies and enforcement.--Section 2722(b) of the 
     Public Health Service Act (42 U.S.C. 300gg-22)(b)) is amended 
     by adding at the end the following:
       [``(3) Enforcement authority relating to genetic 
     discrimination.--
       [``(A) General rule.--In the cases described in paragraph 
     (1), notwithstanding the provisions of paragraph (2)(C), the 
     following provisions shall apply with respect to an action 
     under this subsection by the Secretary with respect to any 
     failure of a health insurance issuer in connection with a 
     group health plan, to meet the requirements of subsection 
     (a)(1)(F), (b)(3), or (c) of section 2702.
       [``(B) Amount.--
       [``(i) In general.--The amount of the penalty imposed under 
     this paragraph shall be $100 for each day in the 
     noncompliance period with respect to each individual to whom 
     such failure relates.
       [``(ii) Noncompliance period.--For purposes of this 
     paragraph, the term `noncompliance period' means, with 
     respect to any failure, the period--

       [``(I) beginning on the date such failure first occurs; and
       [``(II) ending on the date such failure is corrected.

       [``(C) Minimum penalties where failure discovered.--
     Notwithstanding clauses (i) and (ii) of subparagraph (D):
       [``(i) In general.--In the case of 1 or more failures with 
     respect to an individual--

       [``(I) which are not corrected before the date on which the 
     plan receives a notice from the Secretary of such violation; 
     and
       [``(II) which occurred or continued during the period 
     involved;

     the amount of penalty imposed by subparagraph (A) by reason 
     of such failures with respect to such individual shall not be 
     less than $2,500.
       [``(ii) Higher minimum penalty where violations are more 
     than de minimis.--To the extent violations for which any 
     person is liable under this paragraph for any year are more 
     than de minimis, clause (i) shall be applied by substituting 
     `$15,000' for `$2,500' with respect to such person.
       [``(D) Limitations.--
       [``(i) Penalty not to apply where failure not discovered 
     exercising reasonable diligence.--No penalty shall be imposed 
     by subparagraph (A) on any failure during any period for 
     which it is established to the satisfaction of the Secretary 
     that the person otherwise liable for such penalty did not 
     know, and exercising reasonable diligence would not have 
     known, that such failure existed.
       [``(ii) Penalty not to apply to failures corrected within 
     certain periods.--No penalty shall be imposed by subparagraph 
     (A) on any failure if--

       [``(I) such failure was due to reasonable cause and not to 
     willful neglect; and
       [``(II) such failure is corrected during the 30-day period 
     beginning on the first date the

[[Page 2491]]

     person otherwise liable for such penalty knew, or exercising 
     reasonable diligence would have known, that such failure 
     existed.

       [``(iii) Overall limitation for unintentional failures.--In 
     the case of failures which are due to reasonable cause and 
     not to willful neglect, the penalty imposed by subparagraph 
     (A) for failures shall not exceed the amount equal to the 
     lesser of--

       [``(I) 10 percent of the aggregate amount paid or incurred 
     by the employer (or predecessor employer) during the 
     preceding taxable year for group health plans; or
       [``(II) $500,000.

       [``(E) Waiver by secretary.--In the case of a failure which 
     is due to reasonable cause and not to willful neglect, the 
     Secretary may waive part or all of the penalty imposed by 
     subparagraph (A) to the extent that the payment of such 
     penalty would be excessive relative to the failure 
     involved.''.
       [(4) Definitions.--Section 2791(d) of the Public Health 
     Service Act (42 U.S.C. 300gg-91(d)) is amended by adding at 
     the end the following:
       [``(15) Family member.--The term `family member' means with 
     respect to an individual--
       [``(A) the spouse of the individual;
       [``(B) a dependent child of the individual, including a 
     child who is born to or placed for adoption with the 
     individual; and
       [``(C) all other individuals related by blood to the 
     individual or the spouse or child described in subparagraph 
     (A) or (B).
       [``(16) Genetic information.--
       [``(A) In general.--Except as provided in subparagraph (B), 
     the term `genetic information' means information about--
       [``(i) an individual's genetic tests;
       [``(ii) the genetic tests of family members of the 
     individual; or
       [``(iii) the occurrence of a disease or disorder in family 
     members of the individual.
       [``(B) Exclusions.--The term `genetic information' shall 
     not include information about the sex or age of an 
     individual.
       [``(17) Genetic test.--
       [``(A) In general.--The term `genetic test' means an 
     analysis of human DNA, RNA, chromosomes, proteins, or 
     metabolites, that detects genotypes, mutations, or 
     chromosomal changes.
       [``(B) Exceptions.--The term `genetic test' does not mean--
       [``(i) an analysis of proteins or metabolites that does not 
     detect genotypes, mutations, or chromosomal changes; or
       [``(ii) an analysis of proteins or metabolites that is 
     directly related to a manifested disease, disorder, or 
     pathological condition that could reasonably be detected by a 
     health care professional with appropriate training and 
     expertise in the field of medicine involved.
       [``(18) Genetic services.--The term `genetic services' 
     means--
       [``(A) a genetic test;
       [``(B) genetic counseling (such as obtaining, interpreting, 
     or assessing genetic information); or
       [``(C) genetic education.''.
       [(b) Amendment Relating to the Individual Market.--
       [(1) In general.--The first subpart 3 of part B of title 
     XXVII of the Public Health Service Act (42 U.S.C. 300gg-51 et 
     seq.) (relating to other requirements) is amended--
       [(A) by redesignating such subpart as subpart 2; and
       [(B) by adding at the end the following:

     [``SEC. 2753. PROHIBITION OF HEALTH DISCRIMINATION ON THE 
                   BASIS OF GENETIC INFORMATION.

       [``(a) Prohibition on Genetic Information as a Condition of 
     Eligibility.--A health insurance issuer offering health 
     insurance coverage in the individual market may not establish 
     rules for the eligibility (including continued eligibility) 
     of any individual to enroll in individual health insurance 
     coverage based on genetic information (including information 
     about a request for or receipt of genetic services by an 
     individual or family member of such individual).
       [``(b) Prohibition on Genetic Information in Setting 
     Premium Rates.--A health insurance issuer offering health 
     insurance coverage in the individual market shall not adjust 
     premium or contribution amounts for an individual on the 
     basis of genetic information concerning the individual or a 
     family member of the individual (including information about 
     a request for or receipt of genetic services by an individual 
     or family member of such individual).
       [``(c) Genetic Testing.--
       [``(1) Limitation on requesting or requiring genetic 
     testing.--A health insurance issuer offering health insurance 
     coverage in the individual market shall not request or 
     require an individual or a family member of such individual 
     to undergo a genetic test.
       [``(2) Rule of construction.--Nothing in this part shall be 
     construed to--
       [``(A) limit the authority of a health care professional 
     who is providing health care services with respect to an 
     individual to request that such individual or a family member 
     of such individual undergo a genetic test;
       [``(B) limit the authority of a health care professional 
     who is employed by or affiliated with a health insurance 
     issuer and who is providing health care services to an 
     individual as part of a bona fide wellness program to notify 
     such individual of the availability of a genetic test or to 
     provide information to such individual regarding such genetic 
     test; or
       [``(C) authorize or permit a health care professional to 
     require that an individual undergo a genetic test.''.
       [(2) Remedies and enforcement.--Section 2761(b) of the 
     Public Health Service Act (42 U.S.C. 300gg-61)(b)) is amended 
     to read as follows:
       [``(b) Secretarial Enforcement Authority.--The Secretary 
     shall have the same authority in relation to enforcement of 
     the provisions of this part with respect to issuers of health 
     insurance coverage in the individual market in a State as the 
     Secretary has under section 2722(b)(2), and section 
     2722(b)(3) with respect to violations of genetic 
     nondiscrimination provisions, in relation to the enforcement 
     of the provisions of part A with respect to issuers of health 
     insurance coverage in the small group market in the State.''.
       [(c) Elimination of Option of Non-Federal Governmental 
     Plans to Be Excepted From Requirements Concerning Genetic 
     Information.--Section 2721(b)(2) of the Public Health Service 
     Act (42 U.S. C. 300gg-21(b)(2)) is amended--
       [(1) in subparagraph (A), by striking ``If the plan 
     sponsor'' and inserting ``Except as provided in subparagraph 
     (D), if the plan sponsor''; and
       [(2) by adding at the end the following:
       [``(D) Election not applicable to requirements concerning 
     genetic information.--The election described in subparagraph 
     (A) shall not be available with respect to the provisions of 
     subsections (a)(1)(F) and (c) of section 2702 and the 
     provisions of section 2702(b) to the extent that such 
     provisions apply to genetic information (or information about 
     a request for or the receipt of genetic services by an 
     individual or a family member of such individual).''.
       [(d) Regulations and Effective Date.--
       [(1) Regulations.--Not later than 1 year after the date of 
     enactment of this title, the Secretary of Labor and the 
     Secretary of Health and Human Services (as the case may be) 
     shall issue final regulations in an accessible format to 
     carry out the amendments made by this section.
       [(2) Effective date.--The amendments made by this section 
     shall apply--
       [(A) with respect to group health plans, and health 
     insurance coverage offered in connection with group health 
     plans, for plan years beginning after the date that is 18 
     months after the date of enactment of this title; and
       [(B) with respect to health insurance coverage offered, 
     sold, issued, renewed, in effect, or operated in the 
     individual market after the date that is 18 months after the 
     date of enactment of this title.

     [SEC. 103. AMENDMENTS TO THE INTERNAL REVENUE CODE OF 1986.

       [(a) Prohibition of Health Discrimination on the Basis of 
     Genetic Information or Genetic Services.--
       [(1) No enrollment restriction for genetic services.--
     Section 9802(a)(1)(F) of the Internal Revenue Code of 1986 is 
     amended by inserting before the period the following: 
     ``(including information about a request for or receipt of 
     genetic services by an individual or family member of such 
     individual)''.
       [(2) No discrimination in group premiums based on genetic 
     information.--Section 9802(b) of the Internal Revenue Code of 
     1986 is amended--
       [(A) in paragraph (2)(A), by inserting before the semicolon 
     the following: ``, except as provided in paragraph (3)''; and
       [(B) by adding at the end the following:
       [``(3) No discrimination in group premiums based on genetic 
     information.--For purposes of this section, a group health 
     plan shall not adjust premium or contribution amounts for a 
     group on the basis of genetic information concerning an 
     individual in the group or a family member of the individual 
     (including information about a request for or receipt of 
     genetic services by an individual or family member of such 
     individual).''.
       [(b) Limitations on Genetic Testing.--Section 9802 of the 
     Internal Revenue Code of 1986 is amended by adding at the end 
     the following:
       [``(d) Genetic Testing and Genetic Services.--
       [``(1) Limitation on requesting or requiring genetic 
     testing.--A group health plan shall not request or require an 
     individual or a family member of such individual to undergo a 
     genetic test.
       [``(2) Rule of construction.--Nothing in this part shall be 
     construed to--
       [``(A) limit the authority of a health care professional 
     who is providing health care services with respect to an 
     individual to request that such individual or a family member 
     of such individual undergo a genetic test;
       [``(B) limit the authority of a health care professional 
     who is employed by or affiliated with a group health plan and 
     who is providing health care services to an individual as 
     part of a bona fide wellness program to notify such 
     individual of the availability of a genetic test or to 
     provide information to such individual regarding such genetic 
     test; or

[[Page 2492]]

       [``(C) authorize or permit a health care professional to 
     require that an individual undergo a genetic test.
       [``(e) Application to All Plans.--The provisions of 
     subsections (a)(1)(F), (b)(3), and (d) shall apply to group 
     health plans and health insurance issuers without regard to 
     section 9831(a)(2).''.
       [(c) Definitions.--Section 9832(d) of the Internal Revenue 
     Code of 1986 is amended by adding at the end the following:
       [``(6) Family member.--The term `family member' means with 
     respect to an individual--
       [``(A) the spouse of the individual;
       [``(B) a dependent child of the individual, including a 
     child who is born to or placed for adoption with the 
     individual; and
       [``(C) all other individuals related by blood to the 
     individual or the spouse or child described in subparagraph 
     (A) or (B).
       [``(7) Genetic services.--The term `genetic services' 
     means--
       [``(A) a genetic test;
       [``(B) genetic counseling (such as obtaining, interpreting, 
     or assessing genetic information); or
       [``(C) genetic education.
       [``(8) Genetic information.--
       [``(A) In general.--Except as provided in subparagraph (B), 
     the term `genetic information' means information about--
       [``(i) an individual's genetic tests;
       [``(ii) the genetic tests of family members of the 
     individual; or
       [``(iii) the occurrence of a disease or disorder in family 
     members of the individual.
       [``(B) Exclusions.--The term `genetic information' shall 
     not include information about the sex or age of an 
     individual.
       [``(9) Genetic test.--
       [``(A) In general.--The term `genetic test' means an 
     analysis of human DNA, RNA, chromosomes, proteins, or 
     metabolites, that detects genotypes, mutations, or 
     chromosomal changes.
       [``(B) Exceptions.--The term `genetic test' does not mean--
       [``(i) an analysis of proteins or metabolites that does not 
     detect genotypes, mutations, or chromosomal changes; or
       [``(ii) an analysis of proteins or metabolites that is 
     directly related to a manifested disease, disorder, or 
     pathological condition that could reasonably be detected by a 
     health care professional with appropriate training and 
     expertise in the field of medicine involved.''.
       [(d) Regulations and Effective Date.--
       [(1) Regulations.--Not later than 1 year after the date of 
     enactment of this title, the Secretary of the Treasury shall 
     issue final regulations in an accessible format to carry out 
     the amendments made by this section.
       [(2) Effective date.--The amendments made by this section 
     shall apply with respect to group health plans for plan years 
     beginning after the date that is 18 months after the date of 
     enactment of this title.

     [SEC. 104. AMENDMENTS TO TITLE XVIII OF THE SOCIAL SECURITY 
                   ACT RELATING TO MEDIGAP.

       [(a) Nondiscrimination.--
       [(1) In general.--Section 1882(s)(2) of the Social Security 
     Act (42 U.S.C. 1395ss(s)(2)) is amended by adding at the end 
     the following:
       [``(E)(i) An issuer of a medicare supplemental policy shall 
     not deny or condition the issuance or effectiveness of the 
     policy, and shall not discriminate in the pricing of the 
     policy (including the adjustment of premium rates) of an 
     eligible individual on the basis of genetic information 
     concerning the individual (or information about a request 
     for, or the receipt of, genetic services by such individual 
     or family member of such individual).
       [``(ii) For purposes of clause (i), the terms `family 
     member', `genetic services', and `genetic information' shall 
     have the meanings given such terms in subsection (v).''.
       [(2) Effective date.--The amendment made by paragraph (1) 
     shall apply with respect to a policy for policy years 
     beginning after the date that is 18 months after the date of 
     enactment of this Act.
       [(b) Limitations on Genetic Testing.--
       [(1) In general.--Section 1882 of the Social Security Act 
     (42 U.S.C. 1395ss) is amended by adding at the end the 
     following:
       [``(v) Limitations on Genetic Testing.--
       [``(1) Genetic testing.--
       [``(A) Limitation on requesting or requiring genetic 
     testing.--An issuer of a medicare supplemental policy shall 
     not request or require an individual or a family member of 
     such individual to undergo a genetic test.
       [``(B) Rule of construction.--Nothing in this title shall 
     be construed to--
       [``(i) limit the authority of a health care professional 
     who is providing health care services with respect to an 
     individual to request that such individual or a family member 
     of such individual undergo a genetic test;
       [``(ii) limit the authority of a health care professional 
     who is employed by or affiliated with an issuer of a medicare 
     supplemental policy and who is providing health care services 
     to an individual as part of a bona fide wellness program to 
     notify such individual of the availability of a genetic test 
     or to provide information to such individual regarding such 
     genetic test; or
       [``(iii) authorize or permit a health care professional to 
     require that an individual undergo a genetic test.
       [``(2) Definitions.--In this subsection:
       [``(A) Family member.--The term `family member' means with 
     respect to an individual--
       [``(i) the spouse of the individual;
       [``(ii) a dependent child of the individual, including a 
     child who is born to or placed for adoption with the 
     individual; or
       [``(iii) any other individuals related by blood to the 
     individual or to the spouse or child described in clause (i) 
     or (ii).
       [``(B) Genetic information.--
       [``(i) In general.--Except as provided in clause (ii), the 
     term `genetic information' means information about--

       [``(I) an individual's genetic tests;
       [``(II) the genetic tests of family members of the 
     individual; or
       [``(III) the occurrence of a disease or disorder in family 
     members of the individual.

       [``(ii) Exclusions.--The term `genetic information' shall 
     not include information about the sex or age of an 
     individual.
       [``(C) Genetic test.--
       [``(i) In general.--The term `genetic test' means an 
     analysis of human DNA, RNA, chromosomes, proteins, or 
     metabolites, that detects genotypes, mutations, or 
     chromosomal changes.
       [``(ii) Exceptions.--The term `genetic test' does not 
     mean--

       [``(I) an analysis of proteins or metabolites that does not 
     detect genotypes, mutations, or chromosomal changes; or
       [``(II) an analysis of proteins or metabolites that is 
     directly related to a manifested disease, disorder, or 
     pathological condition that could reasonably be detected by a 
     health care professional with appropriate training and 
     expertise in the field of medicine involved.

       [``(D) Genetic services.--The term `genetic services' 
     means--
       [``(i) a genetic test;
       [``(ii) genetic counseling (such as obtaining, 
     interpreting, or assessing genetic information); or
       [``(iii) genetic education.
       [``(E) Issuer of a medicare supplemental policy.--The term 
     `issuer of a medicare supplemental policy' includes a third-
     party administrator or other person acting for or on behalf 
     of such issuer.''.
       [(2) Conforming amendment.--Section 1882(o) of the Social 
     Security Act (42 U.S.C. 1395ss(o)) is amended by adding at 
     the end the following:
       [``(4) The issuer of the medicare supplemental policy 
     complies with subsection (s)(2)(E) and subsection (v).''.
       [(3) Effective date.--The amendments made by this 
     subsection shall apply with respect to an issuer of a 
     medicare supplemental policy for policy years beginning on or 
     after the date that is 18 months after the date of enactment 
     of this Act.
       [(c) Transition Provisions.--
       [(1) In general.--If the Secretary of Health and Human 
     Services identifies a State as requiring a change to its 
     statutes or regulations to conform its regulatory program to 
     the changes made by this section, the State regulatory 
     program shall not be considered to be out of compliance with 
     the requirements of section 1882 of the Social Security Act 
     due solely to failure to make such change until the date 
     specified in paragraph (4).
       [(2) NAIC standards.--If, not later than June 30, 2006, the 
     National Association of Insurance Commissioners (in this 
     subsection referred to as the ``NAIC'') modifies its NAIC 
     Model Regulation relating to section 1882 of the Social 
     Security Act (referred to in such section as the 1991 NAIC 
     Model Regulation, as subsequently modified) to conform to the 
     amendments made by this section, such revised regulation 
     incorporating the modifications shall be considered to be the 
     applicable NAIC model regulation (including the revised NAIC 
     model regulation and the 1991 NAIC Model Regulation) for the 
     purposes of such section.
       [(3) Secretary standards.--If the NAIC does not make the 
     modifications described in paragraph (2) within the period 
     specified in such paragraph, the Secretary of Health and 
     Human Services shall, not later than October 1, 2006, make 
     the modifications described in such paragraph and such 
     revised regulation incorporating the modifications shall be 
     considered to be the appropriate regulation for the purposes 
     of such section.
       [(4) Date specified.--
       [(A) In general.--Subject to subparagraph (B), the date 
     specified in this paragraph for a State is the earlier of--
       [(i) the date the State changes its statutes or regulations 
     to conform its regulatory program to the changes made by this 
     section, or
       [(ii) October 1, 2006.
       [(B) Additional legislative action required.--In the case 
     of a State which the Secretary identifies as--
       [(i) requiring State legislation (other than legislation 
     appropriating funds) to conform its regulatory program to the 
     changes made in this section, but
       [(ii) having a legislature which is not scheduled to meet 
     in 2006 in a legislative session in which such legislation 
     may be considered, the date specified in this paragraph is 
     the first day of the first calendar quarter beginning after 
     the close of the first legislative session of the State 
     legislature that begins

[[Page 2493]]

     on or after July 1, 2006. For purposes of the previous 
     sentence, in the case of a State that has a 2-year 
     legislative session, each year of such session shall be 
     deemed to be a separate regular session of the State 
     legislature.

     [SEC. 105. PRIVACY AND CONFIDENTIALITY.

       [(a) Applicability.--Except as provided in subsection (d), 
     the provisions of this section shall apply to group health 
     plans, health insurance issuers (including issuers in 
     connection with group health plans or individual health 
     coverage), and issuers of medicare supplemental policies, 
     without regard to--
       [(1) section 732(a) of the Employee Retirement Income 
     Security Act of 1974 (29 U.S.C. 1191a(a));
       [(2) section 2721(a) of the Public Health Service Act (42 
     U.S.C. 300gg-21(a)); and
       [(3) section 9831(a)(2) of the Internal Revenue Code of 
     1986.
       [(b) Compliance With Certain Confidentiality Standards With 
     Respect to Genetic Information.--
       [(1) In general.--The regulations promulgated by the 
     Secretary of Health and Human Services under part C of title 
     XI of the Social Security Act (42 U.S.C. 1320d et seq.) and 
     section 264 of the Health Insurance Portability and 
     Accountability Act of 1996 (42 U.S.C. 1320d-2 note) shall 
     apply to the use or disclosure of genetic information.
       [(2) Prohibition on underwriting and premium rating.--
     Notwithstanding paragraph (1), a group health plan, a health 
     insurance issuer, or issuer of a medicare supplemental policy 
     shall not use or disclose genetic information (including 
     information about a request for or a receipt of genetic 
     services by an individual or family member of such 
     individual) for purposes of underwriting, determinations of 
     eligibility to enroll, premium rating, or the creation, 
     renewal or replacement of a plan, contract or coverage for 
     health insurance or health benefits.
       [(c) Prohibition on Collection of Genetic Information.--
       [(1) In general.--A group health plan, health insurance 
     issuer, or issuer of a medicare supplemental policy shall not 
     request, require, or purchase genetic information (including 
     information about a request for or a receipt of genetic 
     services by an individual or family member of such 
     individual) for purposes of underwriting, determinations of 
     eligibility to enroll, premium rating, or the creation, 
     renewal or replacement of a plan, contract or coverage for 
     health insurance or health benefits.
       [(2) Limitation relating to the collection of genetic 
     information prior to enrollment.--A group health plan, health 
     insurance issuer, or issuer of a medicare supplemental policy 
     shall not request, require, or purchase genetic information 
     (including information about a request for or a receipt of 
     genetic services by an individual or family member of such 
     individual) concerning a participant, beneficiary, or 
     enrollee prior to the enrollment, and in connection with such 
     enrollment, of such individual under the plan, coverage, or 
     policy.
       [(3) Incidental collection.--Where a group health plan, 
     health insurance issuer, or issuer of a medicare supplemental 
     policy obtains genetic information incidental to the 
     requesting, requiring, or purchasing of other information 
     concerning a participant, beneficiary, or enrollee, such 
     request, requirement, or purchase shall not be considered a 
     violation of this subsection if--
       [(A) such request, requirement, or purchase is not in 
     violation of paragraph (1); and
       [(B) any genetic information (including information about a 
     request for or receipt of genetic services) requested, 
     required, or purchased is not used or disclosed in violation 
     of subsection (b).
       [(d) Application of Confidentiality Standards.--The 
     provisions of subsections (b) and (c) shall not apply--
       [(1) to group health plans, health insurance issuers, or 
     issuers of medicare supplemental policies that are not 
     otherwise covered under the regulations promulgated by the 
     Secretary of Health and Human Services under part C of title 
     XI of the Social Security Act (42 U.S.C. 1320d et seq.) and 
     section 264 of the Health Insurance Portability and 
     Accountability Act of 1996 (42 U.S.C. 1320d-2 note); and
       [(2) to genetic information that is not considered to be 
     individually-identifiable health information under the 
     regulations promulgated by the Secretary of Health and Human 
     Services under part C of title XI of the Social Security Act 
     (42 U.S.C. 1320d et seq.) and section 264 of the Health 
     Insurance Portability and Accountability Act of 1996 (42 
     U.S.C. 1320d-2 note).
       [(e) Enforcement.--A group health plan, health insurance 
     issuer, or issuer of a medicare supplemental policy that 
     violates a provision of this section shall be subject to the 
     penalties described in sections 1176 and 1177 of the Social 
     Security Act (42 U.S.C. 1320d-5 and 1320d-6) in the same 
     manner and to the same extent that such penalties apply to 
     violations of part C of title XI of such Act.
       [(f) Preemption.--
       [(1) In general.--A provision or requirement under this 
     section or a regulation promulgated under this section shall 
     supersede any contrary provision of State law unless such 
     provision of State law imposes requirements, standards, or 
     implementation specifications that are more stringent than 
     the requirements, standards, or implementation specifications 
     imposed under this section or such regulations. No penalty, 
     remedy, or cause of action to enforce such a State law that 
     is more stringent shall be preempted by this section.
       [(2) Rule of construction.--Nothing in paragraph (1) shall 
     be construed to establish a penalty, remedy, or cause of 
     action under State law if such penalty, remedy, or cause of 
     action is not otherwise available under such State law.
       [(g) Coordination With Privacy Regulations.--The Secretary 
     shall implement and administer this section in a manner that 
     is consistent with the implementation and administration by 
     the Secretary of the regulations promulgated by the Secretary 
     of Health and Human Services under part C of title XI of the 
     Social Security Act (42 U.S.C. 1320d et seq.) and section 264 
     of the Health Insurance Portability and Accountability Act of 
     1996 (42 U.S.C. 1320d-2 note).
       [(h) Definitions.--In this section:
       [(1) Genetic information; genetic services.--The terms 
     ``family member'', ``genetic information'', ``genetic 
     services'', and ``genetic test'' have the meanings given such 
     terms in section 2791 of the Public Health Service Act (42 
     U.S.C. 300gg-91), as amended by this Act.
       [(2) Group health plan; health insurance issuer.--The terms 
     ``group health plan'' and ``health insurance issuer'' include 
     only those plans and issuers that are covered under the 
     regulations described in subsection (d)(1).
       [(3) Issuer of a medicare supplemental policy.--The term 
     ``issuer of a medicare supplemental policy'' means an issuer 
     described in section 1882 of the Social Security Act (42 
     insert 1395ss).
       [(4) Secretary.--The term ``Secretary'' means the Secretary 
     of Health and Human Services.

     [SEC. 106. ASSURING COORDINATION.

       [(a) In General.--Except as provided in subsection (b), the 
     Secretary of the Treasury, the Secretary of Health and Human 
     Services, and the Secretary of Labor shall ensure, through 
     the execution of an interagency memorandum of understanding 
     among such Secretaries, that--
       [(1) regulations, rulings, and interpretations issued by 
     such Secretaries relating to the same matter over which two 
     or more such Secretaries have responsibility under this title 
     (and the amendments made by this title) are administered so 
     as to have the same effect at all times; and
       [(2) coordination of policies relating to enforcing the 
     same requirements through such Secretaries in order to have a 
     coordinated enforcement strategy that avoids duplication of 
     enforcement efforts and assigns priorities in enforcement.
       [(b) Authority of the Secretary.--The Secretary of Health 
     and Human Services has the sole authority to promulgate 
     regulations to implement section 105.

     [SEC. 107. REGULATIONS; EFFECTIVE DATE.

       [(a) Regulations.--Not later than 1 year after the date of 
     enactment of this title, the Secretary of Labor, the 
     Secretary of Health and Human Services, and the Secretary of 
     the Treasury shall issue final regulations in an accessible 
     format to carry out this title.
       [(b) Effective Date.--Except as provided in section 104, 
     the amendments made by this title shall take effect on the 
     date that is 18 months after the date of enactment of this 
     Act.
   [TITLE II--PROHIBITING EMPLOYMENT DISCRIMINATION ON THE BASIS OF 
                          GENETIC INFORMATION

     [SEC. 201. DEFINITIONS.

       [In this title:
       [(1) Commission.--The term ``Commission'' means the Equal 
     Employment Opportunity Commission as created by section 705 
     of the Civil Rights Act of 1964 (42 U.S.C. 2000e-4).
       [(2) Employee; employer; employment agency; labor 
     organization; member.--
       [(A) In general.--The term ``employee'' means--
       [(i) an employee (including an applicant), as defined in 
     section 701(f) of the Civil Rights Act of 1964 (42 U.S.C. 
     2000e(f));
       [(ii) a State employee (including an applicant) described 
     in section 304(a) of the Government Employee Rights Act of 
     1991 (42 U.S.C. 2000e-16c(a));
       [(iii) a covered employee (including an applicant), as 
     defined in section 101 of the Congressional Accountability 
     Act of 1995 (2 U.S.C. 1301);
       [(iv) a covered employee (including an applicant), as 
     defined in section 411(c) of title 3, United States Code; or
       [(v) an employee or applicant to which section 717(a) of 
     the Civil Rights Act of 1964 (42 U.S.C. 2000e-16(a)) applies.
       [(B) Employer.--The term ``employer'' means--
       [(i) an employer (as defined in section 701(b) of the Civil 
     Rights Act of 1964 (42 U.S.C. 2000e(b));
       [(ii) an entity employing a State employee described in 
     section 304(a) of the Government Employee Rights Act of 1991;
       [(iii) an employing office, as defined in section 101 of 
     the Congressional Accountability Act of 1995;
       [(iv) an employing office, as defined in section 411(c) of 
     title 3, United States Code; or

[[Page 2494]]

       [(v) an entity to which section 717(a) of the Civil Rights 
     Act of 1964 applies.
       [(C) Employment agency; labor organization.--The terms 
     ``employment agency'' and ``labor organization'' have the 
     meanings given the terms in section 701 of the Civil Rights 
     Act of 1964 (42 U.S.C. 2000e).
       [(D) Member.--The term ``member'', with respect to a labor 
     organization, includes an applicant for membership in a labor 
     organization.
       [(3) Family member.--The term ``family member'' means with 
     respect to an individual--
       [(A) the spouse of the individual;
       [(B) a dependent child of the individual, including a child 
     who is born to or placed for adoption with the individual; 
     and
       [(C) all other individuals related by blood to the 
     individual or the spouse or child described in subparagraph 
     (A) or (B).
       [(4) Genetic information.--
       [(A) In general.--Except as provided in subparagraph (B), 
     the term ``genetic information'' means information about--
       [(i) an individual's genetic tests;
       [(ii) the genetic tests of family members of the 
     individual; or
       [(iii) the occurrence of a disease or disorder in family 
     members of the individual.
       [(B) Exceptions.--The term ``genetic information'' shall 
     not include information about the sex or age of an 
     individual.
       [(5) Genetic monitoring.--The term ``genetic monitoring'' 
     means the periodic examination of employees to evaluate 
     acquired modifications to their genetic material, such as 
     chromosomal damage or evidence of increased occurrence of 
     mutations, that may have developed in the course of 
     employment due to exposure to toxic substances in the 
     workplace, in order to identify, evaluate, and respond to the 
     effects of or control adverse environmental exposures in the 
     workplace.
       [(6) Genetic services.--The term ``genetic services'' 
     means--
       [(A) a genetic test;
       [(B) genetic counseling (such as obtaining, interpreting or 
     assessing genetic information); or
       [(C) genetic education.
       [(7) Genetic test.--
       [(A) In general.--The term ``genetic test'' means the 
     analysis of human DNA, RNA, chromosomes, proteins, or 
     metabolites, that detects genotypes, mutations, or 
     chromosomal changes.
       [(B) Exception.--The term ``genetic test'' does not mean an 
     analysis of proteins or metabolites that does not detect 
     genotypes, mutations, or chromosomal changes.

     [SEC. 202. EMPLOYER PRACTICES.

       [(a) Use of Genetic Information.--It shall be an unlawful 
     employment practice for an employer--
       [(1) to fail or refuse to hire or to discharge any 
     employee, or otherwise to discriminate against any employee 
     with respect to the compensation, terms, conditions, or 
     privileges of employment of the employee, because of genetic 
     information with respect to the employee (or information 
     about a request for or the receipt of genetic services by 
     such employee or family member of such employee); or
       [(2) to limit, segregate, or classify the employees of the 
     employer in any way that would deprive or tend to deprive any 
     employee of employment opportunities or otherwise adversely 
     affect the status of the employee as an employee, because of 
     genetic information with respect to the employee (or 
     information about a request for or the receipt of genetic 
     services by such employee or family member of such employee).
       [(b) Acquisition of Genetic Information.--It shall be an 
     unlawful employment practice for an employer to request, 
     require, or purchase genetic information with respect to an 
     employee or a family member of the employee (or information 
     about a request for the receipt of genetic services by such 
     employee or a family member of such employee) except--
       [(1) where an employer inadvertently requests or requires 
     family medical history of the employee or family member of 
     the employee;
       [(2) where--
       [(A) health or genetic services are offered by the 
     employer, including such services offered as part of a bona 
     fide wellness program;
       [(B) the employee provides prior, knowing, voluntary, and 
     written authorization;
       [(C) only the employee (or family member if the family 
     member is receiving genetic services) and the licensed health 
     care professional or board certified genetic counselor 
     involved in providing such services receive individually 
     identifiable information concerning the results of such 
     services; and
       [(D) any individually identifiable genetic information 
     provided under subparagraph (C) in connection with the 
     services provided under subparagraph (A) is only available 
     for purposes of such services and shall not be disclosed to 
     the employer except in aggregate terms that do not disclose 
     the identity of specific employees;
       [(3) where an employer requests or requires family medical 
     history from the employee to comply with the certification 
     provisions of section 103 of the Family and Medical Leave Act 
     of 1993 (29 U.S.C. 2613) or such requirements under State 
     family and medical leave laws;
       [(4) where an employer purchases documents that are 
     commercially and publicly available (including newspapers, 
     magazines, periodicals, and books, but not including medical 
     databases or court records) that include family medical 
     history; or
       [(5) where the information involved is to be used for 
     genetic monitoring of the biological effects of toxic 
     substances in the workplace, but only if--
       [(A) the employer provides written notice of the genetic 
     monitoring to the employee;
       [(B)(i) the employee provides prior, knowing, voluntary, 
     and written authorization; or
       [(ii) the genetic monitoring is required by Federal or 
     State law;
       [(C) the employee is informed of individual monitoring 
     results;
       [(D) the monitoring is in compliance with--
       [(i) any Federal genetic monitoring regulations, including 
     any such regulations that may be promulgated by the Secretary 
     of Labor pursuant to the Occupational Safety and Health Act 
     of 1970 (29 U.S.C. 651 et seq.), the Federal Mine Safety and 
     Health Act of 1977 (30 U.S.C. 801 et seq.), or the Atomic 
     Energy Act of 1954 (42 U.S.C. 2011 et seq.); or
       [(ii) State genetic monitoring regulations, in the case of 
     a State that is implementing genetic monitoring regulations 
     under the authority of the Occupational Safety and Health Act 
     of 1970 (29 U.S.C. 651 et seq.); and
       [(E) the employer, excluding any licensed health care 
     professional or board certified genetic counselor that is 
     involved in the genetic monitoring program, receives the 
     results of the monitoring only in aggregate terms that do not 
     disclose the identity of specific employees;
       [(c) Preservation of Protections.--In the case of 
     information to which any of paragraphs (1) through (5) of 
     subsection (b) applies, such information may not be used in 
     violation of paragraph (1) or (2) of subsection (a) or 
     treated or disclosed in a manner that violates section 206.

     [SEC. 203. EMPLOYMENT AGENCY PRACTICES.

       [(a) Use of Genetic Information.--It shall be an unlawful 
     employment practice for an employment agency--
       [(1) to fail or refuse to refer for employment, or 
     otherwise to discriminate against, any individual because of 
     genetic information with respect to the individual (or 
     information about a request for or the receipt of genetic 
     services by such individual or family member of such 
     individual);
       [(2) to limit, segregate, or classify individuals or fail 
     or refuse to refer for employment any individual in any way 
     that would deprive or tend to deprive any individual of 
     employment opportunities, or otherwise adversely affect the 
     status of the individual as an employee, because of genetic 
     information with respect to the individual (or information 
     about a request for or the receipt of genetic services by 
     such individual or family member of such individual); or
       [(3) to cause or attempt to cause an employer to 
     discriminate against an individual in violation of this 
     title.
       [(b) Acquisition of Genetic Information.--It shall be an 
     unlawful employment practice for an employment agency to 
     request, require, or purchase genetic information with 
     respect to an individual or a family member of the individual 
     (or information about a request for the receipt of genetic 
     services by such individual or a family member of such 
     individual) except--
       [(1) where an employment agency inadvertently requests or 
     requires family medical history of the individual or family 
     member of the individual;
       [(2) where--
       [(A) health or genetic services are offered by the 
     employment agency, including such services offered as part of 
     a bona fide wellness program;
       [(B) the individual provides prior, knowing, voluntary, and 
     written authorization;
       [(C) only the individual (or family member if the family 
     member is receiving genetic services) and the licensed health 
     care professional or board certified genetic counselor 
     involved in providing such services receive individually 
     identifiable information concerning the results of such 
     services; and
       [(D) any individually identifiable genetic information 
     provided under subparagraph (C) in connection with the 
     services provided under subparagraph (A) is only available 
     for purposes of such services and shall not be disclosed to 
     the employment agency except in aggregate terms that do not 
     disclose the identity of specific individuals;
       [(3) where an employment agency requests or requires family 
     medical history from the individual to comply with the 
     certification provisions of section 103 of the Family and 
     Medical Leave Act of 1993 (29 U.S.C. 2613) or such 
     requirements under State family and medical leave laws;
       [(4) where an employment agency purchases documents that 
     are commercially and publicly available (including 
     newspapers, magazines, periodicals, and books, but not 
     including medical databases or court records) that include 
     family medical history; or
       [(5) where the information involved is to be used for 
     genetic monitoring of the biological effects of toxic 
     substances in the workplace, but only if--
       [(A) the employment agency provides written notice of the 
     genetic monitoring to the individual;

[[Page 2495]]

       [(B)(i) the individual provides prior, knowing, voluntary, 
     and written authorization; or
       [(ii) the genetic monitoring is required by Federal or 
     State law;
       [(C) the individual is informed of individual monitoring 
     results;
       [(D) the monitoring is in compliance with--
       [(i) any Federal genetic monitoring regulations, including 
     any such regulations that may be promulgated by the Secretary 
     of Labor pursuant to the Occupational Safety and Health Act 
     of 1970 (29 U.S.C. 651 et seq.), the Federal Mine Safety and 
     Health Act of 1977 (30 U.S.C. 801 et seq.), or the Atomic 
     Energy Act of 1954 (42 U.S.C. 2011 et seq.); or
       [(ii) State genetic monitoring regulations, in the case of 
     a State that is implementing genetic monitoring regulations 
     under the authority of the Occupational Safety and Health Act 
     of 1970 (29 U.S.C. 651 et seq.); and
       [(E) the employment agency, excluding any licensed health 
     care professional or board certified genetic counselor that 
     is involved in the genetic monitoring program, receives the 
     results of the monitoring only in aggregate terms that do not 
     disclose the identity of specific individuals;
       [(c) Preservation of Protections.--In the case of 
     information to which any of paragraphs (1) through (5) of 
     subsection (b) applies, such information may not be used in 
     violation of paragraph (1) or (2) of subsection (a) or 
     treated or disclosed in a manner that violates section 206.

     [SEC. 204. LABOR ORGANIZATION PRACTICES.

       [(a) Use of Genetic Information.--It shall be an unlawful 
     employment practice for a labor organization--
       [(1) to exclude or to expel from the membership of the 
     organization, or otherwise to discriminate against, any 
     member because of genetic information with respect to the 
     member (or information about a request for or the receipt of 
     genetic services by such member or family member of such 
     member);
       [(2) to limit, segregate, or classify the members of the 
     organization, or fail or refuse to refer for employment any 
     member, in any way that would deprive or tend to deprive any 
     member of employment opportunities, or otherwise adversely 
     affect the status of the member as an employee, because of 
     genetic information with respect to the member (or 
     information about a request for or the receipt of genetic 
     services by such member or family member of such member); or
       [(3) to cause or attempt to cause an employer to 
     discriminate against a member in violation of this title.
       [(b) Acquisition of Genetic Information.--It shall be an 
     unlawful employment practice for a labor organization to 
     request, require, or purchase genetic information with 
     respect to a member or a family member of the member (or 
     information about a request for the receipt of genetic 
     services by such member or a family member of such member) 
     except--
       [(1) where a labor organization inadvertently requests or 
     requires family medical history of the member or family 
     member of the member;
       [(2) where--
       [(A) health or genetic services are offered by the labor 
     organization, including such services offered as part of a 
     bona fide wellness program;
       [(B) the member provides prior, knowing, voluntary, and 
     written authorization;
       [(C) only the member (or family member if the family member 
     is receiving genetic services) and the licensed health care 
     professional or board certified genetic counselor involved in 
     providing such services receive individually identifiable 
     information concerning the results of such services; and
       [(D) any individually identifiable genetic information 
     provided under subparagraph (C) in connection with the 
     services provided under subparagraph (A) is only available 
     for purposes of such services and shall not be disclosed to 
     the labor organization except in aggregate terms that do not 
     disclose the identity of specific members;
       [(3) where a labor organization requests or requires family 
     medical history from the members to comply with the 
     certification provisions of section 103 of the Family and 
     Medical Leave Act of 1993 (29 U.S.C. 2613) or such 
     requirements under State family and medical leave laws;
       [(4) where a labor organization purchases documents that 
     are commercially and publicly available (including 
     newspapers, magazines, periodicals, and books, but not 
     including medical databases or court records) that include 
     family medical history; or
       [(5) where the information involved is to be used for 
     genetic monitoring of the biological effects of toxic 
     substances in the workplace, but only if--
       [(A) the labor organization provides written notice of the 
     genetic monitoring to the member;
       [(B)(i) the member provides prior, knowing, voluntary, and 
     written authorization; or
       [(ii) the genetic monitoring is required by Federal or 
     State law;
       [(C) the member is informed of individual monitoring 
     results;
       [(D) the monitoring is in compliance with--
       [(i) any Federal genetic monitoring regulations, including 
     any such regulations that may be promulgated by the Secretary 
     of Labor pursuant to the Occupational Safety and Health Act 
     of 1970 (29 U.S.C. 651 et seq.), the Federal Mine Safety and 
     Health Act of 1977 (30 U.S.C. 801 et seq.), or the Atomic 
     Energy Act of 1954 (42 U.S.C. 2011 et seq.); or
       [(ii) State genetic monitoring regulations, in the case of 
     a State that is implementing genetic monitoring regulations 
     under the authority of the Occupational Safety and Health Act 
     of 1970 (29 U.S.C. 651 et seq.); and
       [(E) the labor organization, excluding any licensed health 
     care professional or board certified genetic counselor that 
     is involved in the genetic monitoring program, receives the 
     results of the monitoring only in aggregate terms that do not 
     disclose the identity of specific members;
       [(c) Preservation of Protections.--In the case of 
     information to which any of paragraphs (1) through (5) of 
     subsection (b) applies, such information may not be used in 
     violation of paragraph (1) or (2) of subsection (a) or 
     treated or disclosed in a manner that violates section 206.

     [SEC. 205. TRAINING PROGRAMS.

       [(a) Use of Genetic Information.--It shall be an unlawful 
     employment practice for any employer, labor organization, or 
     joint labor-management committee controlling apprenticeship 
     or other training or retraining, including on-the-job 
     training programs--
       [(1) to discriminate against any individual because of 
     genetic information with respect to the individual (or 
     information about a request for or the receipt of genetic 
     services by such individual or a family member of such 
     individual) in admission to, or employment in, any program 
     established to provide apprenticeship or other training or 
     retraining;
       [(2) to limit, segregate, or classify the applicants for or 
     participants in such apprenticeship or other training or 
     retraining, or fail or refuse to refer for employment any 
     individual, in any way that would deprive or tend to deprive 
     any individual of employment opportunities, or otherwise 
     adversely affect the status of the individual as an employee, 
     because of genetic information with respect to the individual 
     (or information about a request for or receipt of genetic 
     services by such individual or family member of such 
     individual); or
       [(3) to cause or attempt to cause an employer to 
     discriminate against an applicant for or a participant in 
     such apprenticeship or other training or retraining in 
     violation of this title.
       [(b) Acquisition of Genetic Information.--It shall be an 
     unlawful employment practice for an employer, labor 
     organization, or joint labor-management committee described 
     in subsection (a) to request, require, or purchase genetic 
     information with respect to an individual or a family member 
     of the individual (or information about a request for the 
     receipt of genetic services by such individual or a family 
     member of such individual) except--
       [(1) where the employer, labor organization, or joint 
     labor-management committee inadvertently requests or requires 
     family medical history of the individual or family member of 
     the individual;
       [(2) where--
       [(A) health or genetic services are offered by the 
     employer, labor organization, or joint labor-management 
     committee, including such services offered as part of a bona 
     fide wellness program;
       [(B) the individual provides prior, knowing, voluntary, and 
     written authorization;
       [(C) only the individual (or family member if the family 
     member is receiving genetic services) and the licensed health 
     care professional or board certified genetic counselor 
     involved in providing such services receive individually 
     identifiable information concerning the results of such 
     services;
       [(D) any individually identifiable genetic information 
     provided under subparagraph (C) in connection with the 
     services provided under subparagraph (A) is only available 
     for purposes of such services and shall not be disclosed to 
     the employer, labor organization, or joint labor-management 
     committee except in aggregate terms that do not disclose the 
     identity of specific individuals;
       [(3) where the employer, labor organization, or joint 
     labor-management committee requests or requires family 
     medical history from the individual to comply with the 
     certification provisions of section 103 of the Family and 
     Medical Leave Act of 1993 (29 U.S.C. 2613) or such 
     requirements under State family and medical leave laws;
       [(4) where the employer, labor organization, or joint 
     labor-management committee purchases documents that are 
     commercially and publicly available (including newspapers, 
     magazines, periodicals, and books, but not including medical 
     databases or court records) that include family medical 
     history; or
       [(5) where the information involved is to be used for 
     genetic monitoring of the biological effects of toxic 
     substances in the workplace, but only if--
       [(A) the employer, labor organization, or joint labor-
     management committee provides written notice of the genetic 
     monitoring to the individual;
       [(B)(i) the individual provides prior, knowing, voluntary, 
     and written authorization; or
       [(ii) the genetic monitoring is required by Federal or 
     State law;

[[Page 2496]]

       [(C) the individual is informed of individual monitoring 
     results;
       [(D) the monitoring is in compliance with--
       [(i) any Federal genetic monitoring regulations, including 
     any such regulations that may be promulgated by the Secretary 
     of Labor pursuant to the Occupational Safety and Health Act 
     of 1970 (29 U.S.C. 651 et seq.), the Federal Mine Safety and 
     Health Act of 1977 (30 U.S.C. 801 et seq.), or the Atomic 
     Energy Act of 1954 (42 U.S.C. 2011 et seq.); or
       [(ii) State genetic monitoring regulations, in the case of 
     a State that is implementing genetic monitoring regulations 
     under the authority of the Occupational Safety and Health Act 
     of 1970 (29 U.S.C. 651 et seq.); and
       [(E) the employer, labor organization, or joint labor-
     management committee, excluding any licensed health care 
     professional or board certified genetic counselor that is 
     involved in the genetic monitoring program, receives the 
     results of the monitoring only in aggregate terms that do not 
     disclose the identity of specific individuals;
       [(c) Preservation of Protections.--In the case of 
     information to which any of paragraphs (1) through (5) of 
     subsection (b) applies, such information may not be used in 
     violation of paragraph (1) or (2) of subsection (a) or 
     treated or disclosed in a manner that violates section 206.

     [SEC. 206. CONFIDENTIALITY OF GENETIC INFORMATION.

       [(a) Treatment of Information as Part of Confidential 
     Medical Record.--If an employer, employment agency, labor 
     organization, or joint labor-management committee possesses 
     genetic information about an employee or member (or 
     information about a request for or receipt of genetic 
     services by such employee or member or family member of such 
     employee or member), such information shall be maintained on 
     separate forms and in separate medical files and be treated 
     as a confidential medical record of the employee or member.
       [(b) Limitation on Disclosure.--An employer, employment 
     agency, labor organization, or joint labor-management 
     committee shall not disclose genetic information concerning 
     an employee or member (or information about a request for or 
     receipt of genetic services by such employee or member or 
     family member of such employee or member) except--
       [(1) to the employee (or family member if the family member 
     is receiving the genetic services) or member of a labor 
     organization at the request of the employee or member of such 
     organization;
       [(2) to an occupational or other health researcher if the 
     research is conducted in compliance with the regulations and 
     protections provided for under part 46 of title 45, Code of 
     Federal Regulations;
       [(3) in response to an order of a court, except that--
       [(A) the employer, employment agency, labor organization, 
     or joint labor-management committee may disclose only the 
     genetic information expressly authorized by such order; and
       [(B) if the court order was secured without the knowledge 
     of the employee or member to whom the information refers, the 
     employer, employment agency, labor organization, or joint 
     labor-management committee shall provide the employee or 
     member with adequate notice to challenge the court order;
       [(4) to government officials who are investigating 
     compliance with this title if the information is relevant to 
     the investigation; or
       [(5) to the extent that such disclosure is made in 
     connection with the employee's compliance with the 
     certification provisions of section 103 of the Family and 
     Medical Leave Act of 1993 (29 U.S.C. 2613) or such 
     requirements under State family and medical leave laws.

     [SEC. 207. REMEDIES AND ENFORCEMENT.

       [(a) Employees Covered by Title VII of the Civil Rights Act 
     of 1964.--
       [(1) In general.--The powers, remedies, and procedures 
     provided in sections 705, 706, 707, 709, 710, and 711 of the 
     Civil Rights Act of 1964 (42 U.S.C. 2000e-4 et seq.) to the 
     Commission, the Attorney General, or any person, alleging a 
     violation of title VII of that Act (42 U.S.C. 2000e et seq.) 
     shall be the powers, remedies, and procedures this title 
     provides to the Commission, the Attorney General, or any 
     person, respectively, alleging an unlawful employment 
     practice in violation of this title against an employee 
     described in section 201(2)(A)(i), except as provided in 
     paragraphs (2) and (3).
       [(2) Costs and fees.--The powers, remedies, and procedures 
     provided in subsections (b) and (c) of section 722 of the 
     Revised Statutes (42 U.S.C. 1988), shall be powers, remedies, 
     and procedures this title provides to the Commission, the 
     Attorney General, or any person, alleging such a practice.
       [(3) Damages.--The powers, remedies, and procedures 
     provided in section 1977A of the Revised Statutes (42 U.S.C. 
     1981a), including the limitations contained in subsection 
     (b)(3) of such section 1977A, shall be powers, remedies, and 
     procedures this title provides to the Commission, the 
     Attorney General, or any person, alleging such a practice 
     (not an employment practice specifically excluded from 
     coverage under section 1977A(a)(1) of the Revised Statutes).
       [(b) Employees Covered by Government Employee Rights Act of 
     1991.--
       [(1) In general.--The powers, remedies, and procedures 
     provided in sections 302 and 304 of the Government Employee 
     Rights Act of 1991 (42 U.S.C. 2000e-16b, 2000e-16c) to the 
     Commission, or any person, alleging a violation of section 
     302(a)(1) of that Act (42 U.S.C. 2000e-16b(a)(1)) shall be 
     the powers, remedies, and procedures this title provides to 
     the Commission, or any person, respectively, alleging an 
     unlawful employment practice in violation of this title 
     against an employee described in section 201(2)(A)(ii), 
     except as provided in paragraphs (2) and (3).
       [(2) Costs and fees.--The powers, remedies, and procedures 
     provided in subsections (b) and (c) of section 722 of the 
     Revised Statutes (42 U.S.C. 1988), shall be powers, remedies, 
     and procedures this title provides to the Commission, or any 
     person, alleging such a practice.
       [(3) Damages.--The powers, remedies, and procedures 
     provided in section 1977A of the Revised Statutes (42 U.S.C. 
     1981a), including the limitations contained in subsection 
     (b)(3) of such section 1977A, shall be powers, remedies, and 
     procedures this title provides to the Commission, or any 
     person, alleging such a practice (not an employment practice 
     specifically excluded from coverage under section 1977A(a)(1) 
     of the Revised Statutes).
       [(c) Employees Covered by Congressional Accountability Act 
     of 1995.--
       [(1) In general.--The powers, remedies, and procedures 
     provided in the Congressional Accountability Act of 1995 (2 
     U.S.C. 1301 et seq.) to the Board (as defined in section 101 
     of that Act (2 U.S.C. 1301)), or any person, alleging a 
     violation of section 201(a)(1) of that Act (42 U.S.C. 
     1311(a)(1)) shall be the powers, remedies, and procedures 
     this title provides to that Board, or any person, alleging an 
     unlawful employment practice in violation of this title 
     against an employee described in section 201(2)(A)(iii), 
     except as provided in paragraphs (2) and (3).
       [(2) Costs and fees.--The powers, remedies, and procedures 
     provided in subsections (b) and (c) of section 722 of the 
     Revised Statutes (42 U.S.C. 1988), shall be powers, remedies, 
     and procedures this title provides to that Board, or any 
     person, alleging such a practice.
       [(3) Damages.--The powers, remedies, and procedures 
     provided in section 1977A of the Revised Statutes (42 U.S.C. 
     1981a), including the limitations contained in subsection 
     (b)(3) of such section 1977A, shall be powers, remedies, and 
     procedures this title provides to that Board, or any person, 
     alleging such a practice (not an employment practice 
     specifically excluded from coverage under section 1977A(a)(1) 
     of the Revised Statutes).
       [(4) Other applicable provisions.--With respect to a claim 
     alleging a practice described in paragraph (1), title III of 
     the Congressional Accountability Act of 1995 (2 U.S.C. 1381 
     et seq.) shall apply in the same manner as such title applies 
     with respect to a claim alleging a violation of section 
     201(a)(1) of such Act (2 U.S.C. 1311(a)(1)).
       [(d) Employees Covered by Chapter 5 of Title 3, United 
     States Code.--
       [(1) In general.--The powers, remedies, and procedures 
     provided in chapter 5 of title 3, United States Code, to the 
     President, the Commission, the Merit Systems Protection 
     Board, or any person, alleging a violation of section 
     411(a)(1) of that title, shall be the powers, remedies, and 
     procedures this title provides to the President, the 
     Commission, such Board, or any person, respectively, alleging 
     an unlawful employment practice in violation of this title 
     against an employee described in section 201(2)(A)(iv), 
     except as provided in paragraphs (2) and (3).
       [(2) Costs and fees.--The powers, remedies, and procedures 
     provided in subsections (b) and (c) of section 722 of the 
     Revised Statutes (42 U.S.C. 1988), shall be powers, remedies, 
     and procedures this title provides to the President, the 
     Commission, such Board, or any person, alleging such a 
     practice.
       [(3) Damages.--The powers, remedies, and procedures 
     provided in section 1977A of the Revised Statutes (42 U.S.C. 
     1981a), including the limitations contained in subsection 
     (b)(3) of such section 1977A, shall be powers, remedies, and 
     procedures this title provides to the President, the 
     Commission, such Board, or any person, alleging such a 
     practice (not an employment practice specifically excluded 
     from coverage under section 1977A(a)(1) of the Revised 
     Statutes).
       [(e) Employees Covered by Section 717 of the Civil Rights 
     Act of 1964.--
       [(1) In general.--The powers, remedies, and procedures 
     provided in section 717 of the Civil Rights Act of 1964 (42 
     U.S.C. 2000e-16) to the Commission, the Attorney General, the 
     Librarian of Congress, or any person, alleging a violation of 
     that section shall be the powers, remedies, and procedures 
     this title provides to the Commission, the Attorney General, 
     the Librarian of Congress, or any person, respectively, 
     alleging an unlawful employment practice in violation of this 
     title against an employee or applicant described in section 
     201(2)(A)(v), except as provided in paragraphs (2) and (3).
       [(2) Costs and fees.--The powers, remedies, and procedures 
     provided in subsections (b) and (c) of section 722 of the 
     Revised Statutes (42 U.S.C. 1988), shall be powers, remedies, 
     and procedures this title provides to the Commission, the 
     Attorney General, the Librarian of Congress, or any person, 
     alleging such a practice.

[[Page 2497]]

       [(3) Damages.--The powers, remedies, and procedures 
     provided in section 1977A of the Revised Statutes (42 U.S.C. 
     1981a), including the limitations contained in subsection 
     (b)(3) of such section 1977A, shall be powers, remedies, and 
     procedures this title provides to the Commission, the 
     Attorney General, the Librarian of Congress, or any person, 
     alleging such a practice (not an employment practice 
     specifically excluded from coverage under section 1977A(a)(1) 
     of the Revised Statutes).
       [(f) Definition.--In this section, the term ``Commission'' 
     means the Equal Employment Opportunity Commission.

     [SEC. 208. DISPARATE IMPACT.

       [(a) General Rule.--Notwithstanding any other provision of 
     this Act, ``disparate impact'', as that term is used in 
     section 703(k) of the Civil Rights Act of 1964 (42 U.S.C. 
     2000e-d(k)), on the basis of genetic information does not 
     establish a cause of action under this Act.
       [(b) Commission.--On the date that is 6 years after the 
     date of enactment of this Act, there shall be established a 
     commission, to be known as the Genetic Nondiscrimination 
     Study Commission (referred to in this section as the 
     ``Commission'') to review the developing science of genetics 
     and to make recommendations to Congress regarding whether to 
     provide a disparate impact cause of action under this Act.
       [(c) Membership.--
       [(1) In general.--The Commission shall be composed of 8 
     members, of which--
       [(A) 1 member shall be appointed by the Majority Leader of 
     the Senate;
       [(B) 1 member shall be appointed by the Minority Leader of 
     the Senate;
       [(C) 1 member shall be appointed by the Chairman of the 
     Committee on Health, Education, Labor, and Pensions of the 
     Senate;
       [(D) 1 member shall be appointed by the ranking minority 
     member of the Committee on Health, Education, Labor, and 
     Pensions of the Senate;
       [(E) 1 member shall be appointed by the Speaker of the 
     House of Representatives;
       [(F) 1 member shall be appointed by the Minority Leader of 
     the House of Representatives;
       [(G) 1 member shall be appointed by the Chairman of the 
     Committee on Education and the Workforce of the House of 
     Representatives; and
       [(H) 1 member shall be appointed by the ranking minority 
     member of the Committee on Education and the Workforce of the 
     House of Representatives.
       [(2) Compensation and expenses.--The members of the 
     Commission shall not receive compensation for the performance 
     of services for the Commission, but shall be allowed travel 
     expenses, including per diem in lieu of subsistence, at rates 
     authorized for employees of agencies under subchapter I of 
     chapter 57 of title 5, United States Code, while away from 
     their homes or regular places of business in the performance 
     of services for the Commission.
       [(d) Administrative Provisions.--
       [(1) Location.--The Commission shall be located in a 
     facility maintained by the Equal Employment Opportunity 
     Commission.
       [(2) Detail of government employees.--Any Federal 
     Government employee may be detailed to the Commission without 
     reimbursement, and such detail shall be without interruption 
     or loss of civil service status or privilege.
       [(3) Information from federal agencies.--The Commission may 
     secure directly from any Federal department or agency such 
     information as the Commission considers necessary to carry 
     out the provisions of this section. Upon request of the 
     Commission, the head of such department or agency shall 
     furnish such information to the Commission.
       [(4) Hearings.--The Commission may hold such hearings, sit 
     and act at such times and places, take such testimony, and 
     receive such evidence as the Commission considers advisable 
     to carry out the objectives of this section, except that, to 
     the extent possible, the Commission shall use existing data 
     and research.
       [(5) Postal services.--The Commission may use the United 
     States mails in the same manner and under the same conditions 
     as other departments and agencies of the Federal Government.
       [(e) Report.--Not later than 1 year after all of the 
     members are appointed to the Commission under subsection 
     (c)(1), the Commission shall submit to Congress a report that 
     summarizes the findings of the Commission and makes such 
     recommendations for legislation as are consistent with this 
     Act.
       [(f) Authorization of Appropriations.--There are authorized 
     to be appropriated to the Equal Employment Opportunity 
     Commission such sums as may be necessary to carry out this 
     section.

     [SEC. 209. CONSTRUCTION.

       [Nothing in this title shall be construed to--
       [(1) limit the rights or protections of an individual under 
     the Americans with Disabilities Act of 1990 (42 U.S.C. 12101 
     et seq.), including coverage afforded to individuals under 
     section 102 of such Act (42 U.S.C. 12112), or under the 
     Rehabilitation Act of 1973 (29 U.S.C. 701 et seq.);
       [(2)(A) limit the rights or protections of an individual to 
     bring an action under this title against an employer, 
     employment agency, labor organization, or joint labor-
     management committee for a violation of this title; or
       [(B) establish a violation under this title for an 
     employer, employment agency, labor organization, or joint 
     labor-management committee of a provision of the amendments 
     made by title I;
       [(3) limit the rights or protections of an individual under 
     any other Federal or State statute that provides equal or 
     greater protection to an individual than the rights or 
     protections provided for under this title;
       [(4) apply to the Armed Forces Repository of Specimen 
     Samples for the Identification of Remains;
       [(5) limit or expand the protections, rights, or 
     obligations of employees or employers under applicable 
     workers' compensation laws;
       [(6) limit the authority of a Federal department or agency 
     to conduct or sponsor occupational or other health research 
     that is conducted in compliance with the regulations 
     contained in part 46 of title 45, Code of Federal Regulations 
     (or any corresponding or similar regulation or rule); and
       [(7) limit the statutory or regulatory authority of the 
     Occupational Safety and Health Administration or the Mine 
     Safety and Health Administration to promulgate or enforce 
     workplace safety and health laws and regulations.

     [SEC. 210. MEDICAL INFORMATION THAT IS NOT GENETIC 
                   INFORMATION.

       [An employer, employment agency, labor organization, or 
     joint labor-management committee shall not be considered to 
     be in violation of this title based on the use, acquisition, 
     or disclosure of medical information that is not genetic 
     information about a manifested disease, disorder, or 
     pathological condition of an employee or member, including a 
     manifested disease, disorder, or pathological condition that 
     has or may have a genetic basis.

     [SEC. 211. REGULATIONS.

       [Not later than 1 year after the date of enactment of this 
     title, the Commission shall issue final regulations in an 
     accessible format to carry out this title.

     [SEC. 212. AUTHORIZATION OF APPROPRIATIONS.

       [There are authorized to be appropriated such sums as may 
     be necessary to carry out this title (except for section 
     208).

     [SEC. 213. EFFECTIVE DATE.

       [This title takes effect on the date that is 18 months 
     after the date of enactment of this Act.
                   TITLE III--MISCELLANEOUS PROVISION

     [SEC. 301. SEVERABILITY.

       [If any provision of this Act, an amendment made by this 
     Act, or the application of such provision or amendment to any 
     person or circumstance is held to be unconstitutional, the 
     remainder of this Act, the amendments made by this Act, and 
     the application of such provisions to any person or 
     circumstance shall not be affected thereby.]

     SECTION 1. SHORT TITLE; TABLE OF CONTENTS.

       (a) Short Title.--This Act may be cited as the ``Genetic 
     Information Nondiscrimination Act of 2005''.
       (b) Table of Contents.--The table of contents of this Act 
     is as follows:

Sec. 1. Short title; table of contents.
Sec. 2. Findings.

         TITLE I--GENETIC NONDISCRIMINATION IN HEALTH INSURANCE

Sec. 101. Amendments to Employee Retirement Income Security Act of 
              1974.
Sec. 102. Amendments to the Public Health Service Act.
Sec. 103. Amendments to the Internal Revenue Code of 1986.
Sec. 104. Amendments to title XVIII of the Social Security Act relating 
              to medigap.
Sec. 105. Privacy and confidentiality.
Sec. 106. Assuring coordination.
Sec. 107. Regulations; effective date.

TITLE II--PROHIBITING EMPLOYMENT DISCRIMINATION ON THE BASIS OF GENETIC 
                              INFORMATION

Sec. 201. Definitions.
Sec. 202. Employer practices.
Sec. 203. Employment agency practices.
Sec. 204. Labor organization practices.
Sec. 205. Training programs.
Sec. 206. Confidentiality of genetic information.
Sec. 207. Remedies and enforcement.
Sec. 208. Disparate impact.
Sec. 209. Construction.
Sec. 210. Medical information that is not genetic information.
Sec. 211. Regulations.
Sec. 212. Authorization of appropriations.
Sec. 213. Effective date.

                   TITLE III--MISCELLANEOUS PROVISION

Sec. 301. Severability.

     SEC. 2. FINDINGS.

       Congress makes the following findings:
       (1) Deciphering the sequence of the human genome and other 
     advances in genetics open major new opportunities for medical 
     progress. New knowledge about the genetic basis of illness 
     will allow for earlier detection of illnesses, often before 
     symptoms have begun. Genetic testing can allow individuals to 
     take steps to reduce the likelihood that they will contract a 
     particular disorder. New knowledge about genetics may allow 
     for the development of better therapies that are more 
     effective against disease or have

[[Page 2498]]

     fewer side effects than current treatments. These advances 
     give rise to the potential misuse of genetic information to 
     discriminate in health insurance and employment.
       (2) The early science of genetics became the basis of State 
     laws that provided for the sterilization of persons having 
     presumed genetic ``defects'' such as mental retardation, 
     mental disease, epilepsy, blindness, and hearing loss, among 
     other conditions. The first sterilization law was enacted in 
     the State of Indiana in 1907. By 1981, a majority of States 
     adopted sterilization laws to ``correct'' apparent genetic 
     traits or tendencies. Many of these State laws have since 
     been repealed, and many have been modified to include 
     essential constitutional requirements of due process and 
     equal protection. However, the current explosion in the 
     science of genetics, and the history of sterilization laws by 
     the States based on early genetic science, compels 
     Congressional action in this area.
       (3) Although genes are facially neutral markers, many 
     genetic conditions and disorders are associated with 
     particular racial and ethnic groups and gender. Because some 
     genetic traits are most prevalent in particular groups, 
     members of a particular group may be stigmatized or 
     discriminated against as a result of that genetic 
     information. This form of discrimination was evident in the 
     1970s, which saw the advent of programs to screen and 
     identify carriers of sickle cell anemia, a disease which 
     afflicts African-Americans. Once again, State legislatures 
     began to enact discriminatory laws in the area, and in the 
     early 1970s began mandating genetic screening of all African 
     Americans for sickle cell anemia, leading to discrimination 
     and unnecessary fear. To alleviate some of this stigma, 
     Congress in 1972 passed the National Sickle Cell Anemia 
     Control Act, which withholds Federal funding from States 
     unless sickle cell testing is voluntary.
       (4) Congress has been informed of examples of genetic 
     discrimination in the workplace. These include the use of 
     pre-employment genetic screening at Lawrence Berkeley 
     Laboratory, which led to a court decision in favor of the 
     employees in that case Norman-Bloodsaw v. Lawrence Berkeley 
     Laboratory (135 F.3d 1260, 1269 (9th Cir. 1998)). Congress 
     clearly has a compelling public interest in relieving the 
     fear of discrimination and in prohibiting its actual practice 
     in employment and health insurance.
       (5) Federal law addressing genetic discrimination in health 
     insurance and employment is incomplete in both the scope and 
     depth of its protections. Moreover, while many States have 
     enacted some type of genetic non-discrimination law, these 
     laws vary widely with respect to their approach, application, 
     and level of protection. Congress has collected substantial 
     evidence that the American public and the medical community 
     find the existing patchwork of State and Federal laws to be 
     confusing and inadequate to protect them from discrimination. 
     Therefore Federal legislation establishing a national and 
     uniform basic standard is necessary to fully protect the 
     public from discrimination and allay their concerns about the 
     potential for discrimination, thereby allowing individuals to 
     take advantage of genetic testing, technologies, research, 
     and new therapies.
         TITLE I--GENETIC NONDISCRIMINATION IN HEALTH INSURANCE

     SEC. 101. AMENDMENTS TO EMPLOYEE RETIREMENT INCOME SECURITY 
                   ACT OF 1974.

       (a) Prohibition of Health Discrimination on the Basis of 
     Genetic Information or Genetic Services.--
       (1) No enrollment restriction for genetic services.--
     Section 702(a)(1)(F) of the Employee Retirement Income 
     Security Act of 1974 (29 U.S.C. 1182(a)(1)(F)) is amended by 
     inserting before the period the following: ``(including 
     information about a request for or receipt of genetic 
     services by an individual or family member of such 
     individual)''.
       (2) No discrimination in group premiums based on genetic 
     information.--Section 702(b) of the Employee Retirement 
     Income Security Act of 1974 (29 U.S.C. 1182(b)) is amended--
       (A) in paragraph (2)(A), by inserting before the semicolon 
     the following: ``except as provided in paragraph (3)''; and
       (B) by adding at the end the following:
       ``(3) No discrimination in group premiums based on genetic 
     information.--For purposes of this section, a group health 
     plan, or a health insurance issuer offering group health 
     insurance coverage in connection with a group health plan, 
     shall not adjust premium or contribution amounts for a group 
     on the basis of genetic information concerning an individual 
     in the group or a family member of the individual (including 
     information about a request for or receipt of genetic 
     services by an individual or family member of such 
     individual).''.
       (b) Limitations on Genetic Testing.--Section 702 of the 
     Employee Retirement Income Security Act of 1974 (29 U.S.C. 
     1182) is amended by adding at the end the following:
       ``(c) Genetic Testing.--
       ``(1) Limitation on requesting or requiring genetic 
     testing.--A group health plan, or a health insurance issuer 
     offering health insurance coverage in connection with a group 
     health plan, shall not request or require an individual or a 
     family member of such individual to undergo a genetic test.
       ``(2) Rule of construction.--Nothing in this part shall be 
     construed to--
       ``(A) limit the authority of a health care professional who 
     is providing health care services with respect to an 
     individual to request that such individual or a family member 
     of such individual undergo a genetic test;
       ``(B) limit the authority of a health care professional who 
     is employed by or affiliated with a group health plan or a 
     health insurance issuer and who is providing health care 
     services to an individual as part of a bona fide wellness 
     program to notify such individual of the availability of a 
     genetic test or to provide information to such individual 
     regarding such genetic test; or
       ``(C) authorize or permit a health care professional to 
     require that an individual undergo a genetic test.
       ``(d) Application to All Plans.--The provisions of 
     subsections (a)(1)(F), (b)(3), and (c) shall apply to group 
     health plans and health insurance issuers without regard to 
     section 732(a).''.
       (c) Remedies and Enforcement.--Section 502 of the Employee 
     Retirement Income Security Act of 1974 (29 U.S.C. 1132) is 
     amended by adding at the end the following:
       ``(n) Enforcement of Genetic Nondiscrimination 
     Requirements.--
       ``(1) Injunctive relief for irreparable harm.--With respect 
     to any violation of subsection (a)(1)(F), (b)(3), or (c) of 
     section 702, a participant or beneficiary may seek relief 
     under subsection 502(a)(1)(B) prior to the exhaustion of 
     available administrative remedies under section 503 if it is 
     demonstrated to the court, by a preponderance of the 
     evidence, that the exhaustion of such remedies would cause 
     irreparable harm to the health of the participant or 
     beneficiary. Any determinations that already have been made 
     under section 503 in such case, or that are made in such case 
     while an action under this paragraph is pending, shall be 
     given due consideration by the court in any action under this 
     subsection in such case.
       ``(2) Equitable relief for genetic nondiscrimination.--
       ``(A) Reinstatement of benefits where equitable relief has 
     been awarded.--The recovery of benefits by a participant or 
     beneficiary under a civil action under this section may 
     include an administrative penalty under subparagraph (B) and 
     the retroactive reinstatement of coverage under the plan 
     involved to the date on which the participant or beneficiary 
     was denied eligibility for coverage if--
       ``(i) the civil action was commenced under subsection 
     (a)(1)(B); and
       ``(ii) the denial of coverage on which such civil action 
     was based constitutes a violation of subsection (a)(1)(F), 
     (b)(3), or (c) of section 702.
       ``(B) Administrative penalty.--
       ``(i) In general.--An administrator who fails to comply 
     with the requirements of subsection (a)(1)(F), (b)(3), or (c) 
     of section 702 with respect to a participant or beneficiary 
     may, in an action commenced under subsection (a)(1)(B), be 
     personally liable in the discretion of the court, for a 
     penalty in the amount not more than $100 for each day in the 
     noncompliance period.
       ``(ii) Noncompliance period.--For purposes of clause (i), 
     the term `noncompliance period' means the period--

       ``(I) beginning on the date that a failure described in 
     clause (i) occurs; and
       ``(II) ending on the date that such failure is corrected.

       ``(iii) Payment to participant or beneficiary.--A penalty 
     collected under this subparagraph shall be paid to the 
     participant or beneficiary involved.
       ``(3) Secretarial enforcement authority.--
       ``(A) General rule.--The Secretary has the authority to 
     impose a penalty on any failure of a group health plan to 
     meet the requirements of subsection (a)(1)(F), (b)(3), or (c) 
     of section 702.
       ``(B) Amount.--
       ``(i) In general.--The amount of the penalty imposed by 
     subparagraph (A) shall be $100 for each day in the 
     noncompliance period with respect to each individual to whom 
     such failure relates.
       ``(ii) Noncompliance period.--For purposes of this 
     paragraph, the term `noncompliance period' means, with 
     respect to any failure, the period--

       ``(I) beginning on the date such failure first occurs; and
       ``(II) ending on the date such failure is corrected.

       ``(C) Minimum penalties where failure discovered.--
     Notwithstanding clauses (i) and (ii) of subparagraph (D):
       ``(i) In general.--In the case of 1 or more failures with 
     respect to an individual--

       ``(I) which are not corrected before the date on which the 
     plan receives a notice from the Secretary of such violation; 
     and
       ``(II) which occurred or continued during the period 
     involved;

     the amount of penalty imposed by subparagraph (A) by reason 
     of such failures with respect to such individual shall not be 
     less than $2,500.
       ``(ii) Higher minimum penalty where violations are more 
     than de minimis.--To the extent violations for which any 
     person is liable under this paragraph for any year are more 
     than de minimis, clause (i) shall be applied by substituting 
     `$15,000' for `$2,500' with respect to such person.
       ``(D) Limitations.--
       ``(i) Penalty not to apply where failure not discovered 
     exercising reasonable diligence.--No penalty shall be imposed 
     by subparagraph (A) on any failure during any period for 
     which it is established to the satisfaction of the Secretary 
     that the person otherwise liable for such penalty did not 
     know, and exercising reasonable diligence would not have 
     known, that such failure existed.
       ``(ii) Penalty not to apply to failures corrected within 
     certain periods.--No penalty

[[Page 2499]]

     shall be imposed by subparagraph (A) on any failure if--

       ``(I) such failure was due to reasonable cause and not to 
     willful neglect; and
       ``(II) such failure is corrected during the 30-day period 
     beginning on the first date the person otherwise liable for 
     such penalty knew, or exercising reasonable diligence would 
     have known, that such failure existed.

       ``(iii) Overall limitation for unintentional failures.--In 
     the case of failures which are due to reasonable cause and 
     not to willful neglect, the penalty imposed by subparagraph 
     (A) for failures shall not exceed the amount equal to the 
     lesser of--

       ``(I) 10 percent of the aggregate amount paid or incurred 
     by the employer (or predecessor employer) during the 
     preceding taxable year for group health plans; or
       ``(II) $500,000.

       ``(E) Waiver by secretary.--In the case of a failure which 
     is due to reasonable cause and not to willful neglect, the 
     Secretary may waive part or all of the penalty imposed by 
     subparagraph (A) to the extent that the payment of such 
     penalty would be excessive relative to the failure 
     involved.''.
       (d) Definitions.--Section 733(d) of the Employee Retirement 
     Income Security Act of 1974 (29 U.S.C. 1191b(d)) is amended 
     by adding at the end the following:
       ``(5) Family member.--The term `family member' means with 
     respect to an individual--
       ``(A) the spouse of the individual;
       ``(B) a dependent child of the individual, including a 
     child who is born to or placed for adoption with the 
     individual; and
       ``(C) all other individuals related by blood to the 
     individual or the spouse or child described in subparagraph 
     (A) or (B).
       ``(6) Genetic information.--
       ``(A) In general.--Except as provided in subparagraph (B), 
     the term `genetic information' means information about--
       ``(i) an individual's genetic tests;
       ``(ii) the genetic tests of family members of the 
     individual; or
       ``(iii) the occurrence of a disease or disorder in family 
     members of the individual.
       ``(B) Exclusions.--The term `genetic information' shall not 
     include information about the sex or age of an individual.
       ``(7) Genetic test.--
       ``(A) In general.--The term `genetic test' means an 
     analysis of human DNA, RNA, chromosomes, proteins, or 
     metabolites, that detects genotypes, mutations, or 
     chromosomal changes.
       ``(B) Exceptions.--The term `genetic test' does not mean--
       ``(i) an analysis of proteins or metabolites that does not 
     detect genotypes, mutations, or chromosomal changes; or
       ``(ii) an analysis of proteins or metabolites that is 
     directly related to a manifested disease, disorder, or 
     pathological condition that could reasonably be detected by a 
     health care professional with appropriate training and 
     expertise in the field of medicine involved.
       ``(8) Genetic services.--The term `genetic services' 
     means--
       ``(A) a genetic test;
       ``(B) genetic counseling (such as obtaining, interpreting, 
     or assessing genetic information); or
       ``(C) genetic education.''.
       (e) Regulations and Effective Date.--
       (1) Regulations.--Not later than 1 year after the date of 
     enactment of this title, the Secretary of Labor shall issue 
     final regulations in an accessible format to carry out the 
     amendments made by this section.
       (2) Effective date.--The amendments made by this section 
     shall apply with respect to group health plans for plan years 
     beginning after the date that is 18 months after the date of 
     enactment of this title.

     SEC. 102. AMENDMENTS TO THE PUBLIC HEALTH SERVICE ACT.

       (a) Amendments Relating to the Group Market.--
       (1) Prohibition of health discrimination on the basis of 
     genetic information or genetic services.--
       (A) No enrollment restriction for genetic services.--
     Section 2702(a)(1)(F) of the Public Health Service Act (42 
     U.S.C. 300gg-1(a)(1)(F)) is amended by inserting before the 
     period the following: ``(including information about a 
     request for or receipt of genetic services by an individual 
     or family member of such individual)''.
       (B) No discrimination in group premiums based on genetic 
     information.--Section 2702(b) of the Public Health Service 
     Act (42 U.S.C. 300gg-1(b)) is amended--
       (i) in paragraph (2)(A), by inserting before the semicolon 
     the following: ``, except as provided in paragraph (3)''; and
       (ii) by adding at the end the following:
       ``(3) No discrimination in group premiums based on genetic 
     information.--For purposes of this section, a group health 
     plan, or a health insurance issuer offering group health 
     insurance coverage in connection with a group health plan, 
     shall not adjust premium or contribution amounts for a group 
     on the basis of genetic information concerning an individual 
     in the group or a family member of the individual (including 
     information about a request for or receipt of genetic 
     services by an individual or family member of such 
     individual).''.
       (2) Limitations on genetic testing.--Section 2702 of the 
     Public Health Service Act (42 U.S.C. 300gg-1) is amended by 
     adding at the end the following:
       ``(c) Genetic Testing.--
       ``(1) Limitation on requesting or requiring genetic 
     testing.--A group health plan, or a health insurance issuer 
     offering health insurance coverage in connection with a group 
     health plan, shall not request or require an individual or a 
     family member of such individual to undergo a genetic test.
       ``(2) Rule of construction.--Nothing in this part shall be 
     construed to--
       ``(A) limit the authority of a health care professional who 
     is providing health care services with respect to an 
     individual to request that such individual or a family member 
     of such individual undergo a genetic test;
       ``(B) limit the authority of a health care professional who 
     is employed by or affiliated with a group health plan or a 
     health insurance issuer and who is providing health care 
     services to an individual as part of a bona fide wellness 
     program to notify such individual of the availability of a 
     genetic test or to provide information to such individual 
     regarding such genetic test; or
       ``(C) authorize or permit a health care professional to 
     require that an individual undergo a genetic test.
       ``(d) Application to All Plans.--The provisions of 
     subsections (a)(1)(F), (b)(3), and (c) shall apply to group 
     health plans and health insurance issuers without regard to 
     section 2721(a).''.
       (3) Remedies and enforcement.--Section 2722(b) of the 
     Public Health Service Act (42 U.S.C. 300gg-22)(b)) is amended 
     by adding at the end the following:
       ``(3) Enforcement authority relating to genetic 
     discrimination.--
       ``(A) General rule.--In the cases described in paragraph 
     (1), notwithstanding the provisions of paragraph (2)(C), the 
     following provisions shall apply with respect to an action 
     under this subsection by the Secretary with respect to any 
     failure of a health insurance issuer in connection with a 
     group health plan, to meet the requirements of subsection 
     (a)(1)(F), (b)(3), or (c) of section 2702.
       ``(B) Amount.--
       ``(i) In general.--The amount of the penalty imposed under 
     this paragraph shall be $100 for each day in the 
     noncompliance period with respect to each individual to whom 
     such failure relates.
       ``(ii) Noncompliance period.--For purposes of this 
     paragraph, the term `noncompliance period' means, with 
     respect to any failure, the period--

       ``(I) beginning on the date such failure first occurs; and
       ``(II) ending on the date such failure is corrected.

       ``(C) Minimum penalties where failure discovered.--
     Notwithstanding clauses (i) and (ii) of subparagraph (D):
       ``(i) In general.--In the case of 1 or more failures with 
     respect to an individual--

       ``(I) which are not corrected before the date on which the 
     plan receives a notice from the Secretary of such violation; 
     and
       ``(II) which occurred or continued during the period 
     involved;

     the amount of penalty imposed by subparagraph (A) by reason 
     of such failures with respect to such individual shall not be 
     less than $2,500.
       ``(ii) Higher minimum penalty where violations are more 
     than de minimis.--To the extent violations for which any 
     person is liable under this paragraph for any year are more 
     than de minimis, clause (i) shall be applied by substituting 
     `$15,000' for `$2,500' with respect to such person.
       ``(D) Limitations.--
       ``(i) Penalty not to apply where failure not discovered 
     exercising reasonable diligence.--No penalty shall be imposed 
     by subparagraph (A) on any failure during any period for 
     which it is established to the satisfaction of the Secretary 
     that the person otherwise liable for such penalty did not 
     know, and exercising reasonable diligence would not have 
     known, that such failure existed.
       ``(ii) Penalty not to apply to failures corrected within 
     certain periods.--No penalty shall be imposed by subparagraph 
     (A) on any failure if--

       ``(I) such failure was due to reasonable cause and not to 
     willful neglect; and
       ``(II) such failure is corrected during the 30-day period 
     beginning on the first date the person otherwise liable for 
     such penalty knew, or exercising reasonable diligence would 
     have known, that such failure existed.

       ``(iii) Overall limitation for unintentional failures.--In 
     the case of failures which are due to reasonable cause and 
     not to willful neglect, the penalty imposed by subparagraph 
     (A) for failures shall not exceed the amount equal to the 
     lesser of--

       ``(I) 10 percent of the aggregate amount paid or incurred 
     by the employer (or predecessor employer) during the 
     preceding taxable year for group health plans; or
       ``(II) $500,000.

       ``(E) Waiver by secretary.--In the case of a failure which 
     is due to reasonable cause and not to willful neglect, the 
     Secretary may waive part or all of the penalty imposed by 
     subparagraph (A) to the extent that the payment of such 
     penalty would be excessive relative to the failure 
     involved.''.
       (4) Definitions.--Section 2791(d) of the Public Health 
     Service Act (42 U.S.C. 300gg-91(d)) is amended by adding at 
     the end the following:
       ``(15) Family member.--The term `family member' means with 
     respect to an individual--
       ``(A) the spouse of the individual;
       ``(B) a dependent child of the individual, including a 
     child who is born to or placed for adoption with the 
     individual; and

[[Page 2500]]

       ``(C) all other individuals related by blood to the 
     individual or the spouse or child described in subparagraph 
     (A) or (B).
       ``(16) Genetic information.--
       ``(A) In general.--Except as provided in subparagraph (B), 
     the term `genetic information' means information about--
       ``(i) an individual's genetic tests;
       ``(ii) the genetic tests of family members of the 
     individual; or
       ``(iii) the occurrence of a disease or disorder in family 
     members of the individual.
       ``(B) Exclusions.--The term `genetic information' shall not 
     include information about the sex or age of an individual.
       ``(17) Genetic test.--
       ``(A) In general.--The term `genetic test' means an 
     analysis of human DNA, RNA, chromosomes, proteins, or 
     metabolites, that detects genotypes, mutations, or 
     chromosomal changes.
       ``(B) Exceptions.--The term `genetic test' does not mean--
       ``(i) an analysis of proteins or metabolites that does not 
     detect genotypes, mutations, or chromosomal changes; or
       ``(ii) an analysis of proteins or metabolites that is 
     directly related to a manifested disease, disorder, or 
     pathological condition that could reasonably be detected by a 
     health care professional with appropriate training and 
     expertise in the field of medicine involved.
       ``(18) Genetic services.--The term `genetic services' 
     means--
       ``(A) a genetic test;
       ``(B) genetic counseling (such as obtaining, interpreting, 
     or assessing genetic information); or
       ``(C) genetic education.''.
       (b) Amendment Relating to the Individual Market.--
       (1) In general.--The first subpart 3 of part B of title 
     XXVII of the Public Health Service Act (42 U.S.C. 300gg-51 et 
     seq.) (relating to other requirements) is amended--
       (A) by redesignating such subpart as subpart 2; and
       (B) by adding at the end the following:

     ``SEC. 2753. PROHIBITION OF HEALTH DISCRIMINATION ON THE 
                   BASIS OF GENETIC INFORMATION.

       ``(a) Prohibition on Genetic Information as a Condition of 
     Eligibility.--A health insurance issuer offering health 
     insurance coverage in the individual market may not establish 
     rules for the eligibility (including continued eligibility) 
     of any individual to enroll in individual health insurance 
     coverage based on genetic information (including information 
     about a request for or receipt of genetic services by an 
     individual or family member of such individual).
       ``(b) Prohibition on Genetic Information in Setting Premium 
     Rates.--A health insurance issuer offering health insurance 
     coverage in the individual market shall not adjust premium or 
     contribution amounts for an individual on the basis of 
     genetic information concerning the individual or a family 
     member of the individual (including information about a 
     request for or receipt of genetic services by an individual 
     or family member of such individual).
       ``(c) Genetic Testing.--
       ``(1) Limitation on requesting or requiring genetic 
     testing.--A health insurance issuer offering health insurance 
     coverage in the individual market shall not request or 
     require an individual or a family member of such individual 
     to undergo a genetic test.
       ``(2) Rule of construction.--Nothing in this part shall be 
     construed to--
       ``(A) limit the authority of a health care professional who 
     is providing health care services with respect to an 
     individual to request that such individual or a family member 
     of such individual undergo a genetic test;
       ``(B) limit the authority of a health care professional who 
     is employed by or affiliated with a health insurance issuer 
     and who is providing health care services to an individual as 
     part of a bona fide wellness program to notify such 
     individual of the availability of a genetic test or to 
     provide information to such individual regarding such genetic 
     test; or
       ``(C) authorize or permit a health care professional to 
     require that an individual undergo a genetic test.''.
       (2) Remedies and enforcement.--Section 2761(b) of the 
     Public Health Service Act (42 U.S.C. 300gg-61)(b)) is amended 
     to read as follows:
       ``(b) Secretarial Enforcement Authority.--The Secretary 
     shall have the same authority in relation to enforcement of 
     the provisions of this part with respect to issuers of health 
     insurance coverage in the individual market in a State as the 
     Secretary has under section 2722(b)(2), and section 
     2722(b)(3) with respect to violations of genetic 
     nondiscrimination provisions, in relation to the enforcement 
     of the provisions of part A with respect to issuers of health 
     insurance coverage in the small group market in the State.''.
       (c) Elimination of Option of Non-Federal Governmental Plans 
     to Be Excepted From Requirements Concerning Genetic 
     Information.--Section 2721(b)(2) of the Public Health Service 
     Act (42 U.S. C. 300gg-21(b)(2)) is amended--
       (1) in subparagraph (A), by striking ``If the plan 
     sponsor'' and inserting ``Except as provided in subparagraph 
     (D), if the plan sponsor''; and
       (2) by adding at the end the following:
       ``(D) Election not applicable to requirements concerning 
     genetic information.--The election described in subparagraph 
     (A) shall not be available with respect to the provisions of 
     subsections (a)(1)(F) and (c) of section 2702 and the 
     provisions of section 2702(b) to the extent that such 
     provisions apply to genetic information (or information about 
     a request for or the receipt of genetic services by an 
     individual or a family member of such individual).''.
       (d) Regulations and Effective Date.--
       (1) Regulations.--Not later than 1 year after the date of 
     enactment of this title, the Secretary of Labor and the 
     Secretary of Health and Human Services (as the case may be) 
     shall issue final regulations in an accessible format to 
     carry out the amendments made by this section.
       (2) Effective date.--The amendments made by this section 
     shall apply--
       (A) with respect to group health plans, and health 
     insurance coverage offered in connection with group health 
     plans, for plan years beginning after the date that is 18 
     months after the date of enactment of this title; and
       (B) with respect to health insurance coverage offered, 
     sold, issued, renewed, in effect, or operated in the 
     individual market after the date that is 18 months after the 
     date of enactment of this title.

     SEC. 103. AMENDMENTS TO THE INTERNAL REVENUE CODE OF 1986.

       (a) Prohibition of Health Discrimination on the Basis of 
     Genetic Information or Genetic Services.--
       (1) No enrollment restriction for genetic services.--
     Section 9802(a)(1)(F) of the Internal Revenue Code of 1986 is 
     amended by inserting before the period the following: 
     ``(including information about a request for or receipt of 
     genetic services by an individual or family member of such 
     individual)''.
       (2) No discrimination in group premiums based on genetic 
     information.--Section 9802(b) of the Internal Revenue Code of 
     1986 is amended--
       (A) in paragraph (2)(A), by inserting before the semicolon 
     the following: ``, except as provided in paragraph (3)''; and
       (B) by adding at the end the following:
       ``(3) No discrimination in group premiums based on genetic 
     information.--For purposes of this section, a group health 
     plan shall not adjust premium or contribution amounts for a 
     group on the basis of genetic information concerning an 
     individual in the group or a family member of the individual 
     (including information about a request for or receipt of 
     genetic services by an individual or family member of such 
     individual).''.
       (b) Limitations on Genetic Testing.--Section 9802 of the 
     Internal Revenue Code of 1986 is amended by adding at the end 
     the following:
       ``(d) Genetic Testing and Genetic Services.--
       ``(1) Limitation on requesting or requiring genetic 
     testing.--A group health plan shall not request or require an 
     individual or a family member of such individual to undergo a 
     genetic test.
       ``(2) Rule of construction.--Nothing in this part shall be 
     construed to--
       ``(A) limit the authority of a health care professional who 
     is providing health care services with respect to an 
     individual to request that such individual or a family member 
     of such individual undergo a genetic test;
       ``(B) limit the authority of a health care professional who 
     is employed by or affiliated with a group health plan and who 
     is providing health care services to an individual as part of 
     a bona fide wellness program to notify such individual of the 
     availability of a genetic test or to provide information to 
     such individual regarding such genetic test; or
       ``(C) authorize or permit a health care professional to 
     require that an individual undergo a genetic test.
       ``(e) Application to All Plans.--The provisions of 
     subsections (a)(1)(F), (b)(3), and (d) shall apply to group 
     health plans and health insurance issuers without regard to 
     section 9831(a)(2).''.
       (c) Definitions.--Section 9832(d) of the Internal Revenue 
     Code of 1986 is amended by adding at the end the following:
       ``(6) Family member.--The term `family member' means with 
     respect to an individual--
       ``(A) the spouse of the individual;
       ``(B) a dependent child of the individual, including a 
     child who is born to or placed for adoption with the 
     individual; and
       ``(C) all other individuals related by blood to the 
     individual or the spouse or child described in subparagraph 
     (A) or (B).
       ``(7) Genetic services.--The term `genetic services' 
     means--
       ``(A) a genetic test;
       ``(B) genetic counseling (such as obtaining, interpreting, 
     or assessing genetic information); or
       ``(C) genetic education.
       ``(8) Genetic information.--
       ``(A) In general.--Except as provided in subparagraph (B), 
     the term `genetic information' means information about--
       ``(i) an individual's genetic tests;
       ``(ii) the genetic tests of family members of the 
     individual; or
       ``(iii) the occurrence of a disease or disorder in family 
     members of the individual.
       ``(B) Exclusions.--The term `genetic information' shall not 
     include information about the sex or age of an individual.
       ``(9) Genetic test.--
       ``(A) In general.--The term `genetic test' means an 
     analysis of human DNA, RNA, chromosomes, proteins, or 
     metabolites, that detects genotypes, mutations, or 
     chromosomal changes.
       ``(B) Exceptions.--The term `genetic test' does not mean--
       ``(i) an analysis of proteins or metabolites that does not 
     detect genotypes, mutations, or chromosomal changes; or

[[Page 2501]]

       ``(ii) an analysis of proteins or metabolites that is 
     directly related to a manifested disease, disorder, or 
     pathological condition that could reasonably be detected by a 
     health care professional with appropriate training and 
     expertise in the field of medicine involved.''.
       (d) Regulations and Effective Date.--
       (1) Regulations.--Not later than 1 year after the date of 
     enactment of this title, the Secretary of the Treasury shall 
     issue final regulations in an accessible format to carry out 
     the amendments made by this section.
       (2) Effective date.--The amendments made by this section 
     shall apply with respect to group health plans for plan years 
     beginning after the date that is 18 months after the date of 
     enactment of this title.

     SEC. 104. AMENDMENTS TO TITLE XVIII OF THE SOCIAL SECURITY 
                   ACT RELATING TO MEDIGAP.

       (a) Nondiscrimination.--
       (1) In general.--Section 1882(s)(2) of the Social Security 
     Act (42 U.S.C. 1395ss(s)(2)) is amended by adding at the end 
     the following:
       ``(E)(i) An issuer of a medicare supplemental policy shall 
     not deny or condition the issuance or effectiveness of the 
     policy, and shall not discriminate in the pricing of the 
     policy (including the adjustment of premium rates) of an 
     eligible individual on the basis of genetic information 
     concerning the individual (or information about a request 
     for, or the receipt of, genetic services by such individual 
     or family member of such individual).
       ``(ii) For purposes of clause (i), the terms `family 
     member', `genetic services', and `genetic information' shall 
     have the meanings given such terms in subsection (x).''.
       (2) Effective date.--The amendment made by paragraph (1) 
     shall apply with respect to a policy for policy years 
     beginning after the date that is 18 months after the date of 
     enactment of this Act.
       (b) Limitations on Genetic Testing.--
       (1) In general.--Section 1882 of the Social Security Act 
     (42 U.S.C. 1395ss) is amended by adding at the end the 
     following:
       ``(x) Limitations on Genetic Testing.--
       ``(1) Genetic testing.--
       ``(A) Limitation on requesting or requiring genetic 
     testing.--An issuer of a medicare supplemental policy shall 
     not request or require an individual or a family member of 
     such individual to undergo a genetic test.
       ``(B) Rule of construction.--Nothing in this title shall be 
     construed to--
       ``(i) limit the authority of a health care professional who 
     is providing health care services with respect to an 
     individual to request that such individual or a family member 
     of such individual undergo a genetic test;
       ``(ii) limit the authority of a health care professional 
     who is employed by or affiliated with an issuer of a medicare 
     supplemental policy and who is providing health care services 
     to an individual as part of a bona fide wellness program to 
     notify such individual of the availability of a genetic test 
     or to provide information to such individual regarding such 
     genetic test; or
       ``(iii) authorize or permit a health care professional to 
     require that an individual undergo a genetic test.
       ``(2) Definitions.--In this subsection:
       ``(A) Family member.--The term `family member' means with 
     respect to an individual--
       ``(i) the spouse of the individual;
       ``(ii) a dependent child of the individual, including a 
     child who is born to or placed for adoption with the 
     individual; or
       ``(iii) any other individuals related by blood to the 
     individual or to the spouse or child described in clause (i) 
     or (ii).
       ``(B) Genetic information.--
       ``(i) In general.--Except as provided in clause (ii), the 
     term `genetic information' means information about--

       ``(I) an individual's genetic tests;
       ``(II) the genetic tests of family members of the 
     individual; or
       ``(III) the occurrence of a disease or disorder in family 
     members of the individual.

       ``(ii) Exclusions.--The term `genetic information' shall 
     not include information about the sex or age of an 
     individual.
       ``(C) Genetic test.--
       ``(i) In general.--The term `genetic test' means an 
     analysis of human DNA, RNA, chromosomes, proteins, or 
     metabolites, that detects genotypes, mutations, or 
     chromosomal changes.
       ``(ii) Exceptions.--The term `genetic test' does not mean--

       ``(I) an analysis of proteins or metabolites that does not 
     detect genotypes, mutations, or chromosomal changes; or
       ``(II) an analysis of proteins or metabolites that is 
     directly related to a manifested disease, disorder, or 
     pathological condition that could reasonably be detected by a 
     health care professional with appropriate training and 
     expertise in the field of medicine involved.

       ``(D) Genetic services.--The term `genetic services' 
     means--
       ``(i) a genetic test;
       ``(ii) genetic counseling (such as obtaining, interpreting, 
     or assessing genetic information); or
       ``(iii) genetic education.
       ``(E) Issuer of a medicare supplemental policy.--The term 
     `issuer of a medicare supplemental policy' includes a third-
     party administrator or other person acting for or on behalf 
     of such issuer.''.
       (2) Conforming amendment.--Section 1882(o) of the Social 
     Security Act (42 U.S.C. 1395ss(o)) is amended by adding at 
     the end the following:
       ``(4) The issuer of the medicare supplemental policy 
     complies with subsection (s)(2)(E) and subsection (x).''.
       (3) Effective date.--The amendments made by this subsection 
     shall apply with respect to an issuer of a medicare 
     supplemental policy for policy years beginning on or after 
     the date that is 18 months after the date of enactment of 
     this Act.
       (c) Transition Provisions.--
       (1) In general.--If the Secretary of Health and Human 
     Services identifies a State as requiring a change to its 
     statutes or regulations to conform its regulatory program to 
     the changes made by this section, the State regulatory 
     program shall not be considered to be out of compliance with 
     the requirements of section 1882 of the Social Security Act 
     due solely to failure to make such change until the date 
     specified in paragraph (4).
       (2) NAIC standards.--If, not later than June 30, 2006, the 
     National Association of Insurance Commissioners (in this 
     subsection referred to as the ``NAIC'') modifies its NAIC 
     Model Regulation relating to section 1882 of the Social 
     Security Act (referred to in such section as the 1991 NAIC 
     Model Regulation, as subsequently modified) to conform to the 
     amendments made by this section, such revised regulation 
     incorporating the modifications shall be considered to be the 
     applicable NAIC model regulation (including the revised NAIC 
     model regulation and the 1991 NAIC Model Regulation) for the 
     purposes of such section.
       (3) Secretary standards.--If the NAIC does not make the 
     modifications described in paragraph (2) within the period 
     specified in such paragraph, the Secretary of Health and 
     Human Services shall, not later than October 1, 2006, make 
     the modifications described in such paragraph and such 
     revised regulation incorporating the modifications shall be 
     considered to be the appropriate regulation for the purposes 
     of such section.
       (4) Date specified.--
       (A) In general.--Subject to subparagraph (B), the date 
     specified in this paragraph for a State is the earlier of--
       (i) the date the State changes its statutes or regulations 
     to conform its regulatory program to the changes made by this 
     section, or
       (ii) October 1, 2006.
       (B) Additional legislative action required.--In the case of 
     a State which the Secretary identifies as--
       (i) requiring State legislation (other than legislation 
     appropriating funds) to conform its regulatory program to the 
     changes made in this section, but
       (ii) having a legislature which is not scheduled to meet in 
     2006 in a legislative session in which such legislation may 
     be considered, the date specified in this paragraph is the 
     first day of the first calendar quarter beginning after the 
     close of the first legislative session of the State 
     legislature that begins on or after July 1, 2006. For 
     purposes of the previous sentence, in the case of a State 
     that has a 2-year legislative session, each year of such 
     session shall be deemed to be a separate regular session of 
     the State legislature.

     SEC. 105. PRIVACY AND CONFIDENTIALITY.

       (a) Applicability.--Except as provided in subsection (d), 
     the provisions of this section shall apply to group health 
     plans, health insurance issuers (including issuers in 
     connection with group health plans or individual health 
     coverage), and issuers of medicare supplemental policies, 
     without regard to--
       (1) section 732(a) of the Employee Retirement Income 
     Security Act of 1974 (29 U.S.C. 1191a(a));
       (2) section 2721(a) of the Public Health Service Act (42 
     U.S.C. 300gg-21(a)); and
       (3) section 9831(a)(2) of the Internal Revenue Code of 
     1986.
       (b) Compliance With Certain Confidentiality Standards With 
     Respect to Genetic Information.--
       (1) In general.--The regulations promulgated by the 
     Secretary of Health and Human Services under part C of title 
     XI of the Social Security Act (42 U.S.C. 1320d et seq.) and 
     section 264 of the Health Insurance Portability and 
     Accountability Act of 1996 (42 U.S.C. 1320d-2 note) shall 
     apply to the use or disclosure of genetic information.
       (2) Prohibition on underwriting and premium rating.--
     Notwithstanding paragraph (1), a group health plan, a health 
     insurance issuer, or issuer of a medicare supplemental policy 
     shall not use or disclose genetic information (including 
     information about a request for or a receipt of genetic 
     services by an individual or family member of such 
     individual) for purposes of underwriting, determinations of 
     eligibility to enroll, premium rating, or the creation, 
     renewal or replacement of a plan, contract or coverage for 
     health insurance or health benefits.
       (c) Prohibition on Collection of Genetic Information.--
       (1) In general.--A group health plan, health insurance 
     issuer, or issuer of a medicare supplemental policy shall not 
     request, require, or purchase genetic information (including 
     information about a request for or a receipt of genetic 
     services by an individual or family member of such 
     individual) for purposes of underwriting, determinations of 
     eligibility to enroll, premium rating, or the creation, 
     renewal or replacement of a plan, contract or coverage for 
     health insurance or health benefits.
       (2) Limitation relating to the collection of genetic 
     information prior to enrollment.--A group health plan, health 
     insurance issuer, or issuer of a medicare supplemental policy 
     shall not request, require, or purchase genetic information 
     (including information about a request for or a receipt of 
     genetic services by an individual or family member of such 
     individual) concerning a participant, beneficiary, or 
     enrollee prior to the enrollment, and in connection with such 
     enrollment, of such individual under the plan, coverage, or 
     policy.

[[Page 2502]]

       (3) Incidental collection.--Where a group health plan, 
     health insurance issuer, or issuer of a medicare supplemental 
     policy obtains genetic information incidental to the 
     requesting, requiring, or purchasing of other information 
     concerning a participant, beneficiary, or enrollee, such 
     request, requirement, or purchase shall not be considered a 
     violation of this subsection if--
       (A) such request, requirement, or purchase is not in 
     violation of paragraph (1); and
       (B) any genetic information (including information about a 
     request for or receipt of genetic services) requested, 
     required, or purchased is not used or disclosed in violation 
     of subsection (b).
       (d) Application of Confidentiality Standards.--The 
     provisions of subsections (b) and (c) shall not apply--
       (1) to group health plans, health insurance issuers, or 
     issuers of medicare supplemental policies that are not 
     otherwise covered under the regulations promulgated by the 
     Secretary of Health and Human Services under part C of title 
     XI of the Social Security Act (42 U.S.C. 1320d et seq.) and 
     section 264 of the Health Insurance Portability and 
     Accountability Act of 1996 (42 U.S.C. 1320d-2 note); and
       (2) to genetic information that is not considered to be 
     individually-identifiable health information under the 
     regulations promulgated by the Secretary of Health and Human 
     Services under part C of title XI of the Social Security Act 
     (42 U.S.C. 1320d et seq.) and section 264 of the Health 
     Insurance Portability and Accountability Act of 1996 (42 
     U.S.C. 1320d-2 note).
       (e) Enforcement.--A group health plan, health insurance 
     issuer, or issuer of a medicare supplemental policy that 
     violates a provision of this section shall be subject to the 
     penalties described in sections 1176 and 1177 of the Social 
     Security Act (42 U.S.C. 1320d-5 and 1320d-6) in the same 
     manner and to the same extent that such penalties apply to 
     violations of part C of title XI of such Act.
       (f) Preemption.--
       (1) In general.--A provision or requirement under this 
     section or a regulation promulgated under this section shall 
     supersede any contrary provision of State law unless such 
     provision of State law imposes requirements, standards, or 
     implementation specifications that are more stringent than 
     the requirements, standards, or implementation specifications 
     imposed under this section or such regulations. No penalty, 
     remedy, or cause of action to enforce such a State law that 
     is more stringent shall be preempted by this section.
       (2) Rule of construction.--Nothing in paragraph (1) shall 
     be construed to establish a penalty, remedy, or cause of 
     action under State law if such penalty, remedy, or cause of 
     action is not otherwise available under such State law.
       (g) Coordination With Privacy Regulations.--The Secretary 
     shall implement and administer this section in a manner that 
     is consistent with the implementation and administration by 
     the Secretary of the regulations promulgated by the Secretary 
     of Health and Human Services under part C of title XI of the 
     Social Security Act (42 U.S.C. 1320d et seq.) and section 264 
     of the Health Insurance Portability and Accountability Act of 
     1996 (42 U.S.C. 1320d-2 note).
       (h) Definitions.--In this section:
       (1) Genetic information; genetic services.--The terms 
     ``family member'', ``genetic information'', ``genetic 
     services'', and ``genetic test'' have the meanings given such 
     terms in section 2791 of the Public Health Service Act (42 
     U.S.C. 300gg-91), as amended by this Act.
       (2) Group health plan; health insurance issuer.--The terms 
     ``group health plan'' and ``health insurance issuer'' include 
     only those plans and issuers that are covered under the 
     regulations described in subsection (d)(1).
       (3) Issuer of a medicare supplemental policy.--The term 
     ``issuer of a medicare supplemental policy'' means an issuer 
     described in section 1882 of the Social Security Act (42 
     insert 1395ss).
       (4) Secretary.--The term ``Secretary'' means the Secretary 
     of Health and Human Services.

     SEC. 106. ASSURING COORDINATION.

       (a) In General.--Except as provided in subsection (b), the 
     Secretary of the Treasury, the Secretary of Health and Human 
     Services, and the Secretary of Labor shall ensure, through 
     the execution of an interagency memorandum of understanding 
     among such Secretaries, that--
       (1) regulations, rulings, and interpretations issued by 
     such Secretaries relating to the same matter over which two 
     or more such Secretaries have responsibility under this title 
     (and the amendments made by this title) are administered so 
     as to have the same effect at all times; and
       (2) coordination of policies relating to enforcing the same 
     requirements through such Secretaries in order to have a 
     coordinated enforcement strategy that avoids duplication of 
     enforcement efforts and assigns priorities in enforcement.
       (b) Authority of the Secretary.--The Secretary of Health 
     and Human Services has the sole authority to promulgate 
     regulations to implement section 105.

     SEC. 107. REGULATIONS; EFFECTIVE DATE.

       (a) Regulations.--Not later than 1 year after the date of 
     enactment of this title, the Secretary of Labor, the 
     Secretary of Health and Human Services, and the Secretary of 
     the Treasury shall issue final regulations in an accessible 
     format to carry out this title.
       (b) Effective Date.--Except as provided in section 104, the 
     amendments made by this title shall take effect on the date 
     that is 18 months after the date of enactment of this Act.
TITLE II--PROHIBITING EMPLOYMENT DISCRIMINATION ON THE BASIS OF GENETIC 
                              INFORMATION

     SEC. 201. DEFINITIONS.

       In this title:
       (1) Commission.--The term ``Commission'' means the Equal 
     Employment Opportunity Commission as created by section 705 
     of the Civil Rights Act of 1964 (42 U.S.C. 2000e-4).
       (2) Employee; employer; employment agency; labor 
     organization; member.--
       (A) In general.--The term ``employee'' means--
       (i) an employee (including an applicant), as defined in 
     section 701(f) of the Civil Rights Act of 1964 (42 U.S.C. 
     2000e(f));
       (ii) a State employee (including an applicant) described in 
     section 304(a) of the Government Employee Rights Act of 1991 
     (42 U.S.C. 2000e-16c(a));
       (iii) a covered employee (including an applicant), as 
     defined in section 101 of the Congressional Accountability 
     Act of 1995 (2 U.S.C. 1301);
       (iv) a covered employee (including an applicant), as 
     defined in section 411(c) of title 3, United States Code; or
       (v) an employee or applicant to which section 717(a) of the 
     Civil Rights Act of 1964 (42 U.S.C. 2000e-16(a)) applies.
       (B) Employer.--The term ``employer'' means--
       (i) an employer (as defined in section 701(b) of the Civil 
     Rights Act of 1964 (42 U.S.C. 2000e(b));
       (ii) an entity employing a State employee described in 
     section 304(a) of the Government Employee Rights Act of 1991;
       (iii) an employing office, as defined in section 101 of the 
     Congressional Accountability Act of 1995;
       (iv) an employing office, as defined in section 411(c) of 
     title 3, United States Code; or
       (v) an entity to which section 717(a) of the Civil Rights 
     Act of 1964 applies.
       (C) Employment agency; labor organization.--The terms 
     ``employment agency'' and ``labor organization'' have the 
     meanings given the terms in section 701 of the Civil Rights 
     Act of 1964 (42 U.S.C. 2000e).
       (D) Member.--The term ``member'', with respect to a labor 
     organization, includes an applicant for membership in a labor 
     organization.
       (3) Family member.--The term ``family member'' means with 
     respect to an individual--
       (A) the spouse of the individual;
       (B) a dependent child of the individual, including a child 
     who is born to or placed for adoption with the individual; 
     and
       (C) all other individuals related by blood to the 
     individual or the spouse or child described in subparagraph 
     (A) or (B).
       (4) Genetic information.--
       (A) In general.--Except as provided in subparagraph (B), 
     the term ``genetic information'' means information about--
       (i) an individual's genetic tests;
       (ii) the genetic tests of family members of the individual; 
     or
       (iii) the occurrence of a disease or disorder in family 
     members of the individual.
       (B) Exceptions.--The term ``genetic information'' shall not 
     include information about the sex or age of an individual.
       (5) Genetic monitoring.--The term ``genetic monitoring'' 
     means the periodic examination of employees to evaluate 
     acquired modifications to their genetic material, such as 
     chromosomal damage or evidence of increased occurrence of 
     mutations, that may have developed in the course of 
     employment due to exposure to toxic substances in the 
     workplace, in order to identify, evaluate, and respond to the 
     effects of or control adverse environmental exposures in the 
     workplace.
       (6) Genetic services.--The term ``genetic services'' 
     means--
       (A) a genetic test;
       (B) genetic counseling (such as obtaining, interpreting or 
     assessing genetic information); or
       (C) genetic education.
       (7) Genetic test.--
       (A) In general.--The term ``genetic test'' means the 
     analysis of human DNA, RNA, chromosomes, proteins, or 
     metabolites, that detects genotypes, mutations, or 
     chromosomal changes.
       (B) Exception.--The term ``genetic test'' does not mean an 
     analysis of proteins or metabolites that does not detect 
     genotypes, mutations, or chromosomal changes.

     SEC. 202. EMPLOYER PRACTICES.

       (a) Use of Genetic Information.--It shall be an unlawful 
     employment practice for an employer--
       (1) to fail or refuse to hire or to discharge any employee, 
     or otherwise to discriminate against any employee with 
     respect to the compensation, terms, conditions, or privileges 
     of employment of the employee, because of genetic information 
     with respect to the employee (or information about a request 
     for or the receipt of genetic services by such employee or 
     family member of such employee); or
       (2) to limit, segregate, or classify the employees of the 
     employer in any way that would deprive or tend to deprive any 
     employee of employment opportunities or otherwise adversely 
     affect the status of the employee as an employee, because of 
     genetic information with respect to the employee (or 
     information about a request for or the receipt of genetic 
     services by such employee or family member of such employee).
       (b) Acquisition of Genetic Information.--It shall be an 
     unlawful employment practice for an employer to request, 
     require, or purchase genetic information with respect to an 
     employee or a family member of the employee (or information 
     about a request for the receipt of genetic services by such 
     employee or a family member of such employee) except--

[[Page 2503]]

       (1) where an employer inadvertently requests or requires 
     family medical history of the employee or family member of 
     the employee;
       (2) where--
       (A) health or genetic services are offered by the employer, 
     including such services offered as part of a bona fide 
     wellness program;
       (B) the employee provides prior, knowing, voluntary, and 
     written authorization;
       (C) only the employee (or family member if the family 
     member is receiving genetic services) and the licensed health 
     care professional or board certified genetic counselor 
     involved in providing such services receive individually 
     identifiable information concerning the results of such 
     services; and
       (D) any individually identifiable genetic information 
     provided under subparagraph (C) in connection with the 
     services provided under subparagraph (A) is only available 
     for purposes of such services and shall not be disclosed to 
     the employer except in aggregate terms that do not disclose 
     the identity of specific employees;
       (3) where an employer requests or requires family medical 
     history from the employee to comply with the certification 
     provisions of section 103 of the Family and Medical Leave Act 
     of 1993 (29 U.S.C. 2613) or such requirements under State 
     family and medical leave laws;
       (4) where an employer purchases documents that are 
     commercially and publicly available (including newspapers, 
     magazines, periodicals, and books, but not including medical 
     databases or court records) that include family medical 
     history; or
       (5) where the information involved is to be used for 
     genetic monitoring of the biological effects of toxic 
     substances in the workplace, but only if--
       (A) the employer provides written notice of the genetic 
     monitoring to the employee;
       (B)(i) the employee provides prior, knowing, voluntary, and 
     written authorization; or
       (ii) the genetic monitoring is required by Federal or State 
     law;
       (C) the employee is informed of individual monitoring 
     results;
       (D) the monitoring is in compliance with--
       (i) any Federal genetic monitoring regulations, including 
     any such regulations that may be promulgated by the Secretary 
     of Labor pursuant to the Occupational Safety and Health Act 
     of 1970 (29 U.S.C. 651 et seq.), the Federal Mine Safety and 
     Health Act of 1977 (30 U.S.C. 801 et seq.), or the Atomic 
     Energy Act of 1954 (42 U.S.C. 2011 et seq.); or
       (ii) State genetic monitoring regulations, in the case of a 
     State that is implementing genetic monitoring regulations 
     under the authority of the Occupational Safety and Health Act 
     of 1970 (29 U.S.C. 651 et seq.); and
       (E) the employer, excluding any licensed health care 
     professional or board certified genetic counselor that is 
     involved in the genetic monitoring program, receives the 
     results of the monitoring only in aggregate terms that do not 
     disclose the identity of specific employees;
       (c) Preservation of Protections.--In the case of 
     information to which any of paragraphs (1) through (5) of 
     subsection (b) applies, such information may not be used in 
     violation of paragraph (1) or (2) of subsection (a) or 
     treated or disclosed in a manner that violates section 206.

     SEC. 203. EMPLOYMENT AGENCY PRACTICES.

       (a) Use of Genetic Information.--It shall be an unlawful 
     employment practice for an employment agency--
       (1) to fail or refuse to refer for employment, or otherwise 
     to discriminate against, any individual because of genetic 
     information with respect to the individual (or information 
     about a request for or the receipt of genetic services by 
     such individual or family member of such individual);
       (2) to limit, segregate, or classify individuals or fail or 
     refuse to refer for employment any individual in any way that 
     would deprive or tend to deprive any individual of employment 
     opportunities, or otherwise adversely affect the status of 
     the individual as an employee, because of genetic information 
     with respect to the individual (or information about a 
     request for or the receipt of genetic services by such 
     individual or family member of such individual); or
       (3) to cause or attempt to cause an employer to 
     discriminate against an individual in violation of this 
     title.
       (b) Acquisition of Genetic Information.--It shall be an 
     unlawful employment practice for an employment agency to 
     request, require, or purchase genetic information with 
     respect to an individual or a family member of the individual 
     (or information about a request for the receipt of genetic 
     services by such individual or a family member of such 
     individual) except--
       (1) where an employment agency inadvertently requests or 
     requires family medical history of the individual or family 
     member of the individual;
       (2) where--
       (A) health or genetic services are offered by the 
     employment agency, including such services offered as part of 
     a bona fide wellness program;
       (B) the individual provides prior, knowing, voluntary, and 
     written authorization;
       (C) only the individual (or family member if the family 
     member is receiving genetic services) and the licensed health 
     care professional or board certified genetic counselor 
     involved in providing such services receive individually 
     identifiable information concerning the results of such 
     services; and
       (D) any individually identifiable genetic information 
     provided under subparagraph (C) in connection with the 
     services provided under subparagraph (A) is only available 
     for purposes of such services and shall not be disclosed to 
     the employment agency except in aggregate terms that do not 
     disclose the identity of specific individuals;
       (3) where an employment agency requests or requires family 
     medical history from the individual to comply with the 
     certification provisions of section 103 of the Family and 
     Medical Leave Act of 1993 (29 U.S.C. 2613) or such 
     requirements under State family and medical leave laws;
       (4) where an employment agency purchases documents that are 
     commercially and publicly available (including newspapers, 
     magazines, periodicals, and books, but not including medical 
     databases or court records) that include family medical 
     history; or
       (5) where the information involved is to be used for 
     genetic monitoring of the biological effects of toxic 
     substances in the workplace, but only if--
       (A) the employment agency provides written notice of the 
     genetic monitoring to the individual;
       (B)(i) the individual provides prior, knowing, voluntary, 
     and written authorization; or
       (ii) the genetic monitoring is required by Federal or State 
     law;
       (C) the individual is informed of individual monitoring 
     results;
       (D) the monitoring is in compliance with--
       (i) any Federal genetic monitoring regulations, including 
     any such regulations that may be promulgated by the Secretary 
     of Labor pursuant to the Occupational Safety and Health Act 
     of 1970 (29 U.S.C. 651 et seq.), the Federal Mine Safety and 
     Health Act of 1977 (30 U.S.C. 801 et seq.), or the Atomic 
     Energy Act of 1954 (42 U.S.C. 2011 et seq.); or
       (ii) State genetic monitoring regulations, in the case of a 
     State that is implementing genetic monitoring regulations 
     under the authority of the Occupational Safety and Health Act 
     of 1970 (29 U.S.C. 651 et seq.); and
       (E) the employment agency, excluding any licensed health 
     care professional or board certified genetic counselor that 
     is involved in the genetic monitoring program, receives the 
     results of the monitoring only in aggregate terms that do not 
     disclose the identity of specific individuals;
       (c) Preservation of Protections.--In the case of 
     information to which any of paragraphs (1) through (5) of 
     subsection (b) applies, such information may not be used in 
     violation of paragraph (1) or (2) of subsection (a) or 
     treated or disclosed in a manner that violates section 206.

     SEC. 204. LABOR ORGANIZATION PRACTICES.

       (a) Use of Genetic Information.--It shall be an unlawful 
     employment practice for a labor organization--
       (1) to exclude or to expel from the membership of the 
     organization, or otherwise to discriminate against, any 
     member because of genetic information with respect to the 
     member (or information about a request for or the receipt of 
     genetic services by such member or family member of such 
     member);
       (2) to limit, segregate, or classify the members of the 
     organization, or fail or refuse to refer for employment any 
     member, in any way that would deprive or tend to deprive any 
     member of employment opportunities, or otherwise adversely 
     affect the status of the member as an employee, because of 
     genetic information with respect to the member (or 
     information about a request for or the receipt of genetic 
     services by such member or family member of such member); or
       (3) to cause or attempt to cause an employer to 
     discriminate against a member in violation of this title.
       (b) Acquisition of Genetic Information.--It shall be an 
     unlawful employment practice for a labor organization to 
     request, require, or purchase genetic information with 
     respect to a member or a family member of the member (or 
     information about a request for the receipt of genetic 
     services by such member or a family member of such member) 
     except--
       (1) where a labor organization inadvertently requests or 
     requires family medical history of the member or family 
     member of the member;
       (2) where--
       (A) health or genetic services are offered by the labor 
     organization, including such services offered as part of a 
     bona fide wellness program;
       (B) the member provides prior, knowing, voluntary, and 
     written authorization;
       (C) only the member (or family member if the family member 
     is receiving genetic services) and the licensed health care 
     professional or board certified genetic counselor involved in 
     providing such services receive individually identifiable 
     information concerning the results of such services; and
       (D) any individually identifiable genetic information 
     provided under subparagraph (C) in connection with the 
     services provided under subparagraph (A) is only available 
     for purposes of such services and shall not be disclosed to 
     the labor organization except in aggregate terms that do not 
     disclose the identity of specific members;
       (3) where a labor organization requests or requires family 
     medical history from the members to comply with the 
     certification provisions of section 103 of the Family and 
     Medical Leave Act of 1993 (29 U.S.C. 2613) or such 
     requirements under State family and medical leave laws;
       (4) where a labor organization purchases documents that are 
     commercially and publicly available (including newspapers, 
     magazines, periodicals, and books, but not including medical 
     databases or court records) that include family medical 
     history; or

[[Page 2504]]

       (5) where the information involved is to be used for 
     genetic monitoring of the biological effects of toxic 
     substances in the workplace, but only if--
       (A) the labor organization provides written notice of the 
     genetic monitoring to the member;
       (B)(i) the member provides prior, knowing, voluntary, and 
     written authorization; or
       (ii) the genetic monitoring is required by Federal or State 
     law;
       (C) the member is informed of individual monitoring 
     results;
       (D) the monitoring is in compliance with--
       (i) any Federal genetic monitoring regulations, including 
     any such regulations that may be promulgated by the Secretary 
     of Labor pursuant to the Occupational Safety and Health Act 
     of 1970 (29 U.S.C. 651 et seq.), the Federal Mine Safety and 
     Health Act of 1977 (30 U.S.C. 801 et seq.), or the Atomic 
     Energy Act of 1954 (42 U.S.C. 2011 et seq.); or
       (ii) State genetic monitoring regulations, in the case of a 
     State that is implementing genetic monitoring regulations 
     under the authority of the Occupational Safety and Health Act 
     of 1970 (29 U.S.C. 651 et seq.); and
       (E) the labor organization, excluding any licensed health 
     care professional or board certified genetic counselor that 
     is involved in the genetic monitoring program, receives the 
     results of the monitoring only in aggregate terms that do not 
     disclose the identity of specific members;
       (c) Preservation of Protections.--In the case of 
     information to which any of paragraphs (1) through (5) of 
     subsection (b) applies, such information may not be used in 
     violation of paragraph (1) or (2) of subsection (a) or 
     treated or disclosed in a manner that violates section 206.

     SEC. 205. TRAINING PROGRAMS.

       (a) Use of Genetic Information.--It shall be an unlawful 
     employment practice for any employer, labor organization, or 
     joint labor-management committee controlling apprenticeship 
     or other training or retraining, including on-the-job 
     training programs--
       (1) to discriminate against any individual because of 
     genetic information with respect to the individual (or 
     information about a request for or the receipt of genetic 
     services by such individual or a family member of such 
     individual) in admission to, or employment in, any program 
     established to provide apprenticeship or other training or 
     retraining;
       (2) to limit, segregate, or classify the applicants for or 
     participants in such apprenticeship or other training or 
     retraining, or fail or refuse to refer for employment any 
     individual, in any way that would deprive or tend to deprive 
     any individual of employment opportunities, or otherwise 
     adversely affect the status of the individual as an employee, 
     because of genetic information with respect to the individual 
     (or information about a request for or receipt of genetic 
     services by such individual or family member of such 
     individual); or
       (3) to cause or attempt to cause an employer to 
     discriminate against an applicant for or a participant in 
     such apprenticeship or other training or retraining in 
     violation of this title.
       (b) Acquisition of Genetic Information.--It shall be an 
     unlawful employment practice for an employer, labor 
     organization, or joint labor-management committee described 
     in subsection (a) to request, require, or purchase genetic 
     information with respect to an individual or a family member 
     of the individual (or information about a request for the 
     receipt of genetic services by such individual or a family 
     member of such individual) except--
       (1) where the employer, labor organization, or joint labor-
     management committee inadvertently requests or requires 
     family medical history of the individual or family member of 
     the individual;
       (2) where--
       (A) health or genetic services are offered by the employer, 
     labor organization, or joint labor-management committee, 
     including such services offered as part of a bona fide 
     wellness program;
       (B) the individual provides prior, knowing, voluntary, and 
     written authorization;
       (C) only the individual (or family member if the family 
     member is receiving genetic services) and the licensed health 
     care professional or board certified genetic counselor 
     involved in providing such services receive individually 
     identifiable information concerning the results of such 
     services;
       (D) any individually identifiable genetic information 
     provided under subparagraph (C) in connection with the 
     services provided under subparagraph (A) is only available 
     for purposes of such services and shall not be disclosed to 
     the employer, labor organization, or joint labor-management 
     committee except in aggregate terms that do not disclose the 
     identity of specific individuals;
       (3) where the employer, labor organization, or joint labor-
     management committee requests or requires family medical 
     history from the individual to comply with the certification 
     provisions of section 103 of the Family and Medical Leave Act 
     of 1993 (29 U.S.C. 2613) or such requirements under State 
     family and medical leave laws;
       (4) where the employer, labor organization, or joint labor-
     management committee purchases documents that are 
     commercially and publicly available (including newspapers, 
     magazines, periodicals, and books, but not including medical 
     databases or court records) that include family medical 
     history; or
       (5) where the information involved is to be used for 
     genetic monitoring of the biological effects of toxic 
     substances in the workplace, but only if--
       (A) the employer, labor organization, or joint labor-
     management committee provides written notice of the genetic 
     monitoring to the individual;
       (B)(i) the individual provides prior, knowing, voluntary, 
     and written authorization; or
       (ii) the genetic monitoring is required by Federal or State 
     law;
       (C) the individual is informed of individual monitoring 
     results;
       (D) the monitoring is in compliance with--
       (i) any Federal genetic monitoring regulations, including 
     any such regulations that may be promulgated by the Secretary 
     of Labor pursuant to the Occupational Safety and Health Act 
     of 1970 (29 U.S.C. 651 et seq.), the Federal Mine Safety and 
     Health Act of 1977 (30 U.S.C. 801 et seq.), or the Atomic 
     Energy Act of 1954 (42 U.S.C. 2011 et seq.); or
       (ii) State genetic monitoring regulations, in the case of a 
     State that is implementing genetic monitoring regulations 
     under the authority of the Occupational Safety and Health Act 
     of 1970 (29 U.S.C. 651 et seq.); and
       (E) the employer, labor organization, or joint labor-
     management committee, excluding any licensed health care 
     professional or board certified genetic counselor that is 
     involved in the genetic monitoring program, receives the 
     results of the monitoring only in aggregate terms that do not 
     disclose the identity of specific individuals;
       (c) Preservation of Protections.--In the case of 
     information to which any of paragraphs (1) through (5) of 
     subsection (b) applies, such information may not be used in 
     violation of paragraph (1) or (2) of subsection (a) or 
     treated or disclosed in a manner that violates section 206.

     SEC. 206. CONFIDENTIALITY OF GENETIC INFORMATION.

       (a) Treatment of Information as Part of Confidential 
     Medical Record.--If an employer, employment agency, labor 
     organization, or joint labor-management committee possesses 
     genetic information about an employee or member (or 
     information about a request for or receipt of genetic 
     services by such employee or member or family member of such 
     employee or member), such information shall be maintained on 
     separate forms and in separate medical files and be treated 
     as a confidential medical record of the employee or member.
       (b) Limitation on Disclosure.--An employer, employment 
     agency, labor organization, or joint labor-management 
     committee shall not disclose genetic information concerning 
     an employee or member (or information about a request for or 
     receipt of genetic services by such employee or member or 
     family member of such employee or member) except--
       (1) to the employee (or family member if the family member 
     is receiving the genetic services) or member of a labor 
     organization at the request of the employee or member of such 
     organization;
       (2) to an occupational or other health researcher if the 
     research is conducted in compliance with the regulations and 
     protections provided for under part 46 of title 45, Code of 
     Federal Regulations;
       (3) in response to an order of a court, except that--
       (A) the employer, employment agency, labor organization, or 
     joint labor-management committee may disclose only the 
     genetic information expressly authorized by such order; and
       (B) if the court order was secured without the knowledge of 
     the employee or member to whom the information refers, the 
     employer, employment agency, labor organization, or joint 
     labor-management committee shall provide the employee or 
     member with adequate notice to challenge the court order;
       (4) to government officials who are investigating 
     compliance with this title if the information is relevant to 
     the investigation; or
       (5) to the extent that such disclosure is made in 
     connection with the employee's compliance with the 
     certification provisions of section 103 of the Family and 
     Medical Leave Act of 1993 (29 U.S.C. 2613) or such 
     requirements under State family and medical leave laws.

     SEC. 207. REMEDIES AND ENFORCEMENT.

       (a) Employees Covered by Title VII of the Civil Rights Act 
     of 1964.--
       (1) In general.--The powers, remedies, and procedures 
     provided in sections 705, 706, 707, 709, 710, and 711 of the 
     Civil Rights Act of 1964 (42 U.S.C. 2000e-4 et seq.) to the 
     Commission, the Attorney General, or any person, alleging a 
     violation of title VII of that Act (42 U.S.C. 2000e et seq.) 
     shall be the powers, remedies, and procedures this title 
     provides to the Commission, the Attorney General, or any 
     person, respectively, alleging an unlawful employment 
     practice in violation of this title against an employee 
     described in section 201(2)(A)(i), except as provided in 
     paragraphs (2) and (3).
       (2) Costs and fees.--The powers, remedies, and procedures 
     provided in subsections (b) and (c) of section 722 of the 
     Revised Statutes (42 U.S.C. 1988), shall be powers, remedies, 
     and procedures this title provides to the Commission, the 
     Attorney General, or any person, alleging such a practice.
       (3) Damages.--The powers, remedies, and procedures provided 
     in section 1977A of the Revised Statutes (42 U.S.C. 1981a), 
     including the limitations contained in subsection (b)(3) of 
     such section 1977A, shall be powers, remedies, and procedures 
     this title provides to the Commission, the Attorney General, 
     or any person, alleging such a practice (not an employment 
     practice specifically excluded from coverage under section 
     1977A(a)(1) of the Revised Statutes).
       (b) Employees Covered by Government Employee Rights Act of 
     1991.--

[[Page 2505]]

       (1) In general.--The powers, remedies, and procedures 
     provided in sections 302 and 304 of the Government Employee 
     Rights Act of 1991 (42 U.S.C. 2000e-16b, 2000e-16c) to the 
     Commission, or any person, alleging a violation of section 
     302(a)(1) of that Act (42 U.S.C. 2000e-16b(a)(1)) shall be 
     the powers, remedies, and procedures this title provides to 
     the Commission, or any person, respectively, alleging an 
     unlawful employment practice in violation of this title 
     against an employee described in section 201(2)(A)(ii), 
     except as provided in paragraphs (2) and (3).
       (2) Costs and fees.--The powers, remedies, and procedures 
     provided in subsections (b) and (c) of section 722 of the 
     Revised Statutes (42 U.S.C. 1988), shall be powers, remedies, 
     and procedures this title provides to the Commission, or any 
     person, alleging such a practice.
       (3) Damages.--The powers, remedies, and procedures provided 
     in section 1977A of the Revised Statutes (42 U.S.C. 1981a), 
     including the limitations contained in subsection (b)(3) of 
     such section 1977A, shall be powers, remedies, and procedures 
     this title provides to the Commission, or any person, 
     alleging such a practice (not an employment practice 
     specifically excluded from coverage under section 1977A(a)(1) 
     of the Revised Statutes).
       (c) Employees Covered by Congressional Accountability Act 
     of 1995.--
       (1) In general.--The powers, remedies, and procedures 
     provided in the Congressional Accountability Act of 1995 (2 
     U.S.C. 1301 et seq.) to the Board (as defined in section 101 
     of that Act (2 U.S.C. 1301)), or any person, alleging a 
     violation of section 201(a)(1) of that Act (42 U.S.C. 
     1311(a)(1)) shall be the powers, remedies, and procedures 
     this title provides to that Board, or any person, alleging an 
     unlawful employment practice in violation of this title 
     against an employee described in section 201(2)(A)(iii), 
     except as provided in paragraphs (2) and (3).
       (2) Costs and fees.--The powers, remedies, and procedures 
     provided in subsections (b) and (c) of section 722 of the 
     Revised Statutes (42 U.S.C. 1988), shall be powers, remedies, 
     and procedures this title provides to that Board, or any 
     person, alleging such a practice.
       (3) Damages.--The powers, remedies, and procedures provided 
     in section 1977A of the Revised Statutes (42 U.S.C. 1981a), 
     including the limitations contained in subsection (b)(3) of 
     such section 1977A, shall be powers, remedies, and procedures 
     this title provides to that Board, or any person, alleging 
     such a practice (not an employment practice specifically 
     excluded from coverage under section 1977A(a)(1) of the 
     Revised Statutes).
       (4) Other applicable provisions.--With respect to a claim 
     alleging a practice described in paragraph (1), title III of 
     the Congressional Accountability Act of 1995 (2 U.S.C. 1381 
     et seq.) shall apply in the same manner as such title applies 
     with respect to a claim alleging a violation of section 
     201(a)(1) of such Act (2 U.S.C. 1311(a)(1)).
       (d) Employees Covered by Chapter 5 of Title 3, United 
     States Code.--
       (1) In general.--The powers, remedies, and procedures 
     provided in chapter 5 of title 3, United States Code, to the 
     President, the Commission, the Merit Systems Protection 
     Board, or any person, alleging a violation of section 
     411(a)(1) of that title, shall be the powers, remedies, and 
     procedures this title provides to the President, the 
     Commission, such Board, or any person, respectively, alleging 
     an unlawful employment practice in violation of this title 
     against an employee described in section 201(2)(A)(iv), 
     except as provided in paragraphs (2) and (3).
       (2) Costs and fees.--The powers, remedies, and procedures 
     provided in subsections (b) and (c) of section 722 of the 
     Revised Statutes (42 U.S.C. 1988), shall be powers, remedies, 
     and procedures this title provides to the President, the 
     Commission, such Board, or any person, alleging such a 
     practice.
       (3) Damages.--The powers, remedies, and procedures provided 
     in section 1977A of the Revised Statutes (42 U.S.C. 1981a), 
     including the limitations contained in subsection (b)(3) of 
     such section 1977A, shall be powers, remedies, and procedures 
     this title provides to the President, the Commission, such 
     Board, or any person, alleging such a practice (not an 
     employment practice specifically excluded from coverage under 
     section 1977A(a)(1) of the Revised Statutes).
       (e) Employees Covered by Section 717 of the Civil Rights 
     Act of 1964.--
       (1) In general.--The powers, remedies, and procedures 
     provided in section 717 of the Civil Rights Act of 1964 (42 
     U.S.C. 2000e-16) to the Commission, the Attorney General, the 
     Librarian of Congress, or any person, alleging a violation of 
     that section shall be the powers, remedies, and procedures 
     this title provides to the Commission, the Attorney General, 
     the Librarian of Congress, or any person, respectively, 
     alleging an unlawful employment practice in violation of this 
     title against an employee or applicant described in section 
     201(2)(A)(v), except as provided in paragraphs (2) and (3).
       (2) Costs and fees.--The powers, remedies, and procedures 
     provided in subsections (b) and (c) of section 722 of the 
     Revised Statutes (42 U.S.C. 1988), shall be powers, remedies, 
     and procedures this title provides to the Commission, the 
     Attorney General, the Librarian of Congress, or any person, 
     alleging such a practice.
       (3) Damages.--The powers, remedies, and procedures provided 
     in section 1977A of the Revised Statutes (42 U.S.C. 1981a), 
     including the limitations contained in subsection (b)(3) of 
     such section 1977A, shall be powers, remedies, and procedures 
     this title provides to the Commission, the Attorney General, 
     the Librarian of Congress, or any person, alleging such a 
     practice (not an employment practice specifically excluded 
     from coverage under section 1977A(a)(1) of the Revised 
     Statutes).
       (f) Definition.--In this section, the term ``Commission'' 
     means the Equal Employment Opportunity Commission.

     SEC. 208. DISPARATE IMPACT.

       (a) General Rule.--Notwithstanding any other provision of 
     this Act, ``disparate impact'', as that term is used in 
     section 703(k) of the Civil Rights Act of 1964 (42 U.S.C. 
     2000e-d(k)), on the basis of genetic information does not 
     establish a cause of action under this Act.
       (b) Commission.--On the date that is 6 years after the date 
     of enactment of this Act, there shall be established a 
     commission, to be known as the Genetic Nondiscrimination 
     Study Commission (referred to in this section as the 
     ``Commission'') to review the developing science of genetics 
     and to make recommendations to Congress regarding whether to 
     provide a disparate impact cause of action under this Act.
       (c) Membership.--
       (1) In general.--The Commission shall be composed of 8 
     members, of which--
       (A) 1 member shall be appointed by the Majority Leader of 
     the Senate;
       (B) 1 member shall be appointed by the Minority Leader of 
     the Senate;
       (C) 1 member shall be appointed by the Chairman of the 
     Committee on Health, Education, Labor, and Pensions of the 
     Senate;
       (D) 1 member shall be appointed by the ranking minority 
     member of the Committee on Health, Education, Labor, and 
     Pensions of the Senate;
       (E) 1 member shall be appointed by the Speaker of the House 
     of Representatives;
       (F) 1 member shall be appointed by the Minority Leader of 
     the House of Representatives;
       (G) 1 member shall be appointed by the Chairman of the 
     Committee on Education and the Workforce of the House of 
     Representatives; and
       (H) 1 member shall be appointed by the ranking minority 
     member of the Committee on Education and the Workforce of the 
     House of Representatives.
       (2) Compensation and expenses.--The members of the 
     Commission shall not receive compensation for the performance 
     of services for the Commission, but shall be allowed travel 
     expenses, including per diem in lieu of subsistence, at rates 
     authorized for employees of agencies under subchapter I of 
     chapter 57 of title 5, United States Code, while away from 
     their homes or regular places of business in the performance 
     of services for the Commission.
       (d) Administrative Provisions.--
       (1) Location.--The Commission shall be located in a 
     facility maintained by the Equal Employment Opportunity 
     Commission.
       (2) Detail of government employees.--Any Federal Government 
     employee may be detailed to the Commission without 
     reimbursement, and such detail shall be without interruption 
     or loss of civil service status or privilege.
       (3) Information from federal agencies.--The Commission may 
     secure directly from any Federal department or agency such 
     information as the Commission considers necessary to carry 
     out the provisions of this section. Upon request of the 
     Commission, the head of such department or agency shall 
     furnish such information to the Commission.
       (4) Hearings.--The Commission may hold such hearings, sit 
     and act at such times and places, take such testimony, and 
     receive such evidence as the Commission considers advisable 
     to carry out the objectives of this section, except that, to 
     the extent possible, the Commission shall use existing data 
     and research.
       (5) Postal services.--The Commission may use the United 
     States mails in the same manner and under the same conditions 
     as other departments and agencies of the Federal Government.
       (e) Report.--Not later than 1 year after all of the members 
     are appointed to the Commission under subsection (c)(1), the 
     Commission shall submit to Congress a report that summarizes 
     the findings of the Commission and makes such recommendations 
     for legislation as are consistent with this Act.
       (f) Authorization of Appropriations.--There are authorized 
     to be appropriated to the Equal Employment Opportunity 
     Commission such sums as may be necessary to carry out this 
     section.

     SEC. 209. CONSTRUCTION.

       Nothing in this title shall be construed to--
       (1) limit the rights or protections of an individual under 
     the Americans with Disabilities Act of 1990 (42 U.S.C. 12101 
     et seq.), including coverage afforded to individuals under 
     section 102 of such Act (42 U.S.C. 12112), or under the 
     Rehabilitation Act of 1973 (29 U.S.C. 701 et seq.);
       (2)(A) limit the rights or protections of an individual to 
     bring an action under this title against an employer, 
     employment agency, labor organization, or joint labor-
     management committee for a violation of this title; or
       (B) establish a violation under this title for an employer, 
     employment agency, labor organization, or joint labor-
     management committee of a provision of the amendments made by 
     title I;
       (3) limit the rights or protections of an individual under 
     any other Federal or State statute that provides equal or 
     greater protection to an individual than the rights or 
     protections provided for under this title;
       (4) apply to the Armed Forces Repository of Specimen 
     Samples for the Identification of Remains;
       (5) limit or expand the protections, rights, or obligations 
     of employees or employers under applicable workers' 
     compensation laws;

[[Page 2506]]

       (6) limit the authority of a Federal department or agency 
     to conduct or sponsor occupational or other health research 
     that is conducted in compliance with the regulations 
     contained in part 46 of title 45, Code of Federal Regulations 
     (or any corresponding or similar regulation or rule); and
       (7) limit the statutory or regulatory authority of the 
     Occupational Safety and Health Administration or the Mine 
     Safety and Health Administration to promulgate or enforce 
     workplace safety and health laws and regulations.

     SEC. 210. MEDICAL INFORMATION THAT IS NOT GENETIC 
                   INFORMATION.

       An employer, employment agency, labor organization, or 
     joint labor-management committee shall not be considered to 
     be in violation of this title based on the use, acquisition, 
     or disclosure of medical information that is not genetic 
     information about a manifested disease, disorder, or 
     pathological condition of an employee or member, including a 
     manifested disease, disorder, or pathological condition that 
     has or may have a genetic basis.

     SEC. 211. REGULATIONS.

       Not later than 1 year after the date of enactment of this 
     title, the Commission shall issue final regulations in an 
     accessible format to carry out this title.

     SEC. 212. AUTHORIZATION OF APPROPRIATIONS.

       There are authorized to be appropriated such sums as may be 
     necessary to carry out this title (except for section 208).

     SEC. 213. EFFECTIVE DATE.

       This title takes effect on the date that is 18 months after 
     the date of enactment of this Act.
                   TITLE III--MISCELLANEOUS PROVISION

     SEC. 301. SEVERABILITY.

       If any provision of this Act, an amendment made by this 
     Act, or the application of such provision or amendment to any 
     person or circumstance is held to be unconstitutional, the 
     remainder of this Act, the amendments made by this Act, and 
     the application of such provisions to any person or 
     circumstance shall not be affected thereby.

  The PRESIDING OFFICER. The Senator from Wyoming.
  Mr. ENZI. Mr. President, this is a bill that has been about 5 years 
in the works. It was introduced by Senator Snowe, who was joined by 
Senators Frist, Gregg, Kennedy, myself, and others. It has been 
introduced a number of times, but in 2003 this bill was passed by a 
vote of 95 to nothing. The only difference between that bill and the 
one before you today is deletion of a provision that makes conforming 
changes to the Internal Revenue Code to ensure that a small number of 
health insurance plans, known as church plans, do not discriminate on 
the basis of genetic information.
  We are removing the church plan provision because at the last minute 
yesterday a concern was raised that the language caused what is called 
a blue slip problem, which relates to the constitutional requirement 
that revenue measures originate in the House. There is considerable 
disagreement as to whether the church plan provision has a revenue 
impact and whether there is, in fact, a blue slip problem. In my 
opinion, there is no jurisdictional or constitutional problem with this 
simple conforming amendment.
  The Health, Education, Labor, and Pensions Committee in the Senate 
took great pains to draft the bill within its own jurisdiction and was 
disappointed that these concerns were raised at this late date. In the 
interest of moving this bill and creating the important protections 
that it guarantees, we are removing the questioned language.
  It is my understanding and hope that the House of Representatives 
will address the question of church plans when it takes up genetic 
information nondiscrimination legislation. Certainly no one believes 
that health insurance plans run by churches and other religious 
organizations should discriminate against individuals on the basis of 
genetic information. I am confident that when Congress has worked its 
will and delivered a genetic information bill to President Bush, which 
he requested, church plans will be treated the same as employer group 
health plans and individual health plans.
  I am pleased that this bill is finally here for debate and we will be 
able to take it through the process. Again, it is an important step 
toward eliminating discrimination based on genetic information in both 
health insurance and employment decisions.
  This bill was reported unanimously last week by the Health, 
Education, Labor, and Pensions Committee. It is identical to S. 2283 in 
the last Congress, which passed 95 to nothing with strong 
administration support. The purpose of this legislation is to protect 
individuals from discrimination in health insurance and employment on 
the basis of genetic information. It would accomplish this by 
preventing health insurers and employers from taking any action that 
would affect an employee's health or employment benefits based on 
genetic information an employer might discover.
  Establishing these protections will allay concerns about the 
potential for discrimination, and it will encourage individuals to 
participate in genetic research and to take advantage of genetic 
testing, new technologies, and new therapies. The legislation will 
provide substantial protections to those individuals who may suffer 
from actual genetic discrimination now, or may have some reason to be 
concerned about it in the future. These steps are essential to 
fulfilling the tremendous promise of genetic research and science.
  The science of genetic technology has seen an explosion of progress 
in the past few years.
  Just 2 years ago, for example, scientists at the National Institutes 
of Health and elsewhere finally completed assembly of the human genome. 
What had seemed impossible for so long came to pass. Suddenly, with 
great fanfare and the attention of the international scientific 
community, the announcement was made. The human genetic code had been 
broken.
  Among other effects, the work of the Human Genome Project and sister 
efforts elsewhere has accelerated the ability of scientists to discover 
genetic ``markers'' for many serious and significant diseases that we 
may be able to avoid with the proper care and preventive treatment.
  Unfortunately, great change such as this sometimes carries with it 
not only great promise, but also a potential for misuse. That occurs 
when what should be an exciting breakthrough becomes at the same time a 
source of fear. For example, some individuals who should have welcomed 
the new ability to test for markers of inherited diseases instead 
encountered fear that such information might also be used to deny them 
insurance coverage or employment security.
  Ironically, for some, what could have been a life-saving tool became 
instead a means to harm the very people it was designed to protect. For 
too many, it was simply better not to know. Allow me to recount just a 
few real-life examples, drawn from testimony before NIH panels 
investigating this issue:
  One woman, who suffers from a rare liver disorder, found that both 
she and her children were rejected by a major insurance company, even 
though both children were only passive carriers of the disease and 
would never suffer from it. Only after a news organization contacted 
the insurer was the denial reversed.
  In another example, a woman with a family history of breast cancer 
found that she, too, carried the genetic marker for that disease--and 
as a result chose to have a precautionary mastectomy and hysterectomy. 
After that, her employer received a $13,000 annual increase in his 
small company's health insurance bill.
  As a result, this woman's employer asked her to switch to her 
husband's insurance and told her that if she did so she would get a 
raise. Fearing that a switch in coverage would jeopardize her ability 
to be covered at all, she refused. The employer then raised the premium 
amounts charged to all his employees.
  These accounts, and others like them, make the point very strongly 
for the need for us to act. Simply put, we need to act now to save 
lives.
  We have before us today an important bill that will address the fault 
in the system and correct it. It was carefully crafted to alleviate the 
problems faced by people like those I have mentioned. It was designed 
to calm the fears of those who are hesitant to subject themselves to 
genetic tests, knowing that what safeguards are in place may prove to 
be inadequate. It is a bill to restore their confidence in the system 
and their faith that the process is fair.
  Only if we pass this legislation now will we truly be able to 
encourage the

[[Page 2507]]

scientific progress in this field. The science of genetics may well 
hold our best hope for combating many of our worst afflictions. 
However, genetics, like the rest of science, will progress best when 
ideas and information are freely exchanged.
  As a former small businessman, I am sensitive to the concerns raised 
by some in the business community that this legislation might impose 
new liabilities on employers. I am confident, however, that after they 
become familiar with the provisions of this bill, such critics will see 
that it has been carefully written such that its enactment will reduce 
the risk that an employer will ever be dragged into court to face a 
claim of genetic discrimination.
  It will not do this by letting employers and insurers off the hook. 
Far from it. Rather, what this bill will do is reduce litigation 
because its rules are clear, the exceptions are responsible, and the 
procedure is fair.
  Simply put, neither will employees become victims of discrimination 
nor will employers be sued unreasonably. Why? Because this bill sets a 
standard for conduct that is easy to understand and easy to follow. We 
are far better off setting the rules of the road clearly and ``up 
front,'' rather than allowing them to be set piecemeal through 
litigation.
  We also must act now to ensure legal uniformity and consistency 
nationwide. About half the States today have laws governing genetic 
information. However, these laws differ significantly from one another 
and do not always fully address the problem.
  Once this legislation is signed into law we will have a clear, 
concise and uniform policy on genetic information that will make clear 
what is and is not an acceptable use for genetic information.
  Over the course of the last Congress, I had the pleasure of working 
on this legislation with colleagues on both sides of the aisle. I thank 
the majority leader and Senators Snowe, Gregg, Kennedy, Jeffords, and 
others for their good efforts to reach a bipartisan agreement on this 
bill. It will make a difference in more lives than we will ever know.
  If we pass this legislation, and pass it we must, we will have taken 
a great step forward and ensured that the initial breakthroughs of Dr. 
Watson and Dr. Crick, and the more recent ones by the National Genome 
Project, will continue to reap benefits for generations to come.
  We will finally have a uniform policy in place to ensure that 
information retrieved from genetic testing will remain confidential and 
off limits to those who would be tempted to use it to discriminate.
  As genetic technology continues to develop in the years to come, the 
beneficial impact on the public health and our individual lifestyles 
promises to be enormous. Enactment of the bill before us today will 
help America secure the realization of that promise.
  I yield the floor and reserve the remainder of my time.
  The PRESIDING OFFICER. The Senator from Massachusetts.
  Mr. KENNEDY. Mr. President, I yield myself 10 minutes.
  The PRESIDING OFFICER. The Senator is recognized.
  Mr. KENNEDY. Mr. President, first I commend my friend and chairman of 
the Health, Education, Labor, and Pensions Committee, Senator Enzi, for 
his leadership in reporting out this legislation. As he has outlined, 
and as I will speak to in a moment, it is a matter of enormous 
importance to millions of Americans. He has outlined the reasons for 
that.
  When we think back to the time Senator Snowe and others introduced 
this legislation a number of years ago, there was a great deal of 
apprehension, a great deal of concern, and a good deal of opposition to 
this over that period of time. Due to a good deal of very hard, 
diligent work by the chairman here, by our staffs, and by many others 
on our committees, especially Senator Jeffords and Senator Gregg, 
Senator Dodd, Senator Harkin, Senator Clinton, as well as Senator 
Olympia Snowe, we are about to successfully pass this legislation in a 
very strong bipartisan way, and they deserve great commendation at this 
time. I hope that with very strong bipartisan support it will send a 
good message to the House of Representatives that it is worthy to be 
done, necessary to be done, and has the great and overwhelming support 
of the American people. I hope we will see action.
  I also thank the majority leader for scheduling this bill and giving 
it priority. As all of us know, Bill Frist, a physician, knows the 
extraordinary potential of genetic research and its importance in 
improving the quality of medical care and in preventing, treating, and 
curing disease. I want to express our great appreciation to him for 
giving us the opportunity to speak this afternoon, with the completion 
of this bill either this evening or tomorrow. We thank him as well.
  Throughout our history, the Nation has moved toward a more fair and 
more just society, often with great difficulty. Along the way, we had 
setbacks, even some failures. But we have had significant triumphs, 
too, especially in this past half century.
  In 1964 the Congress enacted the Civil Rights Act to end one of the 
great evils of our time, discrimination against millions of our fellow 
citizens based on their race, color, religion, sex, or national origin. 
In 1965 we passed the Voting Rights Act to end discrimination in the 
right to vote.
  In 1967, we passed another important law prohibiting age 
discrimination in employment.
  In 1990, we passed the Americans with Disabilities Act to end 
discrimination against citizens with mental or physical handicaps.
  In 1991, we strengthened the vital protections against job 
discrimination established in the 1964 Act.
  Today we take another step in our national journey to a fairer and 
more just America by approving important legislation to end another 
insidious form of bias--discrimination based on the most personal 
aspect of any individuals, their unique genetic code.
  Four years ago, we celebrated an accomplishment that once seemed 
unimaginable--deciphering the entire sequence of the human DNA code. 
This amazing accomplishment may well affect the 21st century as 
profoundly as the invention of the computer or the splitting of the 
atom affected the 20th century.
  I personally believe this is the century of the life sciences with 
the greatest kind of hope and opportunity for progress in the life 
science area.
  To cite but one example of why this legislation is so important, it 
was this new knowledge that enabled scientists to decipher the DNA 
sequence of the SARS virus only weeks after it was first identified.
  The extraordinary promise of science to improve health and relieve 
suffering is in jeopardy, however, if our laws fail to provide adequate 
protections against abuse and misuse of genetic information.
  The bipartisan bill the Senate considers today prohibits health 
insurers from using genetic information to deny health coverage or 
raise premiums.
  It bars employers from using genetic information to make employment 
decisions. It prohibits insurers and employers from seeking genetic 
information, or requesting or requiring individuals to take genetic 
tests. It bars disclosure of genetic information by an insurer or 
employer, and provides effective remedies so that anyone who has 
suffered genetic discrimination can obtain relief.
  Congress took an initial step in the right direction when we passed 
the Health Insurance Portability and Accountability Act. That landmark 
law established important protections to ensure that those who change 
their job or lose their job would not also lose their health insurance. 
It included also a prohibition on genetic discrimination in group 
health insurance.
  The pending bill extends that prohibition to many other types of 
genetic discrimination, and I commend our colleague from Maine, Senator 
Snowe, has been a principal leader on this vital issue for many years.
  I also commend our distinguished chairman of the HELP Committee, 
Senator Enzi, for his impressive commitment to enacting this needed 
legislation by making it one of the very

[[Page 2508]]

first items for committee action under his leadership. Other members of 
our committee have given time, energy and ideas to this important 
issue, especially Senator Jeffords, Senator Gregg, Senator Dodd, and 
Senator Harkin.
  Our majority leader deserves great credit as well. As a physician, he 
knows the extraordinary potential of genetic research to improve the 
quality of medical care and prevent, treat, and cure disease. 
Hopefully, the bipartisan momentum will lead to an enactment of 
legislation this year.
  Few kinds of information are more personal or more private than a 
person's genetic makeup. This information should not be shared by 
insurers or employers, or be used in decisions about health coverage or 
a job. It should only be used by patients and their doctors to make the 
best possible decisions on diagnosis and treatment.
  I hope we can all agree that discrimination on the basis of a 
person's genetic traits is as unacceptable as discrimination on the 
basis of race or religion. No American should be denied health 
insurance or fired from a job because of a genetic test.
  Last fall, witnesses on a panel of the National Institutes of Health 
testified about their first hand accounts of genetic discrimination. 
Even though they will never develop the disease, Heidi Williams' 
children were denied health insurance coverage because they are 
carriers for a genetic disorder. Phil Hardt's children feared 
discrimination so much that they sought genetic tests in secret, paying 
out of their own pockets and not using their real names.
  During hearings in the House, Gary Avary told how his employer, the 
Burlington Northern Santa Fe Railroad, required any employee with 
carpal tunnel syndrome to have a genetic test. Employees who refused 
were threatened with penalties, or even the loss of their jobs.
  Terri Seargent was discharged from her job at a private firm in North 
Carolina in 1999, 2 months after beginning very expensive treatment for 
a disease that was covered by her employer's health insurance plan. 
Since joining her employer in 1996, she had received positive annual 
performance ratings and generous annual raises. Yet she lost her job 
soon after the special treatment began.
  Fear of genetic discrimination also prevents people from having 
genetic tests for hereditary cancer, which would provide them with 
life-saving information to help them prevent the onset of cancer or 
increase the likelihood of early diagnosis. In a recent study, only 57 
percent of women decided to undergo testing for mutations in the breast 
cancer genes and only 43 percent of those at risk for colon cancer 
chose to have genetic testing. People fear cancer, but many also fear 
losing their jobs or their health insurance even more.
  Experts in genetics are united in calling for strong protections to 
prevent this misuse and abuse of science.
  The HHS advisory panel on genetic testing--with experts in law, 
science, medicine and business--has recommended unambiguously that 
federal legislation is needed to prohibit discrimination in employment 
or health insurance based on genetic information.
  Francis Collins, the leader of the NIH project to sequence the human 
genome, said:

     Genetic information and genetic technology can be used in 
     ways that are fundamentally unjust . . . Already, people have 
     lost their jobs, lost their health insurance, and lost their 
     economic well-being because of the misuse of genetic 
     information.

  Genetic tests are becoming even cheaper today and more widely 
available. If we don't ban discrimination now, it may soon be routine 
for employers to use genetic tests to deny jobs to employees, based on 
their risk for disease.
  When Congress enacts clear protections against genetic discrimination 
in employment and health insurance, all Americans will be able to enjoy 
the benefits of genetic research, free from the fear that their 
personal genetic information will be used against them.
  If Congress fails to guarantee that genetic information is used only 
for legitimate purposes, we will squander the vast potential of genetic 
research to improve the nation's health.
  Effective enforcement of the ban will also be essential. It makes no 
sense to enact legislation giving the American people the promise of 
protection against this form of discrimination, and then deny them the 
reality of that protection.
  President Bush recognizes the seriousness of this problem, and 
supports a ban on genetic discrimination. As he said on June 26, 2001, 
``genetic information should be an opportunity to prevent and treat 
disease, not an excuse for discrimination. Just as our nation addressed 
discrimination based on race, we must now prevent discrimination based 
on genetic information.''
  I commend the President for his support, and I look forward to 
working with the administration to see that a strong bill on genetic 
discrimination is signed into law this year.
  It is time for Congress to act, and I urge the Senate to pass this 
bipartisan bill with the broadest possible support.
  I ask unanimous consent to have printed in the Record the strong 
statement of the American Academy of Pediatrics. They are concerned 
that discrimination will deny families access to health insurance for 
their children.
  There being no objection, the material was ordered to be printed in 
the Record, as follows:

                               American Academy of Pediatrics,

                         Elk Grove Village, IL, February 14, 2005.
     Hon. Edward Kennedy,
      Ranking Member, Committee on Health, Education, Labor and 
         Pensions, Washington, DC.
       Dear Senator Kennedy: The American Academy of Pediatrics, 
     an organization of 60,000 primary care pediatricians, 
     pediatric medical subspecialists and pediatric surgical 
     specialists dedicated to the health and well being of all 
     infants, children, adolescents, and young adults, would like 
     to express its strong support for S. 306, the Genetic 
     Information Nondiscrimination Act.
       The American Academy of Pediatrics strongly supports 
     efforts to enhance, improve and expand the ability to provide 
     newborn screening, counseling and health care services. 
     Advances in genetic research promise great strides in the 
     diagnosis and treatment of many childhood diseases, detected 
     as early as the newborn period or later in childhood. With 
     early identification and timely intervention, we have the 
     ability to significantly reduce morbidity, mortality and 
     associated disabilities in infants and children affected with 
     certain genetic, metabolic and infectious conditions.
       With these opportunities, however, we also have a 
     responsibility to ensure that careful consideration is given 
     to the testing and screening of children so that emerging 
     technologies are used in ways that promote the best interest 
     of patients and their families. Potential benefits of genetic 
     screening and testing are limited by the risks of harm that 
     may be done by gaining certain genetic information, including 
     potential for discrimination by insurers and employers. 
     Furthermore, the American Academy of Pediatrics is concerned 
     that genetic discrimination is a barrier for families to 
     access health insurance for their children. More than 9 
     million children are currently uninsured in this country, and 
     millions more are underinsured. We will never achieve our 
     goal of ensuring that every child has health insurance 
     coverage if genetic discrimination is permitted.
       For these reasons, the American Academy of Pediatrics 
     supports passage of S. 306, which would protect children and 
     families from genetic discrimination in health insurance and 
     employment. The American Academy of Pediatrics commends you 
     for your timely action on this legislation, and looks forward 
     to working with you toward its passage into law.
           Sincerely,
                                                  Carol Berkowitz,
                                                        President.

  Mr. KENNEDY. Mr. President, the American Cancer Society supports our 
legislation. The American Osteopathic Association says access to health 
care should not be restricted on the basis of genetic testing. The 
American Society for Human Genetics; the biotechnology industry--all 
have made very important statements in support of this legislation, 
along with other organizations.
  We suggest, for those who are following this debate, to refer to a 
July 2004 report titled ``Faces of Genetic Discrimination'' from the 
Coalition for Genetic Fairness. This is a wonderful document that I 
think has so much information. It lists the wide range of groups 
supporting this legislation, including the American Academy of 
Pediatrics, the American Cancer Society,

[[Page 2509]]

the American Medical Association, the American Osteopathic Association, 
the American Society for Human Genetics, the Biotechnology Industry 
Organization, Hadassah, the Juvenile Diabetes Research Foundation, the 
National Organizations of Rare Disorders, the National Workrights 
Institute, and the Society for Women's Health Research. It is a 
wonderful document that outlines the history and the opportunity of 
genetic research and technology.
  Mr. ENZI. I yield 10 minutes to the Senator from Maine, Ms. Snowe.
  The PRESIDING OFFICER. The Senator from Maine.
  Ms. SNOWE. Mr. President, I thank, first and foremost, the chairman 
of the Health, Education, Labor, and Pensions Committee, the HELP 
Committee, Senator Enzi, for his commitment and for moving this 
legislation out of the committee as the first of a group of health-
related bills to be referred out of his committee as the new leader, 
the chair of this committee this year. I thank the chairman for doing 
so and I express my gratitude to him. This sends a very significant 
message to the House of Representatives of the importance and the value 
of this initiative. Senator Enzi not only as chair of this committee 
but previously was instrumental for participating in negotiations for 
more than 16 months to help fashion a consensus on the legislation now 
before the Senate and that was enacted through his committee, as well. 
I thank him for his leadership that made it possible to bring this 
legislation to the Senate.
  I also express my appreciation to my colleague on the other side of 
the aisle, Senator Kennedy, as ranking member of the HELP Committee, 
who has been a longtime champion of protection for an individual's 
private health information, dedicating himself over the past year and a 
half toward forging a bipartisan solution to this issue.
  Also, as a result of the considerable yeoman efforts of the Senate 
majority leader, a major breakthrough occurred on this legislative 
initiative. The Senate majority leader agreed to the necessity of this 
legislation the last few years in making it possible. It was due in 
large measure to his stalwart efforts in working with me and others 
such as Senator Enzi and Senator Kennedy, and Senator Jeffords, who has 
been a collaborator on this issue for 8 years, which made it possible 
to forge this bipartisan effort. I thank the Senate majority leader 
because he, obviously, was pivotal in ensuring we could pave the way 
for the passage of this legislation as we did last fall in October with 
unanimous support. Hopefully, we will receive the same support for this 
initiative today, as well. I thank the leader for giving his support 
and vital efforts to making this possible. I thank him for his vision 
and tireless support.
  Also, I thank Senator Gregg who last year dedicated significant time 
and staff resources when he was the previous chair of the committee and 
for helping to make it a priority of his committee last year when he 
chaired the HELP Committee.
  Also, Senator Dodd has been deeply committed to fighting to ensure 
that consumers have the strongest possible protections afforded to them 
with the passage of this legislation.
  Since April of 1996 when I first introduced the Genetic Information 
Nondiscrimination Health Insurance Act, along with my colleague, 
Senator Jeffords, science has continued to hurtle forward, further 
opening the door to early detection and medical intervention through 
the discovery and identification of specific genes linked to diseases 
such as breast cancer, Huntington's disease, glaucoma, colon cancer, 
and cystic fibrosis.
  We recognized in 1996 with progress in the field of genetics 
accelerating at a breathtaking pace that we must ensure the fast 
arriving scientific advances in treatment and prevention of diseases do 
not advance a new basis for discrimination. As with countless 
scientific breakthroughs in history, the eventual completion of the 
genome project not only brought the prospects of medical advances such 
as improved detection and earlier intervention but also the potential 
for harm and abuse.
  Every day since that breakthrough, the American people have been 
vulnerable to this type of discrimination. The everyday risk of 
discrimination has inhibited the full use of this vast, still untapped 
reservoir of knowledge.
  As I have said previously, the fear of repercussions from one's 
genetic makeup was brought home to me through the real-life experience 
of one of my constituents, Bonnie Lee Tucker. In 1997, Bonnie Lee wrote 
to me and told me she was too afraid to have the BRCA test for breast 
cancer, even though nine women in her immediate family were diagnosed 
with breast cancer and she herself was a survivor. She was worried that 
knowledge might damage her daughter's ability to obtain insurance in 
the future.
  Bonnie Lee was not alone in her fear. When the National Institutes of 
Health offered women genetic testing, nearly 32 percent of those who 
were offered a test for breast cancer risk declined to take it, citing 
concerns about health insurance discrimination.
  What value is scientific progress if it cannot be applied to those 
who would most benefit?
  I recall the testimony before Congress of Dr. Francis Collins, the 
Director of the National Human Genome Research Institute, without whom 
we would not have reached this day. In speaking of the next step for 
those involved in the genome project, he explained the project 
scientists were engaged in a major endeavor to ``uncover the 
connections between particular genes and particular diseases,'' to 
apply the knowledge they just unlocked. In order to accomplish this, he 
said:

       We need a vigorous research enterprise with the involvement 
     of large numbers of individuals, so that we can draw more 
     precise connections between a particular spelling of a gene 
     and a particular outcome.

  With all this tremendous potential, this effort cannot reach its full 
promise if patients have a reason to feel repercussions of genetic test 
results. Given the advances in science, there are two distinct concerns 
at hand. The first, of course, is discrimination by health insurance. 
The second is employment discrimination based simply upon an 
individual's genetic information. This legislation addresses both of 
these issues based on the firm foundation of current law.
  With regard to health insurance, these are clear and familiar issues 
which the Senate has previously debated in the context of larger 
patient privacy issues. Indeed, as Congress considered what now is 
known as the Health Insurance Portability and Accountability Act of 
1996, we also addressed medical information privacy. Moreover, any 
legislation that seeks to fully address these issues must consider the 
interaction of the new protections with the privacy rule which was 
mandated by HIPAA and our legislation which accomplishes just that.
  Specifically, we clarify the protections of genetic information as 
well as the request to receive a genetic test from being used by the 
insurer against the patient. The fact is, genetic information only 
detects the potential for genetically linked disease or disorder. And 
potential does not equal a diagnosis of disease.
  It is critical this information be available to health care 
professionals to diagnosis or treat an illness. Without the protection 
which this bill offers, patients will not be able to take advantage of 
our ever-increasing knowledge of genetics.
  On the subject of employment discrimination, unlike our legislative 
history in debating health privacy matters, the issue surrounding 
protecting genetic information from workplace discrimination is not as 
extensive.
  To that end, our bipartisan bill institutes these protections in the 
workplace. There should be no question of this necessity. Indeed, it is 
an imperative. The threat of employment discrimination is not 
hypothetical, and therefore it is essential that we take this 
information off the table, so to speak, before such abuse becomes 
widespread. While Congress has not yet debated this specific type of 
employment discrimination, we have considerable case law and 
legislative history on which to build.
  Indeed, as we considered the necessity for this type of protection, 
we

[[Page 2510]]

agreed that we must extend current discrimination protections to 
genetic information. We reviewed current employment discrimination law 
and possible remedies for instances of genetic discrimination and 
whether they should differ from existing remedies under current law, 
such as the American Disabilities Act or the EEOC. This bill creates 
new protections by paralleling current law and clarifying the remedies 
available to victims of discrimination. So regardless of their 
religion, race, or DNA, people will all receive the same protections 
under the law. There will be an across-the-board Federal standard which 
becomes so critical to fundamental protections under the law.
  It has been more than 4 years since the completion of the working 
draft of the human genome. Like a book that sits unopened, the wonders 
of the human genome are useless if it is compromised by the fear of 
discrimination. This legislation is a shining example of what can be 
accomplished when we set aside partisan differences in order to address 
the challenges facing the American people.
  I urge my colleagues to support this legislation. Again, I thank the 
chair of the committee for his instrumental and pivotal leadership to 
bring this legislation to the floor.
  Mr. President, I yield the floor.
  The PRESIDING OFFICER. The Senator's time has expired.
  The Senator from Wyoming.
  Mr. ENZI. Mr. President, I thank the Senator from Maine for her 
persistence, her enthusiasm, her perseverance, and particularly her 
reasonableness in dealing with this issue, recognizing how important it 
is and how important it is to get it done now.
  I say to the Senator, you have just done tremendous work at pulling 
everybody together. I recognize that effort. Without your efforts, this 
would not have been possible. So I thank you for bringing it to this 
point.
  I yield the floor.
  The PRESIDING OFFICER. The Senator from Massachusetts.
  Mr. KENNEDY. Mr. President, I yield myself 4 minutes.
  I had mentioned earlier the great leadership that the Senator from 
Maine has been providing. She has been a noble soul since the very cold 
winter when she first introduced this legislation. Now she deserves 
great credit that we are at point.
  Just on that point, I wish to recognize Representative Slaughter in 
the House of Representatives. She has been a great advocate over a long 
period of time. I want the Senate record to reflect that.
  I also want the record to reflect the fact that President Clinton 
issued an Executive order banning genetic discrimination against 
Federal employees in the year 2000. It was limited, obviously, with his 
authority and power, to just Federal employees but, nonetheless, it was 
a significant step at that time.
  I also draw attention to the strong support President Bush has given 
to this undertaking. In a radio broadcast, actually in 2001, he stated:

       Genetic discrimination is unfair to workers and their 
     families.

  In that same radio broadcast he also stated:

       To deny employment or insurance to a healthy person based 
     only on predisposition violates our country's belief in equal 
     treatment and individual merit.

  We also have the strong letter of support from the Secretary of HHS, 
Tommy Thompson, from last year. There is also the statement from the 
administration, this year, in support.
  I just mention one final point. Out at the National Institutes of 
Health, where they really do the best of the research--it is really the 
gold standard of research--they have important genetic research out 
there. In their information sheet, they have what we call the consent 
form. This is the consent form that any individual who wants to 
participate in genetic research at NIH signs. It says:

       We will not release any information about you or your 
     family to your insurance company or employer without your 
     permission. However, instances are known in which genetic 
     information has been obtained through legal means by third 
     parties. This may affect you or your family's ability to get 
     health insurance and/or a job.

  Here is the premier workplace in the world doing the most 
significant, important research in genetics, which is so incredibly 
important, just raising this as a very real potential danger. It will 
not be a danger when we get this legislation passed into law.
  Finally, I also commend my friend, and our former leader, Senator 
Daschle, who had introduced important legislation in 1997 on this very 
subject matter. He was one of the early leaders in this battle.
  Mr. President, I think we have speakers who are on their way. I 
suggest the absence of a quorum.
  The PRESIDING OFFICER. The clerk will call the roll.
  The assistant legislative clerk proceeded to call the roll.
  Mr. ENZI. Madam President, I ask unanimous consent that the order for 
the quorum call be rescinded.
  The PRESIDING OFFICER (Ms. Snowe). Without objection, it is so 
ordered.
  Mr. ENZI. Madam President, I yield 3 minutes for purposes of a 
colloquy with my friend, the Senator from Oklahoma.
  The PRESIDING OFFICER. The Senator from Oklahoma.
  Mr. COBURN. Madam President, I thank Senator Enzi and all those who 
have worked hard on this bill. I have a few questions in terms of my 
concern about prenatal testing.
  Do I understand from the remarks of the Senator from Wyoming that 
this legislation is directed against a wide range of cases with which 
individuals of families may be discriminated against in health 
insurance coverage based on the results of genetic tests conducted on 
any family member?
  Mr. ENZI. Yes, that is correct.
  Mr. COBURN. One example of such discrimination cited in the past is 
based on prenatal testing. A 1996 report by the National Academy of 
Sciences cited a case in which a California HMO threatened to deny 
health care coverage to a child because that child, before being born, 
antenatal, tested positive for a genetic defect associated with cystic 
fibrosis. Would this legislation protect against this type of 
discrimination?
  Mr. ENZI. Madam President, yes. In the type of situation described, 
the legislation would prohibit the insurer from discriminating against 
both the mother and the child because of the result of the genetic test 
of the child. It is the intent of the legislation to prohibit insurers 
from denying coverage to either a child or the child's family members 
based on the results of prenatal testing.
  Mr. COBURN. I thank the Senator. Based on that interpretation and my 
understanding that the Senator will ensure the conference report 
includes language that makes clear that a dependent child will be 
protected from discrimination under this legislation regardless of when 
the genetic information was acquired, including any information gained 
from ante- and prenatal testing, I will support the bill. I 
congratulate Senator Enzi and thank him for his hard work and for the 
colloquy.
  Mr. ENZI. Madam President, I thank the Senator from Oklahoma for his 
careful concern and the depth with which he has been into the bill and 
the vast knowledge he has as a doctor which helps to get all those 
different perspectives that bring bills together. We thank him for his 
efforts.
  I yield myself 6 minutes.
  Answering the question of ``why do this bill now'' is very important. 
The most persistent question from the business community about this 
bill, and the most reasonable, is why now? Why should we create a new 
basis for lawsuits for a subject area where there is no record of 
abuse, on information that employers do not want or need, to prevent 
fear over hypothetical situations? Let me address this critical 
question head on because I asked it myself at the onset, and I have 
answered it to my satisfaction.
  First, we are not legislating in the area of the unknown but in the 
area of hope. Genetic information holds the key to better diagnosis, 
better cures, better lives for all of the world's population. We have 
determined that a serious impediment to this progress is fear,

[[Page 2511]]

fear that the information derived from the genetic tests will be used 
to harm the individual, fear that the usage of the information is 
creating reluctance and that it is leading to refusal to take tests. 
Every refused test is progress delayed for all mankind because it is 
only through testing that scientists will amass the knowledge to find 
the diagnostic tools and cures we so desperately desire. Considering 
the potential for discovery and the employer protections we have built 
into this legislation, I am confident we have struck the right balance. 
But the question remains, why now? Why not wait for greater proof of 
fear and abuse?
  There are several reasons. For well over half the States, it is not 
too early to take action. We are seeing developed a hodgepodge of State 
laws that address the handling of genetic information and the banning 
of its use in the workplace and in insurance. There are patterns to 
these laws, but there are enormous inconsistencies. Likewise, Federal 
law is inconsistent. The Americans with Disabilities Act covers genetic 
matters if they are ``regarded as'' a disability, but the determination 
is subjective and likely to evolve on a case-by-case basis. The Civil 
Rights Acts of 1964, as amended in 1991, are also implicated.
  In short, many questions remain over what is and what is not covered 
by existing Federal and State law. And history has taught us that 
unanswered questions breed lawsuits. With this legislation, we seek to 
answer questions and prevent litigation. We have the opportunity to 
write a clearly defined set of rules for the collection and 
preservation of genetic information and carefully proscribe its usage. 
That will prevent mistakes and abuse. Before anyone develops the desire 
or reason to harm our fellow citizens, a clear-cut set of rules 
established at the infancy of this amazing field of science will do 
greater good for businesses and insurers and the public than waiting 
for common law to develop.
  I remind my colleagues and my friends in the private sector that 
lawyers are already looking for opportunities to sue for genetic 
discrimination under State laws, under the Americans With Disabilities 
Act, and under many other laws written for other purposes--hoping to 
cash in on this developing area of the law. This is one area where it 
is not appropriate to let nature take its course. I am not willing to 
abdicate this policymaking function and wait for the courts to decide 
on how laws should apply to a field of science that didn't exist when 
the laws we are talking about were written. That is the job of 
Congress.
  It is also important to observe that there are few victims as of yet 
in this field of science and law, and that is a good thing. We want to 
keep it that way. The rules established in the Genetic Information 
Nondiscrimination Act are clear and fair. We distinguish between the 
legitimate and illegitimate use of genetic information in the 
workplace. We ensure confidentiality and make it clear how employers 
are to do that. And from my perspective, most importantly, we have 
included every essential safeguard and exception to prevent this law 
from becoming a litigation nightmare for businesses.
  In conclusion, let me state that it is no coincidence that the first 
major civil rights bill of this new Congress deals with a truly 21st 
century issue. While genetic discrimination may not be widespread at 
this time, this legislation ensures that discriminatory practices will 
never become common practice.
  From the past, we have learned from employees, employers, insurers, 
and others all work best together when the rules are clear and 
opportunities for personal achievement and health are available. This 
legislation tells everyone what is expected of them and avoids the trip 
wires and uncertainty of some of our existing laws.
  I reserve the remainder of my time. I suggest the absence of a quorum 
and ask unanimous consent that the time be equally divided.
  The PRESIDING OFFICER (Mr. Coburn). Without objection, it is so 
ordered.
  The clerk will call the roll.
  The assistant legislative clerk proceeded to call the roll.
  Mr. ENZI. Mr. President, I ask unanimous consent that the order for 
the quorum call be rescinded.
  The PRESIDING OFFICER. Without objection, it is so ordered.
  Mr. ENZI. Mr. President, I have here a copy of the Genetic 
Information Nondiscrimination Act 2003, which was submitted by Senator 
Gregg, who was chairman at that time. We did not do a new report this 
time. The reason we did not is because the bill has not changed between 
then and now.
  I strongly urge my colleagues to consult this report, Senate 
Committee Report 108-122, not only because of its excellent background 
and analysis, but also because it clearly illustrates much of the 
thinking and work behind why this bill was drafted as it was.
  Mr. President, I ask unanimous consent that a Statement of 
Administration Policy, issued today, regarding genetic information be 
printed in the Record. The administration favors enactment of the 
statement this legislation and this statement gives some explanation.
  There being no objection, the material was ordered to be printed in 
the Record, as follows:

         Executive Office of the President, Office of Management 
           and Budget,
                                Washington, DC, February 16, 2005.

    Statement of Administration Policy, S. 306--Genetic Information 
                     Nondiscrimination Act of 2005

       The administration favors enactment of legislation to 
     prohibit the improper use of genetic information in health 
     insurance and employment. The administration supports Senate 
     passage of S. 306 as reported, which would prohibit group 
     health plans and health insurers from denying coverage to a 
     healthy individual or charging that person higher premiums 
     based solely on a genetic predisposition to developing a 
     disease in the future. The legislation also would bar 
     employers from using individuals' genetic information when 
     making hiring, firing, job placement, or promotion decisions.
       The mapping of the human genome has led to more information 
     about diseases and a better understanding of our genetic 
     code. Scientists are pursuing new diagnostics, treatments, 
     and cures based on this information, but the potential misuse 
     of this information raises serious moral and legal issues. 
     Concern about unwarranted use of genetic information 
     threatens access to utilization of existing genetic tests as 
     well as the ability to conduct further research. The 
     administration wants to work with Congress to make genetic 
     discrimination illegal and provide individuals with fair, 
     reasonable protections against improper use of their genetic 
     information.

  Mr. ENZI. Mr. President, I yield the floor, reserve the remainder of 
the time, and suggest the absence of a quorum, and ask that the time be 
equally divided.
  The PRESIDING OFFICER. Without objection, it is so ordered. The clerk 
will call the roll.
  The assistant legislative clerk proceeded to call the roll.
  Mr. GREGG. Mr. President, I ask unanimous consent the order for the 
quorum call be rescinded.
  The PRESIDING OFFICER. Without objection, it is so ordered.
  Mr. GREGG. Mr. President, I ask unanimous consent I be allowed to 
speak for up to 10 minutes on the bill.
  The PRESIDING OFFICER. Without objection, it is so ordered.
  Mr. GREGG. Mr. President, first I rise to congratulate the Senator 
from Wyoming for assuming the chairmanship of the HELP Committee and 
moving forward on this exceptionally important piece of information, 
the Genetic Information Nondiscrimination Act of 2005. Quickly moving 
this legislation forward shows the priority the Senator from Wyoming 
places on straightening out our medical situation in this country, 
making delivery of health care more affordable, more thoughtful, and in 
this case free of discrimination.
  This is the first civil rights act, really, of this century, for all 
intents and purposes. It is a major commitment to people of our country 
that they will not be discriminated against on the basis of their 
genetic code. Last year we celebrated the discovery by Dr.

[[Page 2512]]

Watson and Dr. Crick of the double helix. Then we also celebrated the 
fact that NIH had mapped the human genome, that the DNA project was 
completed. Those were huge milestones which have had an exceptional 
impact on the quality of health care in this country. They will 
continue to have an expanding impact; the breadth and depth of 
influence on how we deliver health care and how people's health care is 
affected within our Nation cannot even be predicted. That is because, 
if you can define what your genetic code is, you can obviously make 
huge strides toward curing diseases which might potentially afflict 
anyone.
  But this new science also created issues for us, public policy 
issues. One of the big public policy issues it created is the issue of 
discrimination based on your genetic code. Everybody has this problem--
or has this benefit--or has this situation. We all have genes. This is 
a universal issue. It is something that impacts everyone.
  So Congress has taken a long and indepth look at how we should 
address this from a public health policy standpoint, working in a very 
bipartisan way under the leadership of Senator Enzi. Prior to that, I 
was chairman of this committee and we worked on this very aggressively 
with help across the aisle, of course, of Senator Kennedy and members 
of the Democratic leadership on the committee.
  Then, outside the committee itself, Senator Frist and Senator Snowe 
and others have played a major role in making sure that what we did in 
this area was thoughtful and had a purpose and accomplished the goal. 
The goal was to make sure that discrimination did not occur in the 
science of the human genome and that the science of the use of this 
information that genetics was going to produce could be best 
implemented so we didn't end up retarding the development and 
implementation of new cures. The goal was to address the concerns of 
people relative to their genetic history and the potential it has for 
them as they move forward in their lives so they are not impacted 
negatively by acts of discrimination which might chill people's 
willingness to use this genetic information or even obtain this genetic 
information in their interfacing with the health community.
  This act is an effort, after a tremendous amount of work, to 
thoughtfully and intelligently address the issue of how we effectively 
promote the use of genetic information. It actually encouraged people 
to take advantage of this new science rather than have an atmosphere 
where people are limited or are discouraged from taking advantage of 
this new science.
  We know, unfortunately, that the potential is there, and it has 
actually occurred. We have instances--a few, I admit, but there are 
specific instances--of discrimination occurring as a result of the 
person's genetic history or potential genetic history in the area of 
employment and in the area of health insurance. This is where this bill 
addresses those concerns.
  It specifically addresses the issue of health insurance underwriting, 
and it specifically addresses the issue of employment. Its impact is 
that health insurance plans will not be able to deny eligibility for an 
employee into a health plan based on genetic information, and it 
prohibits health insurance plans from charging higher premiums based on 
an individual's, or his or her family's, genetic information. It is 
very important.
  It also does not allow an individual health insurance employer to 
request genetic information or to use a person's genetic information in 
their decisions on the hiring and firing of an individual.
  It recognizes that all individuals, whether they are healthy or sick, 
and all medical information, whether genetic or otherwise, should be 
afforded the same protection under the law. And that is a critical 
point.
  The practical implication of it is, if you have a family history 
where you sense or may think there may be a problem that you have 
because of your genetic makeup and you are not going forward and being 
tested, your willingness to see a doctor to see if that genetic problem 
may actually exist for you is not going to be limited because you are 
not going to be concerned with the fact, if that information comes 
forward or is obtained that it might be used to limit your ability to 
get a job, keep a job, or get health insurance, or keep health 
insurance, or, alternatively, that your children or children's children 
might also, if the genetic information is confirmed, be subject to 
discrimination for work or for obtaining insurance.
  It will allow people to be much more aggressive in using this brand 
new science to assist them in getting their health in order and making 
sure that people and their children are properly screened for what can 
be produced from genetic information.
  This is going to be such a hugely valuable tool for our society and 
for people. There should be nothing in our society which says to people 
you really can't afford to do this, because if you take this type of 
test, you see this doctor, if you have this type of review, you are 
going to find out something that might lead to your quality of life 
being dramatically reduced because you lose your job or you lose your 
insurance.
  The legislation is appropriate. Those who questions its need, do so 
out of legitimate concern that it is a new Government law, new Federal 
legislation, and they do not see that the problem exists, I guess, in 
many instances or, if it does exist, they don't think it is significant 
enough to address. To those folks, I would simply say this: Yes, the 
problem does exist. Yes, we have instances of discrimination occurring 
both in the workplace and in the insurance industry. They have been 
limited but, more importantly than that, this is a science which holds 
such tremendous potential for dramatically improving the way we deliver 
health care as a society that we do not want anything to stand in its 
way to chill its use or to undermine the willingness of Americans to 
participate in studies of themselves or their families or their 
genealogy which might undermine the advantage which this new science 
gives them in getting better health care.
  It is an appropriate piece of legislation. I think it puts the 
emphasis in the right place, which is reasoned and appropriate in how 
we handle genetic information and we avoid discrimination in the use of 
that information.
  Again, I congratulate Senator Enzi for setting this out as the first 
item he has moved out of the HELP Committee under his chairmanship. It 
reflects his commitment to making sure health care in this country is 
not only of a better quality, but that the science that backs up health 
care continues to be robust as it pursues cures for all Americans.
  I yield the floor.
  Mr. ENZI. Mr. President, I thank and congratulate the Senator from 
New Hampshire, Mr. Gregg, for his efforts on this bill. He was actually 
the committee chairman who made sure that all the parties came 
together, which around here is no small task, and came up with this 
package that does what our purpose was. He did it with such diligence, 
care, and completeness.
  Rather than take the time to put out a new committee book about the 
bill, we used his book. It gives an explanation, and it also shows that 
the bill didn't need to be changed from what he had. So it is actually 
Senator Gregg's efforts that brought this bill to the floor and brought 
it in this complete fashion and moved it along so quickly. We thank him 
for all of his information and help.
  I yield the floor.
  The PRESIDING OFFICER. The Senator from Iowa.
  Mr. HARKIN. Mr. President, we are now considering a bill that I am 
pleased to have cosponsored and which I worked on with my colleagues 
for a number of years, the Genetic Information Nondiscrimination Act of 
2005.
  I thank our chairman, Senator Enzi, for expeditiously bringing this 
to the floor and guiding it, hopefully, to early passage tomorrow.
  I also compliment Senator Snowe on being the chief sponsor of this 
bill, and for being in the forefront of this fight to protect people 
who want to understand perhaps the predispositions they might have for 
any illnesses because of their genetic history.

[[Page 2513]]

  As we know, the bill makes it illegal for an employer or health 
insurer to discriminate against an individual based on genetic 
information.
  The good news is that advances in genetics have opened major 
opportunities for medical programs. We are now able to diagnose and 
treat diseases earlier and more efficiently than ever before.
  Again, my deepest thanks to Francis Collins for his great leadership 
at the National Human Genome Institute, for guiding and directing the 
mapping and the sequencing of the human gene. He has provided great 
leadership. I have followed it since Dr. Collins first took over, I 
think back in 1993, if I am not mistaken. It has just been amazing to 
watch this happen.
  Some people said it was going to take 15 to 20 years to get this 
done, but thanks to Dr. Collins and his leadership and the great staff 
that he assembled at the National Human Genome Institute, we completed 
the entire mapping and sequencing by April of 2003.
  We have this great information. You can go right on the Internet and 
you can find it all right there. It is all out there for the entire 
world to use. Quite frankly, they are using this genetic information on 
the human gene to understand and to do more research into the 
background of many of our illnesses that have genetic markers for them.
  As a result, we are now able to diagnose and treat diseases earlier 
and more efficiently than ever before. I can daresay that in the years 
to come we are going to have more and more breakthroughs by scientists 
who are using this toolbox--as I have often called it--of genetic 
information that we have derived from the mapping and sequencing of the 
human genome.
  That is the good news. The bad news is that this same genetic 
information could be used by employers or insurance companies to 
discriminate in hiring or in insurance decisions. Health insurers could 
charge higher copayments or deny coverage altogether to individuals who 
have a genetic predisposition for certain diseases.
  When we passed the Americans With Disabilities Act in 1990, we had 
little understanding of the range of genetic information that could be 
used by employers and health insurers to discriminate.
  The problem is that the ADA does not expressly address genetic 
discrimination. What is more, the Supreme Court has made it more 
difficult to apply the ADA to discrimination based on the genetic 
information.
  I think there have been mistaken decisions of the Supreme Court, but, 
nonetheless, they have spoken.
  It is incumbent upon us to pass legislation to clarify this. That is 
what this bill is all about--prohibiting enrollment restrictions and 
premium adjustments based on an insurer's ability to determine 
someone's genetic makeup. The bill prohibits employers from 
discriminating and hiring discrimination.
  We want people to access the diagnostic tools scientists and 
researchers have and will come up with in the future so they can take 
steps to protect themselves to prevent perhaps the onset of an illness 
that can be caused by a genetic predisposition. For example, there 
could be a genetic marker, as we know, for breast cancer. Both of my 
sisters passed away from breast cancer at too early an age. They had 
families and their children are grown up; now they have children who 
are growing up. Of course, there is a great concern among them about 
the genetic background of their mother, or grandmother in this case. 
They should, if they want to, be able to access information to better 
protect themselves. They should know if they get early screening, early 
mammograms, and whether they might want to control their diet so they 
would be more acutely aware the earlier they detected this, if, God 
forbid, it should happen to one of them, that they would be able to 
address that and to live full and meaningful lives.
  We know if breast cancer is addressed early, the chances of someone 
surviving and living a whole, full life is great. So many people do not 
detect it early is the problem. We want people to access the diagnostic 
tools and not be afraid that if they get this information, they might 
lose their job, their health care premiums would go up, that sort of 
thing. That is what this bill is about.
  I thank my colleague and my friend from Wyoming, the chairman of our 
committee, for bringing this expeditiously to the Senate floor. 
Hopefully, the House will take steps also to pass it very soon, and we 
can send it to the President. It is incumbent upon the House to take 
prompt action and get it to the President's desk as soon as possible.


                                Wellness

  While I am here, I diverge a little bit, but not a lot, to briefly 
mention an issue that does not relate directly to the provisions of the 
bill but does relate to the issue of prevention and the issue of health 
and how much money we are spending in this country. I will talk about 
the issue of wellness and the role that Government can play in 
promoting wellness and prevention in order to help address a crisis in 
our health care system, the crisis of exploding costs.
  As the Senate takes important bipartisan steps forward to prohibit 
discrimination based on genetic information, as we are doing here 
today, we can and must take bipartisan steps forward to promote 
wellness. We have heard a lot recently about the projected shortfall in 
Social Security over the next 75 years of $3.7 trillion. That is a lot 
of money in anyone's book. That is over the next 75 years. That pales 
compared to the shortfall in Medicare, which is estimated to be $17 
trillion. That is the real crisis. Social Security is not a crisis; the 
real crisis is Medicare.
  It is not only the Federal budget that is being eaten alive, it is 
State budgets, family budgets, it is corporate budgets. Look at the 
numbers: Some 75 percent of health care costs in the United States are 
accounted for by chronic conditions and diseases, many of which are 
preventable. Last year, nationally, we spent more than $100 billion on 
obesity alone. Medicare and Medicaid picked up almost half that tab. 
There was an address the other day by the chairman of General Motors 
talking about what it is doing to their company: $1,500 of the cost of 
every car they produce is now because of health care insurance costs.
  It is unwise uneconomic and totally unsustainable. If we are going to 
control Medicare and Medicaid costs and private sector health care 
costs as well, we need a significant, even a radical change of course 
in our country. We need a fundamental paradigm shift away from a sick 
care system. That is what we have now. In other words, if you get sick, 
you get care, but there is precious little out there now that 
encourages and gives incentives to stay healthy in the first place. We 
need a paradigm shift toward preventing disease, promoting good 
nutrition, encouraging fitness and wellness. This will be good for the 
physical health of the American people, and it will be good for the 
fiscal health of government, corporations, private businesses, and 
family budgets.
  I believe strongly in personal responsibility. I believe people 
should take charge of their own health. I also believe in corporate 
responsibility, community responsibility, and government 
responsibility. I make no bones about it: It is past time for the 
Federal Government to step to the plate in a very robust way.
  To that end, I introduced the HELP America Act last year, otherwise 
known as the Healthier Lifestyle and Prevention Act. This legislation 
takes a comprehensive approach to wellness and prevention. It provides 
tools and incentives to schools, employers, and communities. It aims to 
create better nutrition, physical activity, and mental health 
opportunities for kids in schools. I saw some data recently that said 
that 80 percent of elementary school kids in America today get less 
than 1 hour of physical exercise a week in school. That is 
unconscionable. We have to have better physical activity and nutrition 
for our kids in school.
  The bill creates better nutrition, physical activity, and mental 
health opportunities for kids in school. It gives the Federal Trade 
Commission

[[Page 2514]]

authority to regulate unfair marketing to children, especially junk 
food. It provides incentives to build paths, safe sidewalks and bike 
paths. It requires nutrition labeling on menus in chain restaurants. It 
does a lot more than that.
  The HELP America Act is comprehensive. It is ambitious. But it is 
only at the beginning of a long legislative process. I am confident 
over time we can build a bipartisan consensus to move the Federal 
Government toward wellness, prevention, away from sickness, more in 
keeping people healthy. We have already made some progress.
  Several elements of the HELP America Act passed late last year. For 
example, we secured $440 million for research at the National 
Institutes of Health into the causes and cures of obesity. We sent more 
than $50 million in grants to States to fund programs to address 
nutrition, physical activity, and obesity. We secured some $114 million 
for tobacco prevention and cessation activities at the Centers for 
Disease Control and Prevention. We also expanded the fresh fruit and 
vegetable program.
  Three years ago when we passed the farm bill, I put a provision in 
there to test a theory. My theory was if we gave kids in school free 
fresh fruits and vegetables--not just at lunch but anytime during the 
day--they would eat them, they would like them, they would not be 
putting money in the vending machine to buy junk food, they would study 
better, they would be better behaved, and everyone would benefit. So we 
tried out the theory. We got a small amount of money in the farm bill. 
We took 4 States, 25 schools in each State, 100 schools, and 1 Indian 
reservation in Arizona. We provided enough money to bring free fresh 
fruits and vegetables into these schools. What has happened? In each 
one of those schools, it has been a resounding success. Not one of 
those schools has asked to be taken off the program. In fact, every 
single one of them has asked, please, don't take this away.
  We have now gone from four States to nine States. We have gone from 
100 schools to a little over 200 schools. It is growing. Visit one of 
these schools where these kids get the free fresh fruits and 
vegetables.
  These little kids in school, at about 9:30 in the morning, get the 
``growlies,'' they get a little antsy. If they have an apple to eat or 
an orange or a clementine or kiwi fruit or a banana or grapes, or they 
get fresh broccoli in the afternoon or cauliflower or carrot sticks, 
you would be amazed how much they eat of these fruits and vegetables.
  As I said, the teachers love it. The principals find it is a great 
system. Even parents now are weighing in. Parents love it. Kids are 
even going home and asking their parents to buy these at grocery 
stores. Again, I mention that because this is getting to the early 
part, getting kids to eat the proper foods, getting them tuned in to 
fresh fruits and vegetables at an early age. But there is so much we 
have to do. It is time for the Federal Government to start moving in 
that direction. If we do not, we are never going to be able to save 
Medicare and Medicaid, we are never going to be able to pay for it. It 
is going to bust us.
  So we have to start preventing, we have to start keeping people 
healthy in the first place. That is what this is all about--so that we 
have taken some positive steps forward. They are small steps, kind of 
baby steps, but I am convinced there is a solid, bipartisan consensus 
to pursue this course of wellness and prevention. I know that Senator 
Frist has been one of the great leaders in this area of prevention and 
wellness. I look forward to working on this agenda with my colleagues 
of both parties in the months ahead. I hope we can get a strong, 
bipartisan effort.
  I hope the President, who, by the way, is a great example of physical 
fitness--though I may have some disagreements with the President on 
some things, that is one thing I agree with him on. He is good at 
physical fitness. He does not smoke. He does not drink. As far as I 
know, he eats well and exercises well.


                      Wishing Senator Specter Well

  Mr. President, I understand this is now on the news wires, so I want 
to comment on something that has just come to my attention this 
afternoon. I received a call from one of the best friends I have ever 
had, a close friend here in the Senate, someone whom I have admired for 
his personal qualities as well as for his senatorial qualities for so 
many years. I have been privileged to work with him side by side now 
going back almost 20 years.
  I received a call a little while ago from Senator Specter of 
Pennsylvania, who informed me that doctors at the University of 
Pennsylvania Hospital had diagnosed him with Hodgkin's disease. Well, 
it kind of took my breath away. There is no one for whom I have a 
higher regard than Senator Arlen Specter. I think how hard he has 
worked to double the funding for NIH for basic research, and then to 
have this happen. But he assured me that it is at an early stage. The 
doctors have said he has an excellent chance of full recovery and will 
be back here very soon after our break next week. He will have to 
undergo some treatments, but I understand the doctors say that Arlen 
Specter has an excellent chance of full recovery.
  I know all of my colleagues wish him the best. Our prayers are with 
him. We know he is a strong person. He has a strong will. He is a 
person of strong faith. And we know that his will and his faith will 
carry him through. I know we will have Senator Specter back here with 
us leading the charge to make sure we address the real needs of health 
care and biomedical research, to make sure we fulfill our obligations 
in education in this country, where he has been a great leader.
  Again, Mr. President, we wish Senator Specter well, a full and speedy 
recovery, and look forward to having him back here as soon as possible.
  With that, Mr. President, I yield the floor.


                              TITLE XVIII

  Mr. GRASSLEY. Mr. President, it has come to my attention that S. 306 
includes a provision to amend title XVIII of the Social Security Act. 
As chairman of the committee, I am obligated to point out that the 
Finance Committee has primary jurisdiction over title XVIII, as 
amended. The provision in S. 306 that is within the jurisdiction of the 
Finance Committee amends title XVIII relating to Medicare supplemental 
policies. I ask Chairman Enzi to acknowledge that the Senate Finance 
Committee has jurisdiction over title XVIII of the Social Security Act 
and ask that he endeavor to consult on matters before the Health, 
Education, Labor & Pensions Committee that touch on the Senate Finance 
Committee's jurisdiction.
  In order to avoid unnecessary confusion as to the jurisdiction of the 
Finance Committee or further delay in the consideration of this bill, I 
would agree to accommodate your request to withhold any objection to 
the Senate's consideration of S. 306 with the acknowledgment that this 
provision and title XVIII generally are in the jurisdiction of the 
Finance Committee. This does not represent any waiver of jurisdiction 
on the part of the Finance Committee on this subject.
   I ask the chairman of the HELP Committee, Senator Enzi, whether he 
would agree to this request.
  Mr. ENZI. Mr. President, I tell my friend that I do acknowledge that 
title XVIII of the Social Security Act is within the jurisdiction of 
the Senate Finance Committee. The matter before the Senate makes 
amendments to the Employee Retirement and Income Security Act and the 
Public Health Service Act. The section to which you have raised 
concerns was included as a conforming amendment to ensure consistency 
in Federal policy. I want to reassure my friend that I have every 
intention of respecting the jurisdiction of all Senate committees and 
will endeavor to consult with him on all matters before my committee 
that touch on the jurisdiction of the Senate Finance Committee. I ask 
my friend to provide me the same courtesy.
  Mr. GRASSLEY. I agree and will also endeavor to consult with the 
Senator on matters before the Senate Finance Committee that are in the 
jurisdiction of the HELP Committee.
  Mr. JEFFORDS. Mr. President, all of us are privileged to be living in 
an era

[[Page 2515]]

of unprecedented scientific discovery in the biological sciences. Since 
1953, when James Watson and Francis Crick first identified the 
structure of DNA or the double helix we have relentlessly increased our 
ability to decipher an individual's hereditary information. At the time 
of their discovery, Watson and Crick said that they had ``found the 
secret of life'' and to be certain, life, as we know it, has not been 
the same since.
  Today, we have the entire genetic map--the human genome--that is 
revealing a greater understanding of a range of diseases and their 
treatment. We also have a much greater capacity to know an individual's 
biological destiny as it is encoded in their DNA, which is essentially 
a personal genetic blueprint of their current biology as well as a 
predictor of their biological future. The benefit of knowing this 
information cannot be overstated. It can save countless lives. Part of 
the challenge of having this information is to ensure that it not be 
used unfairly to influence an individual's sociological destiny.
  This is the reason I am joining with Senator Snowe and our other 
colleagues in support of S. 306, the Genetic Information 
Nondiscrimination Act of 2005. S. 306 will prohibit discrimination 
against individuals based on their genetic makeup in both health 
insurance and employment. This legislation represents a major 
contribution to civil rights law. It is a victory for consumers, health 
insurers and health care providers; and it is a victory for employees 
and employers. It is the result of almost seven years of effort and it 
is identical to a measure that passed the Senate during the 108th 
Congress by a vote of 95 to 0.
  Together with the much-deserved excitement over the potential of 
genetic research, there have also been long-standing concerns that 
genetic information, in the wrong hands, could be misused. Many people 
have argued that an individual's genetic information which may indicate 
a predisposition to a particular disease could be used to deny that 
individual health insurance or employment opportunities. The promise of 
better health would instead become a potential for greater 
discrimination and disadvantage. The Genetic Information 
Nondiscrimination Act of 2005 is designed to address those concerns.
  Existing antidiscrimination law has been enacted over the years as a 
means of correcting longstanding abuses in voter rights, employment, 
housing and education. However, under current law a person who has 
suffered employment or health insurance discrimination because of their 
genetic makeup has very little, if any, recourse to legal remedies. 
This legislation addresses this problem by creating new enforceable 
rights for individuals similar to those available under existing civil 
rights, education and fair employment law.
  It is important to note that to date, there has not been a pattern or 
clear prevalence of genetic discrimination. However, there is anecdotal 
evidence that people have refused to take genetic tests because of 
their fear that the predictive information would lead to 
discrimination. We know the science is rapidly moving forward and we 
are learning more every day about the ``predictive'' correlation 
between genetic markers and certain diseases. It is not difficult to 
imagine such discrimination occurring in the near future. So in a 
sense, we can take that rare opportunity to be ahead of the curve and 
enact legislation to preempt discriminatory practices and prevent them 
from ever happening.
  I believe the compromise legislation we consider today will be 
successful in preventing abuses in the insuring of health services and 
employment. However, it is extremely important that we remain vigilant 
against this type of discrimination from ever getting a foothold in our 
society and if this measure proves insufficient and needs to be 
strengthened, then we will be back to correct the problems and that 
effort will have my support.
  As I mentioned earlier, the genesis of this legislation links to many 
years of effort on the part of several of our colleagues. My friend, 
Senator Snowe, has for many years been the leader of one effort in 
which I was proud to join, together with Senators Frist, Enzi, Collins 
and Hagel. In another keystone effort, the previous minority leader, 
Senator Daschle, joined with Senators Kennedy, Dodd and Harkin to 
delineate the need for employment protections. All have contributed 
extensively to a better understanding of the many critical and complex 
definitions that are the heart of this legislation. We could not have 
been successful last Congress in weaving an agreement between these 
bills without the commitment of Senator Gregg, who as chairman of the 
HELP Committee during the 108th Congress, devoted his energies to 
finding a middle ground that made today's bipartisan agreements 
possible. Finally, I commend Senator Enzi, the current chairman of the 
HELP Committee, not only because he elevated the importance of this 
bill by moving it to the front of the legislative calendar, but also 
for the many years of effort he has dedicated to seeing this measure 
enacted. It is wholly appropriate that he is there as chairman to see 
it cross the legislative finish line.
  Mr. President, I am pleased at the willingness both sides have shown 
to work through the many difficult aspects of this key issue. Through 
many meetings and discussions, we have been able to reach agreements on 
an array of important issues that have improved and strengthened the 
legislation. I look forward to continuing this cooperative approach as 
we move to enact this important and landmark initiative and I urge our 
colleagues in the House to pass it in the near. The President supports 
this legislation, and it is my hope that we can enact it into law 
before the end of this Congress. I urge all of my colleagues to vote in 
its favor.
  Mrs. CLINTON. I rise today to express my support for S. 306, the 
Genetic Nondiscrimination Act. I am proud to be an original cosponsor 
of this bill, and I thank Senator Snowe for her leadership on this 
issue. I urge my colleagues to vote for passage of this important 
legislation.
  The Genetic Nondiscrimination Act is a crucial first step to 
protecting individuals and families from genetic discrimination. This 
legislation prevents insurers from denying coverage or raising premiums 
based upon the results of genetic tests. It prohibits insurance 
companies and employers from requiring individuals to undergo genetic 
testing. And finally, this legislation protects workers from employment 
discrimination based on their genetic information.
  Genetic testing holds great promise for medicine. Knowing you are 
prone to cancer or heart disease or Lou Gehrig's disease may give you a 
fighting chance. But just try, with that information in hand, to get 
health insurance in a system without strong protections against 
discrimination for pre-existing or genetic conditions. As genetic 
information allows us to predict illness with greater certainty, these 
tests threaten to turn the most susceptible patients into the most 
vulnerable.
  Each vaunted scientific breakthrough brings with it new challenges to 
our health system and this legislation will help maximize advancing 
technology's benefits while protecting Americans from the use of 
genetic information as a tool for discrimination. With this bill, we 
can help patients access the latest advances in science without 
sacrificing their personal privacy.
  Genetic discrimination has many victims: those who are denied health 
coverage, those who lose job opportunities, and those who forego 
important tests out of fear that they will be victimized. We should 
encourage people to learn more about their health so that they can make 
informed decisions about treatment and care, not discourage them from 
seeking information with threats of unemployment or loss of insurance.
  By passing the Genetic Nondiscrimination Act into law, we will 
address at the Federal level an issue that has been recognized by a 
majority of states. More than 40 States have enacted genetic 
nondiscrimination provisions, and I believe that it is far past the 
time for Congress to follow suit.
  I would also like to note that the Genetic Nondiscrimination Act, 
while a

[[Page 2516]]

good first step, is only the beginning of our work in this area. Many 
who have long championed genetic nondiscrimination support stronger 
protections and tough enforcement provisions.
  Passing the Genetic Nondiscrimination Act will help to put a 
necessary framework in place and we will need the same commitment to 
action in the future to reinforce this framework, and provide strong, 
reliable enforcement for the important civil right that we are 
defending today.
  Again, I would urge my colleagues to support the passage of the 
Genetic Nondiscrimination Act. I also urge the House to take up this 
matter as quickly as possible, to protect the millions of patients that 
might benefit from genetic testing.
  Mr. CORZINE. Mr. President, I am pleased that today the Senate is 
considering legislation designed to prohibit discrimination in health 
insurance and employment based on genetic information.
  In the last decade, biomedical researchers have made great strides in 
genetic research. While these discoveries are critical to researching 
treatments and, ultimately, discovering cures for many diseases, this 
information also has the potential to be used to deny health care 
insurance or employment to an individual who has a genetic 
predisposition to an illness. That is why we must make it illegal for 
employers and health insurers to discriminate against individuals on 
the basis of their genetic information.
  S. 306 is an important step, but it is only a first step. Any 
legislation addressing this issue must include strong enforcement and 
deterrence mechanisms. As this legislation moves forward, I hope its 
enforcement provisions will be strengthened. Without strong 
accountability provisions, there is little to deter employers and 
health insurers from using genetic information inappropriately.
  In addition, I hope that when this legislation is conferenced, the 
conferees will find ways to strengthen the privacy provisions. It is 
essential that our laws keep pace with technological advances and that 
we continue to protect the privacy of our citizens. Advances in 
technology cannot place fundamental American rights at risk.
  Despite my concerns about the enforcement and privacy provisions, I 
believe this legislation is a critical first step and look forward to 
working with my colleagues to continue addressing the important issue 
of genetic discrimination.
  Mr. DODD. Mr. President, I rise today to speak in support of S. 306, 
the Genetic Information Nondiscrimination Act. Before I talk about why 
this bill is so crucial, I want to thank the chairman and ranking 
member of the HELP Committee, Senator Enzi and Senator Kennedy, for 
their efforts on this bill, and for making it one of their first 
priorities in the 109th Congress. Their action sends a strong signal 
about the importance of this legislation.
  I would be remiss if I did not also mention the dedication to this 
issue shown by our former Democratic leader, Senator Tom Daschle. We 
are in a position to pass this bill today as a direct result of the 
work done by Senator Daschle.
  Many of us, on both sides of the aisle, saw the need several years 
ago for legally enforceable rules to maximize the potential benefits of 
genetic information--and minimize its potential dangers. I have worked 
on this issue with many of my colleagues since the 105th Congress. I 
have chaired a hearing in the HELP Committee, and I have introduced 
legislation with several of my colleagues, notably Senator Daschle, 
Senator Kennedy, and Senator Harkin, going back to the 106th Congress.
  The legislation that we will consider today is a bipartisan 
compromise between our bill, and a similar bill introduced by Senator 
Snowe and others. It represents a culmination of the efforts of many of 
us to establish such rules. It is an enormous step forward, and I would 
like to acknowledge the hard work of everyone who was involved in 
crafting this legislation.
  Over the past decade, the science of genetics has developed at an 
astonishing pace. The mapping of the human genome is undoubtedly one of 
the greatest scientific achievements of this generation. We have not 
even completely grasped the wide array of potential benefits that may 
come from our newfound genetic knowledge.
  Certainly, the impact on our health will be profound. Doctors will be 
able to read our unique genetic blueprints and predict the likelihood 
of developing diseases such as cancer, Alzheimer's, or Parkinson's. 
They will also be able to use an individual's genetic information to 
develop treatments for these same diseases, and target individuals with 
the treatment that will work best for them. This is not science 
fiction. It is already beginning to happen.
  For all the promise of the genetic age, there is also an inherent 
threat. Science has outpaced the law and Americans are worried, and 
rightly so, that their genetic information will be used--not to improve 
their health--but to deny them health insurance or employment. There is 
no information more personal and private than genetic information--and 
no information more worthy of special protection. Our genetic code is 
the very blueprint of our selves. It is with us from birth, and to some 
extent it determines who we will become. What an incredibly powerful 
tool, with its vast potential to help us live healthier lives. But the 
nature of genetic information also makes it dangerous to the individual 
if used incorrectly.
  This bill provides significant new protections against the misuse of 
genetic information. It ensures that Americans who are genetically 
predisposed to health conditions will not lose or be denied health 
insurance, jobs, or promotions based on their genetic makeup. Reaching 
an agreement on this legislation means that our laws dealing with 
genetic information can begin to catch up to the reality of our 
technological capability in the field.
  With these protections in place, individuals need not feel reluctant 
to get the tests that may save or improve their lives. Although the 
Americans with Disabilities Act, ADA, and the Health Insurance 
Portability and Accountability Act, HIPAA, took important steps towards 
preventing genetic discrimination, this legislation is more 
specifically tailored to prohibiting its misuse. Health plans and 
health insurance issuers will not be allowed to underwrite, determine 
premiums, or decide on eligibility for enrollment based on genetic 
information. Employers will not be allowed to alter hiring practices 
based on genetic information. The American public can feel secure in 
the knowledge that their genetic blueprint will not be used to harm 
them, that a genetic marker indicating a possible illness later in life 
will not cause them to lose a job or health insurance.
  Like any compromise, this bill is not perfect. In particular, while 
it poses some important limitations on the collection of personal 
genetic information by insurance companies, it would allow them to 
collect this information, without consent, once an individual is 
enrolled in a health plan. While insurers are expressly prohibited from 
using this information for the purposes of underwriting, I am concerned 
that once they have this information, it may be difficult to control 
how it is used and who has access to it. We all know from experience 
that the difficulty of protecting information increases exponentially 
with each additional person who has access to that information. As this 
bill becomes law--and I sincerely hope it will--I will monitor closely 
how it is implemented, and the extent to which privacy is protected. We 
may need to revisit this issue in the future.
  Mr. President, despite this shortcoming, I support this bill, as it 
represents a vast improvement over current law in many ways. I hope 
that it will become law in the very near future. This Chamber passed a 
similar bill last year by a vote of 95 to 0. Unfortunately, the House 
did not take up this important legislation. I urge them to do so as 
soon as possible. We all should feel free to make our health care 
decisions based on our health care needs, not based on fear. Today, we 
are close to making that goal a reality.

[[Page 2517]]

  The PRESIDING OFFICER. The Senator from Wyoming.
  Mr. ENZI. Mr. President, I ask unanimous consent for an additional 2 
minutes to finish this up.
  The PRESIDING OFFICER. Without objection, it is so ordered.
  Mr. ENZI. Mr. President, I thank the Senator from Iowa and all others 
who have spoken today. It has been a very positive day. I thank the 
Presiding Officer for the care with which he reviewed this bill and the 
issues he brought up and the resolution that I am sure we have gotten.
  I would be very remiss if I did not thank the staffs of all of those 
people who help us dig into these issues to be sure we are doing the 
right thing. They bring some different perspectives that add to coming 
up with the right solution.
  I particularly thank those people from the committee on both sides of 
the aisle for their efforts. I thank Kim Monk, David Thompson, Bill 
Pewen, David Bowen, Holly Fechner, Sean Donohue, Ilyse Schuman, Andrew 
Patzman, David Nexon, Adam Gluck, Carolyn Holmes, Kate Leone, Ben 
Berwick, Jennifer Duck, and Steve Northrup.
  I particularly mention Katherine McGuire, who is the new staff 
director, who was able to put together all of the personnel we needed 
and then a committee retreat, as well as coordinating and moving all 
these things along, so we could be at this point this soon.
  We thank all those people for their individual efforts as well as the 
team efforts they put in.
  At this point, I think we are ready to move on. I yield the floor and 
thank everybody for their participation.


                            Amendment No. 13

              (Purpose: To provide a complete substitute)

  The PRESIDING OFFICER. Under the previous order, amendment No. 13 is 
agreed to.
  The amendment (No. 13) was agreed to.
  (The amendment is printed in today's Record under ``Text of 
Amendments.'')
  The PRESIDING OFFICER. The substitute, as amended, is agreed to.
  The committee amendment in the nature of a substitute, as amended, 
was agreed to.
  The PRESIDING OFFICER. The clerk will read the bill for the third 
time.
  The bill was ordered to be engrossed for a third reading and was read 
the third time.
  Mr. ENZI. Mr. President, I suggest the absence of a quorum.
  The PRESIDING OFFICER. The clerk will call the roll.
  The legislative clerk proceeded to call the roll.
  Mr. FRIST. Mr. President, I ask unanimous consent that the order for 
the quorum call be rescinded.
  The PRESIDING OFFICER. Without objection, it is so ordered.

                          ____________________