[Congressional Record (Bound Edition), Volume 154 (2008), Part 6]
[House]
[Pages 7499-7520]
[From the U.S. Government Publishing Office, www.gpo.gov]




           GENETIC INFORMATION NONDISCRIMINATION ACT OF 2008

  Mr. GEORGE MILLER of California. Madam Speaker, pursuant to House 
Resolution 1156, I call up the bill (H.R. 493) to prohibit 
discrimination on the basis of genetic information with respect to 
health insurance and employment, with a Senate amendment thereto, and 
ask for its immediate consideration.
  The Clerk read the title of the bill.
  The SPEAKER pro tempore. The Clerk will designate the Senate 
amendment.
  The text of the Senate amendment is as follows:

       Senate amendment:
       Strike out all after the enacting clause and insert:

     SECTION 1. SHORT TITLE; TABLE OF CONTENTS.

       (a) Short Title.--This Act may be cited as the ``Genetic 
     Information Nondiscrimination Act of 2008''.
       (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.

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 PROVISIONS

Sec. 301. Severability.
Sec. 302. Child labor protections.

     SEC. 2. FINDINGS.

       Congress makes the following findings:
       (1) Deciphering the sequence of the human genome and other 
     advances in genetics open major

[[Page 7500]]

     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 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) 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--
       (1) in paragraph (2)(A), by inserting before the semicolon 
     the following: ``except as provided in paragraph (3)''; and
       (2) by adding at the end the following:
       ``(3) No group-based discrimination on basis of genetic 
     information.--
       ``(A) In general.--For purposes of this section, a group 
     health plan, and a health insurance issuer offering group 
     health insurance coverage in connection with a group health 
     plan, may not adjust premium or contribution amounts for the 
     group covered under such plan on the basis of genetic 
     information.
       ``(B) Rule of construction.--Nothing in subparagraph (A) or 
     in paragraphs (1) and (2) of subsection (d) shall be 
     construed to limit the ability of a health insurance issuer 
     offering health insurance coverage in connection with a group 
     health plan to increase the premium for an employer based on 
     the manifestation of a disease or disorder of an individual 
     who is enrolled in the plan. In such case, the manifestation 
     of a disease or disorder in one individual cannot also be 
     used as genetic information about other group members and to 
     further increase the premium for the employer.''.
       (b) Limitations on Genetic Testing; Prohibition on 
     Collection of Genetic Information; Application to All 
     Plans.--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, and 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.--Paragraph (1) shall not be 
     construed to limit the authority of a health care 
     professional who is providing health care services to an 
     individual to request that such individual undergo a genetic 
     test.
       ``(3) Rule of construction regarding payment.--
       ``(A) In general.--Nothing in paragraph (1) shall be 
     construed to preclude a group health plan, or a health 
     insurance issuer offering health insurance coverage in 
     connection with a group health plan, from obtaining and using 
     the results of a genetic test in making a determination 
     regarding payment (as such term is defined for the purposes 
     of applying the regulations promulgated by the Secretary of 
     Health and Human Services under part C of title XI of the 
     Social Security Act and section 264 of the Health Insurance 
     Portability and Accountability Act of 1996, as may be revised 
     from time to time) consistent with subsection (a).
       ``(B) Limitation.--For purposes of subparagraph (A), a 
     group health plan, or a health insurance issuer offering 
     health insurance coverage in connection with a group health 
     plan, may request only the minimum amount of information 
     necessary to accomplish the intended purpose.
       ``(4) Research exception.--Notwithstanding paragraph (1), a 
     group health plan, or a health insurance issuer offering 
     health insurance coverage in connection with a group health 
     plan, may request, but not require, that a participant or 
     beneficiary undergo a genetic test if each of the following 
     conditions is met:
       ``(A) The request is made, in writing, pursuant to research 
     that complies with part 46 of title 45, Code of Federal 
     Regulations, or equivalent Federal regulations, and any 
     applicable State or local law or regulations for the 
     protection of human subjects in research.
       ``(B) The plan or issuer clearly indicates to each 
     participant or beneficiary, or in the case of a minor child, 
     to the legal guardian of such beneficiary, to whom the 
     request is made that--
       ``(i) compliance with the request is voluntary; and
       ``(ii) non-compliance will have no effect on enrollment 
     status or premium or contribution amounts.
       ``(C) No genetic information collected or acquired under 
     this paragraph shall be used for underwriting purposes.
       ``(D) The plan or issuer notifies the Secretary in writing 
     that the plan or issuer is conducting activities pursuant to 
     the exception provided for under this paragraph, including a 
     description of the activities conducted.
       ``(E) The plan or issuer complies with such other 
     conditions as the Secretary may by regulation require for 
     activities conducted under this paragraph.
       ``(d) Prohibition on Collection of Genetic Information.--
       ``(1) In general.--A group health plan, and a health 
     insurance issuer offering health insurance coverage in 
     connection with a group health plan, shall not request, 
     require, or purchase genetic information for underwriting 
     purposes (as defined in section 733).
       ``(2) Prohibition on collection of genetic information 
     prior to enrollment.--A group health plan, and a health 
     insurance issuer offering health insurance coverage in 
     connection with a group health plan, shall not request, 
     require, or purchase genetic information with respect to any 
     individual prior to such individual's enrollment under the 
     plan or coverage in connection with such enrollment.
       ``(3) Incidental collection.--If a group health plan, or a 
     health insurance issuer offering health insurance coverage in 
     connection with a group health plan, obtains genetic 
     information incidental to the requesting, requiring, or 
     purchasing of other information concerning any individual, 
     such request, requirement, or purchase shall not be 
     considered a violation of paragraph (2) if such request, 
     requirement, or purchase is not in violation of paragraph 
     (1).
       ``(e) Application to All Plans.--The provisions of 
     subsections (a)(1)(F), (b)(3), (c), and (d), and subsection 
     (b)(1) and section 701 with respect to genetic information, 
     shall apply to group health plans and health insurance 
     issuers without regard to section 732(a).''.
       (c) Application to Genetic Information of a Fetus or 
     Embryo.--Such section is further amended by adding at the end 
     the following:
       ``(f) Genetic Information of a Fetus or Embryo.--Any 
     reference in this part to genetic information concerning an 
     individual or family member of an individual shall--
       ``(1) with respect to such an individual or family member 
     of an individual who is a pregnant woman, include genetic 
     information of any fetus carried by such pregnant woman; and
       ``(2) with respect to an individual or family member 
     utilizing an assisted reproductive technology, include 
     genetic information of any embryo legally held by the 
     individual or family member.''.
       (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) a dependent (as such term is used for purposes of 
     section 701(f)(2)) of such individual, and

[[Page 7501]]

       ``(B) any other individual who is a first-degree, second-
     degree, third-degree, or fourth-degree relative of such 
     individual or of an individual described in subparagraph (A).
       ``(6) Genetic information.--
       ``(A) In general.--The term `genetic information' means, 
     with respect to any individual, information about--
       ``(i) such individual's genetic tests,
       ``(ii) the genetic tests of family members of such 
     individual, and
       ``(iii) the manifestation of a disease or disorder in 
     family members of such individual.
       ``(B) Inclusion of genetic services and participation in 
     genetic research.--Such term includes, with respect to any 
     individual, any request for, or receipt of, genetic services, 
     or participation in clinical research which includes genetic 
     services, by such individual or any family member of such 
     individual.
       ``(C) Exclusions.--The term `genetic information' shall not 
     include information about the sex or age of any 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 (including obtaining, 
     interpreting, or assessing genetic information); or
       ``(C) genetic education.
       ``(9) Underwriting purposes.--The term `underwriting 
     purposes' means, with respect to any group health plan, or 
     health insurance coverage offered in connection with a group 
     health plan--
       ``(A) rules for, or determination of, eligibility 
     (including enrollment and continued eligibility) for benefits 
     under the plan or coverage;
       ``(B) the computation of premium or contribution amounts 
     under the plan or coverage;
       ``(C) the application of any pre-existing condition 
     exclusion under the plan or coverage; and
       ``(D) other activities related to the creation, renewal, or 
     replacement of a contract of health insurance or health 
     benefits.''.
       (e) ERISA Enforcement.--Section 502 of the Employee 
     Retirement Income Security Act of 1974 (29 U.S.C. 1132) is 
     amended--
       (1) in subsection (a)(6), by striking ``(7), or (8)'' and 
     inserting ``(7), (8), or (9)'';
       (2) in subsection (b)(3), by striking ``The Secretary'' and 
     inserting ``Except as provided in subsections (c)(9) and 
     (a)(6) (with respect to collecting civil penalties under 
     subsection (c)(9)), the Secretary''; and
       (3) in subsection (c), by redesignating paragraph (9) as 
     paragraph (10), and by inserting after paragraph (8) the 
     following new paragraph:
       ``(9) Secretarial enforcement authority relating to use of 
     genetic information.--
       ``(A) General rule.--The Secretary may impose a penalty 
     against any plan sponsor of a group health plan, or any 
     health insurance issuer offering health insurance coverage in 
     connection with the plan, for any failure by such sponsor or 
     issuer to meet the requirements of subsection (a)(1)(F), 
     (b)(3), (c), or (d) of section 702 or section 701 or 
     702(b)(1) with respect to genetic information, in connection 
     with the plan.
       ``(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 participant or 
     beneficiary 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 the 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 a participant or beneficiary--

       ``(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 participant or 
     beneficiary 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 plan sponsor (or predecessor plan sponsor) 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.
       ``(F) Definitions.--Terms used in this paragraph which are 
     defined in section 733 shall have the meanings provided such 
     terms in such section.''.
       (f) Regulations and Effective Date.--
       (1) Regulations.--The Secretary of Labor shall issue final 
     regulations not later than 12 months after the date of 
     enactment of this Act 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 1 year after the date of 
     enactment of this Act.

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

       (a) Amendments Relating to the Group Market.--
       (1) 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--
       (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 group-based discrimination on basis of genetic 
     information.--
       ``(A) In general.--For purposes of this section, a group 
     health plan, and health insurance issuer offering group 
     health insurance coverage in connection with a group health 
     plan, may not adjust premium or contribution amounts for the 
     group covered under such plan on the basis of genetic 
     information.
       ``(B) Rule of construction.--Nothing in subparagraph (A) or 
     in paragraphs (1) and (2) of subsection (d) shall be 
     construed to limit the ability of a health insurance issuer 
     offering health insurance coverage in connection with a group 
     health plan to increase the premium for an employer based on 
     the manifestation of a disease or disorder of an individual 
     who is enrolled in the plan. In such case, the manifestation 
     of a disease or disorder in one individual cannot also be 
     used as genetic information about other group members and to 
     further increase the premium for the employer.''.
       (2) Limitations on genetic testing; prohibition on 
     collection of genetic information; application to all 
     plans.--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, and 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.--Paragraph (1) shall not be 
     construed to limit the authority of a health care 
     professional who is providing health care services to an 
     individual to request that such individual undergo a genetic 
     test.
       ``(3) Rule of construction regarding payment.--
       ``(A) In general.--Nothing in paragraph (1) shall be 
     construed to preclude a group health plan, or a health 
     insurance issuer offering health insurance coverage in 
     connection with a group health plan, from obtaining and using 
     the results of a genetic test in making a determination 
     regarding payment (as such term is defined for the purposes 
     of applying the regulations promulgated by the Secretary 
     under part C of title XI of the Social Security Act and 
     section 264 of the Health Insurance Portability and 
     Accountability Act of 1996, as may be revised from time to 
     time) consistent with subsection (a).
       ``(B) Limitation.--For purposes of subparagraph (A), a 
     group health plan, or a health insurance issuer offering 
     health insurance coverage in connection with a group health 
     plan, may request only the minimum amount of information 
     necessary to accomplish the intended purpose.
       ``(4) Research exception.--Notwithstanding paragraph (1), a 
     group health plan, or a health

[[Page 7502]]

     insurance issuer offering health insurance coverage in 
     connection with a group health plan, may request, but not 
     require, that a participant or beneficiary undergo a genetic 
     test if each of the following conditions is met:
       ``(A) The request is made pursuant to research that 
     complies with part 46 of title 45, Code of Federal 
     Regulations, or equivalent Federal regulations, and any 
     applicable State or local law or regulations for the 
     protection of human subjects in research.
       ``(B) The plan or issuer clearly indicates to each 
     participant or beneficiary, or in the case of a minor child, 
     to the legal guardian of such beneficiary, to whom the 
     request is made that--
       ``(i) compliance with the request is voluntary; and
       ``(ii) non-compliance will have no effect on enrollment 
     status or premium or contribution amounts.
       ``(C) No genetic information collected or acquired under 
     this paragraph shall be used for underwriting purposes.
       ``(D) The plan or issuer notifies the Secretary in writing 
     that the plan or issuer is conducting activities pursuant to 
     the exception provided for under this paragraph, including a 
     description of the activities conducted.
       ``(E) The plan or issuer complies with such other 
     conditions as the Secretary may by regulation require for 
     activities conducted under this paragraph.
       ``(d) Prohibition on Collection of Genetic Information.--
       ``(1) In general.--A group health plan, and a health 
     insurance issuer offering health insurance coverage in 
     connection with a group health plan, shall not request, 
     require, or purchase genetic information for underwriting 
     purposes (as defined in section 2791).
       ``(2) Prohibition on collection of genetic information 
     prior to enrollment.--A group health plan, and a health 
     insurance issuer offering health insurance coverage in 
     connection with a group health plan, shall not request, 
     require, or purchase genetic information with respect to any 
     individual prior to such individual's enrollment under the 
     plan or coverage in connection with such enrollment.
       ``(3) Incidental collection.--If a group health plan, or a 
     health insurance issuer offering health insurance coverage in 
     connection with a group health plan, obtains genetic 
     information incidental to the requesting, requiring, or 
     purchasing of other information concerning any individual, 
     such request, requirement, or purchase shall not be 
     considered a violation of paragraph (2) if such request, 
     requirement, or purchase is not in violation of paragraph 
     (1).
       ``(e) Application to All Plans.--The provisions of 
     subsections (a)(1)(F), (b)(3), (c) , and (d) and subsection 
     (b)(1) and section 2701 with respect to genetic information, 
     shall apply to group health plans and health insurance 
     issuers without regard to section 2721(a).''.
       (3) Application to genetic information of a fetus or 
     embryo.--Such section is further amended by adding at the end 
     the following:
       ``(f) Genetic Information of a Fetus or Embryo.--Any 
     reference in this part to genetic information concerning an 
     individual or family member of an individual shall--
       ``(1) with respect to such an individual or family member 
     of an individual who is a pregnant woman, include genetic 
     information of any fetus carried by such pregnant woman; and
       ``(2) with respect to an individual or family member 
     utilizing an assisted reproductive technology, include 
     genetic information of any embryo legally held by the 
     individual or family member.''.
       (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 any individual--
       ``(A) a dependent (as such term is used for purposes of 
     section 2701(f)(2)) of such individual; and
       ``(B) any other individual who is a first-degree, second-
     degree, third-degree, or fourth-degree relative of such 
     individual or of an individual described in subparagraph (A).
       ``(16) Genetic information.--
       ``(A) In general.--The term `genetic information' means, 
     with respect to any individual, information about--
       ``(i) such individual's genetic tests,
       ``(ii) the genetic tests of family members of such 
     individual, and
       ``(iii) the manifestation of a disease or disorder in 
     family members of such individual.
       ``(B) Inclusion of genetic services and participation in 
     genetic research.--Such term includes, with respect to any 
     individual, any request for, or receipt of, genetic services, 
     or participation in clinical research which includes genetic 
     services, by such individual or any family member of such 
     individual.
       ``(C) Exclusions.--The term `genetic information' shall not 
     include information about the sex or age of any 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 (including obtaining, 
     interpreting, or assessing genetic information); or
       ``(C) genetic education.
       ``(19) Underwriting purposes.--The term `underwriting 
     purposes' means, with respect to any group health plan, or 
     health insurance coverage offered in connection with a group 
     health plan--
       ``(A) rules for, or determination of, eligibility 
     (including enrollment and continued eligibility) for benefits 
     under the plan or coverage;
       ``(B) the computation of premium or contribution amounts 
     under the plan or coverage;
       ``(C) the application of any pre-existing condition 
     exclusion under the plan or coverage; and
       ``(D) other activities related to the creation, renewal, or 
     replacement of a contract of health insurance or health 
     benefits.''.
       (5) 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 
     succeeding subparagraphs of this paragraph 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), (c), or (d) of section 2702 
     or section 2701 or 2702(b)(1) with respect to genetic 
     information in connection with the plan.
       ``(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 participant or 
     beneficiary 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 the 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.''.
       (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.--

[[Page 7503]]

       ``(1) In general.--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.
       ``(2) Rule of construction.--Nothing in paragraph (1) or in 
     paragraphs (1) and (2) of subsection (e) shall be construed 
     to preclude a health insurance issuer from establishing rules 
     for eligibility for an individual to enroll in individual 
     health insurance coverage based on the manifestation of a 
     disease or disorder in that individual, or in a family member 
     of such individual where such family member is covered under 
     the policy that covers such individual.
       ``(b) Prohibition on Genetic Information in Setting Premium 
     Rates.--
       ``(1) In general.--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.
       ``(2) Rule of construction.--Nothing in paragraph (1) or in 
     paragraphs (1) and (2) of subsection (e) shall be construed 
     to preclude a health insurance issuer from adjusting premium 
     or contribution amounts for an individual on the basis of a 
     manifestation of a disease or disorder in that individual, or 
     in a family member of such individual where such family 
     member is covered under the policy that covers such 
     individual. In such case, the manifestation of a disease or 
     disorder in one individual cannot also be used as genetic 
     information about other individuals covered under the policy 
     issued to such individual and to further increase premiums or 
     contribution amounts.
       ``(c) Prohibition on Genetic Information as Preexisting 
     Condition.--
       ``(1) In general.--A health insurance issuer offering 
     health insurance coverage in the individual market may not, 
     on the basis of genetic information, impose any preexisting 
     condition exclusion (as defined in section 2701(b)(1)(A)) 
     with respect to such coverage.
       ``(2) Rule of construction.--Nothing in paragraph (1) or in 
     paragraphs (1) and (2) of subsection (e) shall be construed 
     to preclude a health insurance issuer from imposing any 
     preexisting condition exclusion for an individual with 
     respect to health insurance coverage on the basis of a 
     manifestation of a disease or disorder in that individual.
       ``(d) 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.--Paragraph (1) shall not be 
     construed to limit the authority of a health care 
     professional who is providing health care services to an 
     individual to request that such individual undergo a genetic 
     test.
       ``(3) Rule of construction regarding payment.--
       ``(A) In general.--Nothing in paragraph (1) shall be 
     construed to preclude a health insurance issuer offering 
     health insurance coverage in the individual market from 
     obtaining and using the results of a genetic test in making a 
     determination regarding payment (as such term is defined for 
     the purposes of applying the regulations promulgated by the 
     Secretary under part C of title XI of the Social Security Act 
     and section 264 of the Health Insurance Portability and 
     Accountability Act of 1996, as may be revised from time to 
     time) consistent with subsection (a) and (c).
       ``(B) Limitation.--For purposes of subparagraph (A), a 
     health insurance issuer offering health insurance coverage in 
     the individual market may request only the minimum amount of 
     information necessary to accomplish the intended purpose.
       ``(4) Research exception.--Notwithstanding paragraph (1), a 
     health insurance issuer offering health insurance coverage in 
     the individual market may request, but not require, that an 
     individual or a family member of such individual undergo a 
     genetic test if each of the following conditions is met:
       ``(A) The request is made pursuant to research that 
     complies with part 46 of title 45, Code of Federal 
     Regulations, or equivalent Federal regulations, and any 
     applicable State or local law or regulations for the 
     protection of human subjects in research.
       ``(B) The issuer clearly indicates to each individual, or 
     in the case of a minor child, to the legal guardian of such 
     child, to whom the request is made that--
       ``(i) compliance with the request is voluntary; and
       ``(ii) non-compliance will have no effect on enrollment 
     status or premium or contribution amounts.
       ``(C) No genetic information collected or acquired under 
     this paragraph shall be used for underwriting purposes.
       ``(D) The issuer notifies the Secretary in writing that the 
     issuer is conducting activities pursuant to the exception 
     provided for under this paragraph, including a description of 
     the activities conducted.
       ``(E) The issuer complies with such other conditions as the 
     Secretary may by regulation require for activities conducted 
     under this paragraph.
       ``(e) Prohibition on Collection of Genetic Information.--
       ``(1) In general.--A health insurance issuer offering 
     health insurance coverage in the individual market shall not 
     request, require, or purchase genetic information for 
     underwriting purposes (as defined in section 2791).
       ``(2) Prohibition on collection of genetic information 
     prior to enrollment.--A health insurance issuer offering 
     health insurance coverage in the individual market shall not 
     request, require, or purchase genetic information with 
     respect to any individual prior to such individual's 
     enrollment under the plan in connection with such enrollment.
       ``(3) Incidental collection.--If a health insurance issuer 
     offering health insurance coverage in the individual market 
     obtains genetic information incidental to the requesting, 
     requiring, or purchasing of other information concerning any 
     individual, such request, requirement, or purchase shall not 
     be considered a violation of paragraph (2) if such request, 
     requirement, or purchase is not in violation of paragraph 
     (1).
       ``(f) Genetic Information of a Fetus or Embryo.--Any 
     reference in this part to genetic information concerning an 
     individual or family member of an individual shall--
       ``(1) with respect to such an individual or family member 
     of an individual who is a pregnant woman, include genetic 
     information of any fetus carried by such pregnant woman; and
       ``(2) with respect to an individual or family member 
     utilizing an assisted reproductive technology, include 
     genetic information of any embryo legally held by the 
     individual or family member.''.
       (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), (b)(3), (c), and (d) of section 2702 
     and the provisions of sections 2701 and 2702(b) to the extent 
     that such provisions apply to genetic information.''.
       (d) Regulations and Effective Date.--
       (1) Regulations.--Not later than 12 months after the date 
     of enactment of this Act, the Secretary of Health and Human 
     Services shall issue final regulations 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 1 year 
     after the date of enactment of this Act; 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 1 year after the 
     date of enactment of this Act.

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

       (a) No Discrimination in Group Premiums Based on Genetic 
     Information.--Subsection (b) of section 9802 of the Internal 
     Revenue Code of 1986 is amended--
       (1) in paragraph (2)(A), by inserting before the semicolon 
     the following: ``except as provided in paragraph (3)''; and
       (2) by adding at the end the following:
       ``(3) No group-based discrimination on basis of genetic 
     information.--
       ``(A) In general.--For purposes of this section, a group 
     health plan may not adjust premium or contribution amounts 
     for the group covered under such plan on the basis of genetic 
     information.
       ``(B) Rule of construction.--Nothing in subparagraph (A) or 
     in paragraphs (1) and (2) of subsection (d) shall be 
     construed to limit the ability of a group health plan to 
     increase the premium for an employer based on the 
     manifestation of a disease or disorder of an individual who 
     is enrolled in the plan. In such case, the manifestation of a 
     disease or disorder in one individual cannot also be used as 
     genetic information about other group members and to further 
     increase the premium for the employer.''.
       (b) Limitations on Genetic Testing; Prohibition on 
     Collection of Genetic Information; Application to All 
     Plans.--Section 9802 of such Code is amended by redesignating 
     subsection (c) as subsection (f) and by inserting after 
     subsection (b) the following new subsections:
       ``(c) Genetic Testing.--
       ``(1) Limitation on requesting or requiring genetic 
     testing.--A group health plan may not request or require an 
     individual or a family member of such individual to undergo a 
     genetic test.

[[Page 7504]]

       ``(2) Rule of construction.--Paragraph (1) shall not be 
     construed to limit the authority of a health care 
     professional who is providing health care services to an 
     individual to request that such individual undergo a genetic 
     test.
       ``(3) Rule of construction regarding payment.--
       ``(A) In general.--Nothing in paragraph (1) shall be 
     construed to preclude a group health plan from obtaining and 
     using the results of a genetic test in making a determination 
     regarding payment (as such term is defined for the purposes 
     of applying the regulations promulgated by the Secretary of 
     Health and Human Services under part C of title XI of the 
     Social Security Act and section 264 of the Health Insurance 
     Portability and Accountability Act of 1996, as may be revised 
     from time to time) consistent with subsection (a).
       ``(B) Limitation.--For purposes of subparagraph (A), a 
     group health plan may request only the minimum amount of 
     information necessary to accomplish the intended purpose.
       ``(4) Research exception.--Notwithstanding paragraph (1), a 
     group health plan may request, but not require, that a 
     participant or beneficiary undergo a genetic test if each of 
     the following conditions is met:
       ``(A) The request is made pursuant to research that 
     complies with part 46 of title 45, Code of Federal 
     Regulations, or equivalent Federal regulations, and any 
     applicable State or local law or regulations for the 
     protection of human subjects in research.
       ``(B) The plan clearly indicates to each participant or 
     beneficiary, or in the case of a minor child, to the legal 
     guardian of such beneficiary, to whom the request is made 
     that--
       ``(i) compliance with the request is voluntary; and
       ``(ii) non-compliance will have no effect on enrollment 
     status or premium or contribution amounts.
       ``(C) No genetic information collected or acquired under 
     this paragraph shall be used for underwriting purposes.
       ``(D) The plan notifies the Secretary in writing that the 
     plan is conducting activities pursuant to the exception 
     provided for under this paragraph, including a description of 
     the activities conducted.
       ``(E) The plan complies with such other conditions as the 
     Secretary may by regulation require for activities conducted 
     under this paragraph.
       ``(d) Prohibition on Collection of Genetic Information.--
       ``(1) In general.--A group health plan shall not request, 
     require, or purchase genetic information for underwriting 
     purposes (as defined in section 9832).
       ``(2) Prohibition on collection of genetic information 
     prior to enrollment.--A group health plan shall not request, 
     require, or purchase genetic information with respect to any 
     individual prior to such individual's enrollment under the 
     plan or in connection with such enrollment.
       ``(3) Incidental collection.--If a group health plan 
     obtains genetic information incidental to the requesting, 
     requiring, or purchasing of other information concerning any 
     individual, such request, requirement, or purchase shall not 
     be considered a violation of paragraph (2) if such request, 
     requirement, or purchase is not in violation of paragraph 
     (1).
       ``(e) Application to All Plans.--The provisions of 
     subsections (a)(1)(F), (b)(3), (c), and (d) and subsection 
     (b)(1) and section 9801 with respect to genetic information, 
     shall apply to group health plans without regard to section 
     9831(a)(2).''.
       (c) Application to Genetic Information of a Fetus or 
     Embryo.--Such section is further amended by adding at the end 
     the following:
       ``(f) Genetic Information of a Fetus or Embryo.--Any 
     reference in this chapter to genetic information concerning 
     an individual or family member of an individual shall--
       ``(1) with respect to such an individual or family member 
     of an individual who is a pregnant woman, include genetic 
     information of any fetus carried by such pregnant woman; and
       ``(2) with respect to an individual or family member 
     utilizing an assisted reproductive technology, include 
     genetic information of any embryo legally held by the 
     individual or family member.''.
       (d) Definitions.--Subsection (d) of section 9832 of such 
     Code is amended by adding at the end the following:
       ``(6) Family member.--The term `family member' means, with 
     respect to any individual--
       ``(A) a dependent (as such term is used for purposes of 
     section 9801(f)(2)) of such individual, and
       ``(B) any other individual who is a first-degree, second-
     degree, third-degree, or fourth-degree relative of such 
     individual or of an individual described in subparagraph (A).
       ``(7) Genetic information.--
       ``(A) In general.--The term `genetic information' means, 
     with respect to any individual, information about--
       ``(i) such individual's genetic tests,
       ``(ii) the genetic tests of family members of such 
     individual, and
       ``(iii) the manifestation of a disease or disorder in 
     family members of such individual.
       ``(B) Inclusion of genetic services and participation in 
     genetic research.--Such term includes, with respect to any 
     individual, any request for, or receipt of, genetic services, 
     or participation in clinical research which includes genetic 
     services, by such individual or any family member of such 
     individual.
       ``(C) Exclusions.--The term `genetic information' shall not 
     include information about the sex or age of any individual.
       ``(8) 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.
       ``(9) Genetic services.--The term `genetic services' 
     means--
       ``(A) a genetic test;
       ``(B) genetic counseling (including obtaining, 
     interpreting, or assessing genetic information); or
       ``(C) genetic education.
       ``(10) Underwriting purposes.--The term `underwriting 
     purposes' means, with respect to any group health plan, or 
     health insurance coverage offered in connection with a group 
     health plan--
       ``(A) rules for, or determination of, eligibility 
     (including enrollment and continued eligibility) for benefits 
     under the plan or coverage;
       ``(B) the computation of premium or contribution amounts 
     under the plan or coverage;
       ``(C) the application of any pre-existing condition 
     exclusion under the plan or coverage; and
       ``(D) other activities related to the creation, renewal, or 
     replacement of a contract of health insurance or health 
     benefits.''.
       (e) Enforcement.--
       (1) In general.--Subchapter C of chapter 100 of the 
     Internal Revenue Code of 1986 (relating to general 
     provisions) is amended by adding at the end the following new 
     section:

     ``SEC. 9834. ENFORCEMENT.

       ``For the imposition of tax on any failure of a group 
     health plan to meet the requirements of this chapter, see 
     section 4980D.''.
       (2) Conforming amendment.--The table of sections for 
     subchapter C of chapter 100 of such Code is amended by adding 
     at the end the following new item:

``Sec. 9834. Enforcement.''.

       (f) Regulations and Effective Date.--
       (1) Regulations.--The Secretary of the Treasury shall issue 
     final regulations or other guidance not later than 12 months 
     after the date of the enactment of this Act 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 1 year after the date of the 
     enactment of this Act.

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

       (a) Nondiscrimination.--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) An issuer of a medicare supplemental policy shall not 
     deny or condition the issuance or effectiveness of the policy 
     (including the imposition of any exclusion of benefits under 
     the policy based on a pre-existing condition) and shall not 
     discriminate in the pricing of the policy (including the 
     adjustment of premium rates) of an individual on the basis of 
     the genetic information with respect to such individual.
       ``(F) Rule of construction.--Nothing in subparagraph (E) or 
     in subparagraphs (A) or (B) of subsection (x)(2) shall be 
     construed to limit the ability of an issuer of a medicare 
     supplemental policy from, to the extent otherwise permitted 
     under this title--
       ``(i) denying or conditioning the issuance or effectiveness 
     of the policy or increasing the premium for an employer based 
     on the manifestation of a disease or disorder of an 
     individual who is covered under the policy; or
       ``(ii) increasing the premium for any policy issued to an 
     individual based on the manifestation of a disease or 
     disorder of an individual who is covered under the policy (in 
     such case, the manifestation of a disease or disorder in one 
     individual cannot also be used as genetic information about 
     other group members and to further increase the premium for 
     the employer).''.
       (b) Limitations on Genetic Testing and Genetic 
     Information.--
       (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 and Information.--
       ``(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.--Subparagraph (A) shall not be 
     construed to limit the authority of a health care 
     professional who is providing health care services to an 
     individual to request that such individual undergo a genetic 
     test.
       ``(C) Rule of construction regarding payment.--
       ``(i) In general.--Nothing in subparagraph (A) shall be 
     construed to preclude an issuer of a medicare supplemental 
     policy from obtaining and using the results of a genetic test 
     in making a determination regarding payment (as such term is 
     defined for the purposes of applying the regulations 
     promulgated by the Secretary under part C of title XI and 
     section 264 of the Health

[[Page 7505]]

     Insurance Portability and Accountability Act of 1996, as may 
     be revised from time to time) consistent with subsection 
     (s)(2)(E).
       ``(ii) Limitation.--For purposes of clause (i), an issuer 
     of a medicare supplemental policy may request only the 
     minimum amount of information necessary to accomplish the 
     intended purpose.
       ``(D) Research exception.--Notwithstanding subparagraph 
     (A), an issuer of a medicare supplemental policy may request, 
     but not require, that an individual or a family member of 
     such individual undergo a genetic test if each of the 
     following conditions is met:
       ``(i) The request is made pursuant to research that 
     complies with part 46 of title 45, Code of Federal 
     Regulations, or equivalent Federal regulations, and any 
     applicable State or local law or regulations for the 
     protection of human subjects in research.
       ``(ii) The issuer clearly indicates to each individual, or 
     in the case of a minor child, to the legal guardian of such 
     child, to whom the request is made that--

       ``(I) compliance with the request is voluntary; and
       ``(II) non-compliance will have no effect on enrollment 
     status or premium or contribution amounts.

       ``(iii) No genetic information collected or acquired under 
     this subparagraph shall be used for underwriting, 
     determination of eligibility to enroll or maintain enrollment 
     status, premium rating, or the creation, renewal, or 
     replacement of a plan, contract, or coverage for health 
     insurance or health benefits.
       ``(iv) The issuer notifies the Secretary in writing that 
     the issuer is conducting activities pursuant to the exception 
     provided for under this subparagraph, including a description 
     of the activities conducted.
       ``(v) The issuer complies with such other conditions as the 
     Secretary may by regulation require for activities conducted 
     under this subparagraph.
       ``(2) Prohibition on collection of genetic information.--
       ``(A) In general.--An issuer of a medicare supplemental 
     policy shall not request, require, or purchase genetic 
     information for underwriting purposes (as defined in 
     paragraph (3)).
       ``(B) Prohibition on collection of genetic information 
     prior to enrollment.--An issuer of a medicare supplemental 
     policy shall not request, require, or purchase genetic 
     information with respect to any individual prior to such 
     individual's enrollment under the policy in connection with 
     such enrollment.
       ``(C) Incidental collection.--If an issuer of a medicare 
     supplemental policy obtains genetic information incidental to 
     the requesting, requiring, or purchasing of other information 
     concerning any individual, such request, requirement, or 
     purchase shall not be considered a violation of subparagraph 
     (B) if such request, requirement, or purchase is not in 
     violation of subparagraph (A).
       ``(3) Definitions.--In this subsection:
       ``(A) Family member.--The term `family member' means with 
     respect to an individual, any other individual who is a 
     first-degree, second-degree, third-degree, or fourth-degree 
     relative of such individual.
       ``(B) Genetic information.--
       ``(i) In general.--The term `genetic information' means, 
     with respect to any individual, information about--

       ``(I) such individual's genetic tests,
       ``(II) the genetic tests of family members of such 
     individual, and
       ``(III) subject to clause (iv), the manifestation of a 
     disease or disorder in family members of such individual.

       ``(ii) Inclusion of genetic services and participation in 
     genetic research.--Such term includes, with respect to any 
     individual, any request for, or receipt of, genetic services, 
     or participation in clinical research which includes genetic 
     services, by such individual or any family member of such 
     individual.
       ``(iii) Exclusions.--The term `genetic information' shall 
     not include information about the sex or age of any 
     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 (including obtaining, 
     interpreting, or assessing genetic information); or
       ``(iii) genetic education.
       ``(E) Underwriting purposes.--The term `underwriting 
     purposes' means, with respect to a medicare supplemental 
     policy--
       ``(i) rules for, or determination of, eligibility 
     (including enrollment and continued eligibility) for benefits 
     under the policy;
       ``(ii) the computation of premium or contribution amounts 
     under the policy;
       ``(iii) the application of any pre-existing condition 
     exclusion under the policy; and
       ``(iv) other activities related to the creation, renewal, 
     or replacement of a contract of health insurance or health 
     benefits.
       ``(F) 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) Application to genetic information of a fetus or 
     embryo.--Section 1882(x) of such Act, as added by paragraph 
     (1), is further amended by adding at the end the following:
       ``(4) Genetic information of a fetus or embryo.--Any 
     reference in this section to genetic information concerning 
     an individual or family member of an individual shall--
       ``(A) with respect to such an individual or family member 
     of an individual who is a pregnant woman, include genetic 
     information of any fetus carried by such pregnant woman; and
       ``(B) with respect to an individual or family member 
     utilizing an assisted reproductive technology, include 
     genetic information of any embryo legally held by the 
     individual or family member.''.
       (3) 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).''.
       (c) Effective Date.--The amendments made by this section 
     shall apply with respect to an issuer of a medicare 
     supplemental policy for policy years beginning on or after 
     the date that is 1 year after the date of enactment of this 
     Act.
       (d) 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, 2008, 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, 2008, 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, 2008.
       (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 
     2008 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, 2008. 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) In General.--Part C of title XI of the Social Security 
     Act is amended by adding at the end the following new 
     section:


       ``application of hipaa regulations to genetic information

       ``Sec. 1180.  (a) In General.--The Secretary shall revise 
     the HIPAA privacy regulation (as defined in subsection (b)) 
     so it is consistent with the following:
       ``(1) Genetic information shall be treated as health 
     information described in section 1171(4)(B).
       ``(2) The use or disclosure by a covered entity that is a 
     group health plan, health insurance issuer that issues health 
     insurance coverage, or issuer of a medicare supplemental 
     policy of protected health information that is genetic 
     information about an individual for underwriting purposes 
     under the group health plan, health insurance coverage, or 
     medicare supplemental policy shall not be a permitted use or 
     disclosure.
       ``(b) Definitions.--For purposes of this section:
       ``(1) Genetic information; genetic test; family member.--
     The terms `genetic information', `genetic test', and `family 
     member' have the meanings given such terms in section 2791 of 
     the Public Health Service Act (42 U.S.C. 300gg-

[[Page 7506]]

     91), as amended by the Genetic Information Nondiscrimination 
     Act of 2007.
       ``(2) Group health plan; health insurance coverage; 
     medicare supplemental policy.--The terms `group health plan' 
     and `health insurance coverage' have the meanings given such 
     terms under section 2791 of the Public Health Service Act (42 
     U.S.C. 300gg-91), and the term `medicare supplemental policy' 
     has the meaning given such term in section 1882(g).
       ``(3) HIPAA privacy regulation.--The term `HIPAA privacy 
     regulation' means the regulations promulgated by the 
     Secretary under this part and section 264 of the Health 
     Insurance Portability and Accountability Act of 1996 (42 
     U.S.C. 1320d-2 note).
       ``(4) Underwriting purposes.--The term `underwriting 
     purposes' means, with respect to a group health plan, health 
     insurance coverage, or a medicare supplemental policy--
       ``(A) rules for, or determination of, eligibility 
     (including enrollment and continued eligibility) for, or 
     determination of, benefits under the plan, coverage, or 
     policy;
       ``(B) the computation of premium or contribution amounts 
     under the plan, coverage, or policy;
       ``(C) the application of any pre-existing condition 
     exclusion under the plan, coverage, or policy; and
       ``(D) other activities related to the creation, renewal, or 
     replacement of a contract of health insurance or health 
     benefits.
       ``(c) Procedure.--The revisions under subsection (a) shall 
     be made by notice in the Federal Register published not later 
     than 60 days after the date of the enactment of this section 
     and shall be effective upon publication, without opportunity 
     for any prior public comment, but may be revised, consistent 
     with this section, after opportunity for public comment.
       ``(d) Enforcement.--In addition to any other sanctions or 
     remedies that may be available under law, a covered entity 
     that is a group health plan, health insurance issuer, or 
     issuer of a medicare supplemental policy and that violates 
     the HIPAA privacy regulation (as revised under subsection (a) 
     or otherwise) with respect to the use or disclosure of 
     genetic information shall be subject to the penalties 
     described in sections 1176 and 1177 in the same manner and to 
     the same extent that such penalties apply to violations of 
     this part.''.
       (b) Regulations; Effective Date.--
       (1) Regulations.--Not later than 12 months after the date 
     of the enactment of this Act, the Secretary of Health and 
     Human Services shall issue final regulations to carry out the 
     revision required by section 1180(a) of the Social Security 
     Act, as added by subsection (a). The Secretary has the sole 
     authority to promulgate such regulations, but shall 
     promulgate such regulations in consultation with the 
     Secretaries of Labor and the Treasury.
       (2) Effective date.--The amendment made by subsection (a) 
     shall take effect on the date that is 1 year after the date 
     of the enactment of this Act.

     SEC. 106. ASSURING COORDINATION.

       Except as provided in section 105(b)(1), the Secretary of 
     Health and Human Services, the Secretary of Labor, and the 
     Secretary of the Treasury 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.

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) a dependent (as such term is used for purposes of 
     section 701(f)(2) of the Employee Retirement Income Security 
     Act of 1974) of such individual, and
       (B) any other individual who is a first-degree, second-
     degree, third-degree, or fourth-degree relative of such 
     individual or of an individual described in subparagraph (A).
       (4) Genetic information.--
       (A) In general.--The term ``genetic information'' means, 
     with respect to any individual, information about--
       (i) such individual's genetic tests,
       (ii) the genetic tests of family members of such 
     individual, and
       (iii) the manifestation of a disease or disorder in family 
     members of such individual.
       (B) Inclusion of genetic services and participation in 
     genetic research.--Such term includes, with respect to any 
     individual, any request for, or receipt of, genetic services, 
     or participation in clinical research which includes genetic 
     services, by such individual or any family member of such 
     individual.
       (C) Exclusions.--The term ``genetic information'' shall not 
     include information about the sex or age of any 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 (including obtaining, interpreting, 
     or assessing genetic information); or
       (C) genetic education.
       (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 an 
     analysis of proteins or metabolites that does not detect 
     genotypes, mutations, or chromosomal changes.

     SEC. 202. EMPLOYER PRACTICES.

       (a) Discrimination Based on 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
       (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.
       (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 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 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;
       (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--

[[Page 7507]]

       (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; or
       (6) where the employer conducts DNA analysis for law 
     enforcement purposes as a forensic laboratory, and such 
     analysis is included in the Combined DNA Index System 
     pursuant to section 210304 of the Violent Crime Control and 
     Law Enforcement Act of 1994 (42 U.S.C. 14132), and requests 
     or requires genetic information of such employer's employees, 
     but only to the extent that such genetic information is used 
     for analysis of DNA identification markers for quality 
     control to detect sample contamination.
       (c) Preservation of Protections.--In the case of 
     information to which any of paragraphs (1) through (6) 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) Discrimination Based on 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;
       (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
       (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 
     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 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), (2), or (3) of subsection (a) or 
     treated or disclosed in a manner that violates section 206.

     SEC. 204. LABOR ORGANIZATION PRACTICES.

       (a) Discrimination Based on 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;
       (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
       (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 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 
     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), (2), or (3) of subsection (a) or 
     treated or disclosed in a manner that violates section 206.

     SEC. 205. TRAINING PROGRAMS.

       (a) Discrimination Based on Genetic Information.--It shall 
     be an unlawful employment

[[Page 7508]]

     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 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
       (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 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 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 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;
       (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; or
       (6) where the employer conducts DNA analysis for law 
     enforcement purposes as a forensic laboratory, and such 
     analysis is included in the Combined DNA Index System 
     pursuant to section 210304 of the Violent Crime Control and 
     Law Enforcement Act of 1994 (42 U.S.C. 14132), and requests 
     or requires genetic information of such employer's 
     apprentices or trainees, but only to the extent that such 
     genetic information is used for analysis of DNA 
     identification markers for quality control to detect sample 
     contamination.
       (c) Preservation of Protections.--In the case of 
     information to which any of paragraphs (1) through (6) of 
     subsection (b) applies, such information may not be used in 
     violation of paragraph (1), (2), or (3) 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, 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. An employer, 
     employment agency, labor organization, or joint labor-
     management committee shall be considered to be in compliance 
     with the maintenance of information requirements of this 
     subsection with respect to genetic information subject to 
     this subsection that is maintained with and treated as a 
     confidential medical record under section 102(d)(3)(B) of the 
     Americans With Disabilities Act (42 U.S.C. 12112(d)(3)(B)).
       (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 except--
       (1) to the employee or member of a labor organization (or 
     family member if the family member is receiving the genetic 
     services) at the written 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 inform the employee or 
     member of the court order and any genetic information that 
     was disclosed pursuant to such order;
       (4) to government officials who are investigating 
     compliance with this title if the information is relevant to 
     the investigation;
       (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; or
       (6) to a Federal, State, or local public health agency only 
     with regard to information that is described in section 
     201(4)(A)(iii) and that concerns a contagious disease that 
     presents an imminent hazard of death or life-threatening 
     illness, and that the employee whose family member or family 
     members is or are the subject of a disclosure under this 
     paragraph is notified of such disclosure.
       (c) Relationship to HIPAA Regulations.--With respect to 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), this title does not prohibit a covered 
     entity under such regulations from any use or disclosure of 
     health information that is authorized for the covered entity 
     under such regulations. The previous sentence does not affect 
     the authority of such Secretary to modify such regulations.

     SEC. 207. REMEDIES AND ENFORCEMENT.

       (a) Employees Covered by Title VII of the Civil Rights Act 
     of 1964.--
       (1) In general.--The powers, procedures, and remedies 
     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, procedures, and remedies 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 of the United States (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 of the United States 
     (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 of the United States).
       (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

[[Page 7509]]

     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 of the United States (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 of the United States 
     (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 of the United 
     States).
       (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 of the United States (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 of the United States 
     (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 of the United States).
       (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 of the United States (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 of the United States 
     (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 of the United States).
       (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 of the United States (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 of the United States 
     (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 of the United States).
       (f) Prohibition Against Retaliation.--No person shall 
     discriminate against any individual because such individual 
     has opposed any act or practice made unlawful by this title 
     or because such individual made a charge, testified, 
     assisted, or participated in any manner in an investigation, 
     proceeding, or hearing under this title. The remedies and 
     procedures otherwise provided for under this section shall be 
     available to aggrieved individuals with respect to violations 
     of this subsection.
       (g) 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-2(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 Labor of the House of 
     Representatives; and
       (H) 1 member shall be appointed by the ranking minority 
     member of the Committee on Education and Labor 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.

       (a) In General.--Nothing in this title shall be construed 
     to--
       (1) 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, including the 
     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

[[Page 7510]]

       (B) provide for enforcement of, or penalties for violation 
     of, any requirement or prohibition applicable to any 
     employer, employment agency, labor organization, or joint 
     labor-management committee subject to enforcement for a 
     violation under--
       (i) the amendments made by title I of this Act;
       (ii)(I) subsection (a) of section 701 of the Employee 
     Retirement Income Security Act of 1974 as such section 
     applies with respect to genetic information pursuant to 
     subsection (b)(1)(B) of such section;
       (II) section 702(a)(1)(F) of such Act; or
       (III) section 702(b)(1) of such Act as such section applies 
     with respect to genetic information as a health status-
     related factor;
       (iii)(I) subsection (a) of section 2701 of the Public 
     Health Service Act as such section applies with respect to 
     genetic information pursuant to subsection (b)(1)(B) of such 
     section;
       (II) section 2702(a)(1)(F) of such Act; or
       (III) section 2702(b)(1) of such Act as such section 
     applies with respect to genetic information as a health 
     status-related factor; or
       (iv)(I) subsection (a) of section 9801 of the Internal 
     Revenue Code of 1986 as such section applies with respect to 
     genetic information pursuant to subsection (b)(1)(B) of such 
     section;
       (II) section 9802(a)(1)(F) of such Act; or
       (III) section 9802(b)(1) of such Act as such section 
     applies with respect to genetic information as a health 
     status-related factor;
       (3) apply to the Armed Forces Repository of Specimen 
     Samples for the Identification of Remains;
       (4) limit or expand the protections, rights, or obligations 
     of employees or employers under applicable workers' 
     compensation laws;
       (5) 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);
       (6) 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; or
       (7) require any specific benefit for an employee or member 
     or a family member of an employee or member under any group 
     health plan or health insurance issuer offering group health 
     insurance coverage in connection with a group health plan.
       (b) Genetic Information of a Fetus or Embryo.--Any 
     reference in this title to genetic information concerning an 
     individual or family member of an individual shall--
       (1) with respect to such an individual or family member of 
     an individual who is a pregnant woman, include genetic 
     information of any fetus carried by such pregnant woman; and
       (2) with respect to an individual or family member 
     utilizing an assisted reproductive technology, include 
     genetic information of any embryo legally held by the 
     individual or family member.
       (c) Relation to Authorities Under Title I.--With respect to 
     a group health plan, or a health insurance issuer offering 
     group health insurance coverage in connection with a group 
     health plan, this title does not prohibit any activity of 
     such plan or issuer that is authorized for the plan or issuer 
     under any provision of law referred to in clauses (i) through 
     (iv) of subsection (a)(2)(B).

     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 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 PROVISIONS

     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.

     SEC. 302. CHILD LABOR PROTECTIONS.

       (a) In General.--Section 16(e) of the Fair Labor Standards 
     Act of 1938 (29 U.S.C. 216(e)) is amended to read as follows:
       ``(e)(1)(A) Any person who violates the provisions of 
     sections 12 or 13(c), relating to child labor, or any 
     regulation issued pursuant to such sections, shall be subject 
     to a civil penalty not to exceed--
       ``(i) $11,000 for each employee who was the subject of such 
     a violation; or
       ``(ii) $50,000 with regard to each such violation that 
     causes the death or serious injury of any employee under the 
     age of 18 years, which penalty may be doubled where the 
     violation is a repeated or willful violation.
       ``(B) For purposes of subparagraph (A), the term `serious 
     injury' means--
       ``(i) permanent loss or substantial impairment of one of 
     the senses (sight, hearing, taste, smell, tactile sensation);
       ``(ii) permanent loss or substantial impairment of the 
     function of a bodily member, organ, or mental faculty, 
     including the loss of all or part of an arm, leg, foot, hand 
     or other body part; or
       ``(iii) permanent paralysis or substantial impairment that 
     causes loss of movement or mobility of an arm, leg, foot, 
     hand or other body part.
       ``(2) Any person who repeatedly or willfully violates 
     section 6 or 7, relating to wages, shall be subject to a 
     civil penalty not to exceed $1,100 for each such violation.
       ``(3) In determining the amount of any penalty under this 
     subsection, the appropriateness of such penalty to the size 
     of the business of the person charged and the gravity of the 
     violation shall be considered. The amount of any penalty 
     under this subsection, when finally determined, may be--
       ``(A) deducted from any sums owing by the United States to 
     the person charged;
       ``(B) recovered in a civil action brought by the Secretary 
     in any court of competent jurisdiction, in which litigation 
     the Secretary shall be represented by the Solicitor of Labor; 
     or
       ``(C) ordered by the court, in an action brought for a 
     violation of section 15(a)(4) or a repeated or willful 
     violation of section 15(a)(2), to be paid to the Secretary.
       ``(4) Any administrative determination by the Secretary of 
     the amount of any penalty under this subsection shall be 
     final, unless within 15 days after receipt of notice thereof 
     by certified mail the person charged with the violation takes 
     exception to the determination that the violations for which 
     the penalty is imposed occurred, in which event final 
     determination of the penalty shall be made in an 
     administrative proceeding after opportunity for hearing in 
     accordance with section 554 of title 5, United States Code, 
     and regulations to be promulgated by the Secretary.
       ``(5) Except for civil penalties collected for violations 
     of section 12, sums collected as penalties pursuant to this 
     section shall be applied toward reimbursement of the costs of 
     determining the violations and assessing and collecting such 
     penalties, in accordance with the provision of section 2 of 
     the Act entitled `An Act to authorize the Department of Labor 
     to make special statistical studies upon payment of the cost 
     thereof and for other purposes' (29 U.S.C. 9a). Civil 
     penalties collected for violations of section 12 shall be 
     deposited in the general fund of the Treasury.''.
       (b) Effective Date.--The amendments made by this section 
     shall take effect on the date of the enactment of this Act.


           Motion Offered by Mr. George Miller of California

  Mr. GEORGE MILLER of California. Madam Speaker, I have a motion at 
the desk.
  The SPEAKER pro tempore. The Clerk will designate the motion.
  The text of the motion is as follows:

       Motion offered by Mr. George Miller of California:
       Mr. George Miller of California moves that the House concur 
     in the Senate amendment to H.R. 493.

  The SPEAKER pro tempore. Pursuant to House Resolution 1156, the 
motion shall be debatable for 1 hour, with 20 minutes equally divided 
and controlled by the chairman and ranking minority member of the 
Committee on Education and Labor, 20 minutes equally divided and 
controlled by the chairman and ranking minority member of the Committee 
on Energy and Commerce, and 20 minutes equally divided and controlled 
by the chairman and ranking minority member of the Committee on Ways 
and Means.
  The gentleman from California (Mr. George Miller), the gentleman from 
California (Mr. McKeon), the gentleman from Michigan (Mr. Dingell), the 
gentleman from Michigan (Mr. Upton), the gentleman from California (Mr. 
Stark), and the gentleman from Michigan (Mr. Camp) each will control 10 
minutes.
  The Chair recognizes the gentleman from California (Mr. George 
Miller).
  Mr. GEORGE MILLER of California. Madam Speaker, I ask unanimous 
consent to yield my 10 minutes to the Chair of the Commerce Committee, 
Mr. Dingell.
  The SPEAKER pro tempore. Is there objection to the request of the 
gentleman from California?
  There was no objection.
  Mr. DINGELL. Madam Speaker, I yield myself 2 minutes.
  Madam Speaker, today we consider H.R. 493, the Genetic Information 
Nondiscrimination Act. I first wish to congratulate Representative 
Slaughter for her leadership on this bill on which she has worked for 
better than 13 years. It has been a privilege to join

[[Page 7511]]

her in that work, and I am delighted that it has brought us to today's 
vote.
  Recent advances in research have made it possible to identify the 
genetic basis for human diseases. These breakthroughs, magnificent as 
they are, have opened the door to early detection and treatment of 
diseases and prevention strategies geared to a person's genetic makeup. 
At the same time, this information can also be used to unfairly 
discriminate against or stigmatize individuals when it comes to 
insurance and employment.
  To protect individuals from insurance discrimination, H.R. 493 would 
prohibit health insurers, both in group and individual markets, from 
canceling, denying, refusing to renew or changing the terms or premiums 
of coverage based solely on genetic predispositions towards specific 
diseases.
  Additionally, in order to protect individuals from employment 
discrimination, this bill would make it unlawful for employers or other 
hiring entities to use an individual's genetic information regarding 
hiring, firing, promotion or other terms and conditions of employment. 
The legislation requires that genetic information be treated as a part 
of the individual's confidential medical record and that employers 
maintain separate forms or files for any genetic information that they 
may obtain.
  The House of Representatives passed this legislation a year ago with 
a strong bipartisan vote of 420-3. Unfortunately, the measure has been 
held up in the Senate, as usual. With these concerns now resolved, we 
are close to providing Americans the ability to undergo genetic testing 
that may indicate early treatment and prevention of diseases such as 
cancer, heart disease, diabetes and Alzheimer's, without fear of losing 
their health insurance or affecting adversely the conditions of their 
employment.
  The SPEAKER pro tempore. The time of the gentleman has expired.
  Mr. DINGELL. I yield myself 1 additional minute.
  The bill currently before us includes clarifying language intended to 
ease the concerns of some of my colleagues and is identical to the 
version passed by the Senate last week. These changes include a 
firewall between title I and II of the bill. The modifications clarify 
that employers are not liable for health insurance violations under 
civil rights laws unless the employer has separately violated a 
provision of title II governing employers.
  The changes also make it clear that while individuals are protected 
from discrimination based on genetic predisposition, the authority of 
insurance companies to base coverage and pricing on the actual presence 
of a disease is not affected.
  These changes broaden the base of support for the bill and allow us 
to bring it to the House floor with the expectation that it will be 
signed into law by the President.
  I thank my colleagues on both sides of the aisle for their hard work 
on this bill and for coming together to make this legislation a 
reality.
  Madam Speaker, I ask unanimous consent to yield back the remainder of 
my time to my distinguished friend from California, the Honorable 
George Miller, chairman of the Education and Labor Committee, and that 
he be permitted to yield that time in accordance with his whims.
  The SPEAKER pro tempore. Is there objection to the request of the 
gentleman from Michigan?
  There was no objection.
  Mr. McKEON. Madam Speaker, I rise in support of this legislation, and 
yield myself such time as I may consume.
  Madam Speaker, while it is not a perfect bill, I do believe it 
contains a number of important improvements over prior versions of this 
legislation, including that which I supported a little over a year ago 
on the House floor. More importantly, it marks a commitment by this 
Congress to ensure that the laws of the United States protect American 
workers and health care consumers from discrimination on the basis of 
their genetic makeup. Because that goal is so critical, I will vote for 
this bill today, and urge my colleagues to do likewise.
  Before I turn to the substance of my remarks, I would like to commend 
my colleague and fellow Member on the Committee on Education and Labor, 
Representative Judy Biggert, for her years of work and dedication on 
this important issue. She has been persistent and effective on so many 
issues that have come before this committee and this Congress and she 
should be commended for adding this important bill to her list of 
legislative accomplishments. I also want to commend the gentlewoman 
from New York, the distinguished Chair of the Rules Committee, Ms. 
Slaughter, who has been Mrs. Biggert's partner in this effort.
  As I noted during our committee's consideration of this bill last 
year, I believe the title of the legislation before us, the Genetic 
Information Nondiscrimination Act, embodies a proposition that all 
Members of our committee and indeed our Congress would endorse. Simply 
put, no employee should face discrimination on the basis of his or her 
genetic makeup or on any other characteristic other than his or her 
ability to do the job. Similarly, no employee should risk his or her 
health insurance status simply because of the possibility that they 
might some day develop an illness.
  This bill was drafted with those fundamental principles in mind, and 
I believe that through the legislative process, we have taken steps 
toward ensuring that the bill we send the President today ensures that 
those principles are fulfilled, while minimizing the potential for 
unintended consequences.
  I would take this opportunity to point out a number of improvements 
in the bill that I think merit attention.

                              {time}  1130

  Foremost, I am pleased that the bill we will send today to the White 
House for President Bush to sign embodies the same logic as a past 
executive order issued by President Clinton to ensure that this 
legislation would not inadvertently serve as a broad new Federal 
mandate requiring all insurance plans and employers to cover all 
treatments related to genetic-related conditions. That is exactly the 
type of unintended consequences we were seeking to avoid, and I am 
pleased we were able to work this out.
  Second, I would highlight a provision in the legislation that ensures 
that employers who are currently subject to a number of confidentiality 
and recordkeeping requirements under law are not burdened by yet 
another redundant set of paperwork requirements. The bill before us 
today provides that, with respect to genetic information, if an 
employer maintains employee records and treats them as it does 
confidential medical records under the Americans With Disabilities Act, 
it is in compliance with this new genetics law.
  Third, I applaud a significant improvement in the bill; namely, its 
extension of genetic nondiscrimination protection to all Americans.
  One of the issues raised during our committee's consideration of the 
bill was concern that the bill's protections did not adequately extend 
to cover children in utero or at early stages of development, or in 
connection with in vitro fertilization and other technologies. I am 
very pleased that the final bill before us addresses this issue to the 
satisfaction of all Members on both sides of the aisle who worked in 
good faith to ensure the broadest protections possible.
  The Senate amendment we consider today contains a number of other 
improvements over prior versions, including important provisions 
relating to those who participate in genetic clinical testing, 
providing for use of genetic information in matters of public health 
safety, and ensuring the most focused scheme of remedies possible. 
These changes represent issues we were able to work through over the 
past year and which demonstrate how the legislative process is meant to 
work. We were presented with well-intentioned legislation, heard 
meaningful testimony on it and its potential impact on employers and 
employees alike, raised and debated legitimate concerns, and worked 
through to bridge the gap between where we began and where we stand 
today.
  I thank the staff from both sides of the aisle and in both chambers 
for making this a reality.

[[Page 7512]]

  Before concluding my remarks, I would be remiss if I did not note for 
the record that I am still concerned that this bill is in some respects 
potentially overbroad. While we all agree with the goal of 
nondiscrimination I discussed earlier, the facts remain that we are 
poised today to adopt a sweeping new expansion to Federal Civil Rights 
scheme, the most expansive change since the adoption of the Americans 
With Disabilities Act of 1990.
  As we send this bill to the President to sign into law, I would urge 
my colleagues to join me in remaining vigilant in the months to come in 
monitoring the administration of this new law to ensure that it 
addresses the problems it is intended to correct, and does not simply 
become yet another bureaucratic burden on employers or a lottery ticket 
for plaintiffs' lawyers.
  In that same light, as courts and administrative agencies interpret 
and enforce these laws, I would urge them to heed the intent of 
Congress; namely, that this bill's most egregious penalties must be 
reserved for the most egregious violations of the law. If experience 
under this new law shows that this is not the case, I trust my 
colleagues will join me in supporting swift action to correct any 
mistakes we have made.
  With that, I will conclude my comments. As I noted at the outset of 
my remarks, our actions today will ensure that the law of the United 
States protects American workers and health care consumers from 
discrimination on the basis of their genetic makeup, a goal I think is 
shared by every Member of this House. I urge my colleagues to support 
this legislation.
  I yield the balance of my time to the gentlelady from Illinois (Mrs. 
Biggert) and ask unanimous consent that she be allowed to control the 
remainder of the time.
  The SPEAKER pro tempore. Is there objection to the request of the 
gentleman from California?
  There was no objection.
  Mr. GEORGE MILLER of California. I yield 3 minutes to the gentleman 
from California, the subcommittee Chair of Ways and Means, Mr. Stark.
  Mr. STARK. Madam Speaker, I would add my congratulations and praise 
to the gentlewoman from New York (Ms. Slaughter) and the gentlewoman 
from Illinois (Mrs. Biggert) for the work that they have done to bring 
this bill finally to the floor for passage. It is a bill that has 
languished for over a decade. It is good to see that times have 
changed. We moved expeditiously last year through three committees and 
on to the floor, and it will leave this chamber today and head to the 
White House for the President's signature. It is a small but long 
overdue step toward approving our health care system and preventing 
employment discrimination, and ensures that our laws governing 
patients' rights are as current as the latest medical technology.
  Simply stated, the legislation provides peace of mind, and encourages 
people to take advantage of the miracles of modern medicine without 
fear of reprisal or consequences at work or in health care or in 
qualifying for insurance.
  GINA, as it is known, prohibits insurers and employees from using the 
genetic information to discriminate. Thus, a woman who has decided to 
find out whether she carries the breast cancer gene need not worry 
about losing her job or health insurance merely because she sought the 
test. Enactment of this law is critical to protect patients and is 
needed to encourage people to use robust genetic research and to 
encourage more research. Additional research will help us determine 
when we men will get colon cancer or prostate cancer, and not be afraid 
to go and receive those tests for fear of being discriminated against.
  This legislation enjoys broad bipartisan support of more than 500 
groups representing patients, employees, physicians, providers, and 
others who value the protection that this legislation provides. I urge 
strong support for this bill.
  I ask unanimous consent that I be able to yield the balance of our 
time for the Ways and Means Committee to the gentleman from California 
(Mr. George Miller), and that he control the balance of our time.
  The SPEAKER pro tempore. Is there objection to the request of the 
gentleman from California?
  There was no objection.
  Mr. UPTON. I yield myself such time as I may consume.
  Madam Speaker, I rise in strong support of this legislation, and want 
to commend all those that were instrumental in getting its passage to 
the floor, particularly my good friend, Judy Biggert from Illinois.
  We have made some wonderful advances in health care research over the 
number of years. I can remember helping to lead the charge with my 
colleague, Mr. Waxman, on a bipartisan bill to double the money for the 
National Institutes of Health back in the nineties, and we had a 
similar effort in the Senate between John McCain, the Republican leader 
there of that same issue, and Paul Wellstone, a dear colleague who is 
no longer with us. But, together we passed that bipartisan legislation. 
And with those advances, of course we have to look at other things that 
are pertinent, too, and that is why this Genetic Information 
Nondiscrimination Act is so important.
  I remember traveling to the University of Michigan and meeting with 
one of the researchers there that in fact had received an NIH grant; 
and he just weeks before, because of that grant, had identified the 
breast cancer gene that strikes one in eight women across America. He 
was excited. And it wouldn't have happened without that NIH money; but 
with that discovery, it is clear that we have to in fact protect that 
genetic information from being discriminated against by who knows who.
  And I would say that, thanks to my colleagues, Mr. Deal, the ranking 
member on the Health Subcommittee who is in a hearing right now, and 
Joe Barton, the ranking member, that we have all made advances and 
worked closely with Chairman Dingell to mitigate what we believed were 
some significant problems with the legislation as it was introduced.
  Among other items, we wanted to make sure that any use of information 
by certain entities regulated under the Health Insurance Portability 
and Accountability Act not also be regulated by the Equal Employment 
Opportunity Commission under title II of the bill. Such dual regulation 
of the use of information would have been highly disruptive and 
certainly inappropriate.
  We also made numerous clarifications to make sure that the new 
regulatory scheme did not disrupt reasonable and needed activities by 
health plans to improve health care, coordinate benefits, process 
benefits, or educate beneficiaries. It is important for the Congress to 
be mindful that we are not writing on a blank slate each and every time 
that we launch one of these new regulatory and liability schemes. And I 
certainly join many here that are satisfied that these important 
improvements made by the Committee on Energy and Commerce are preserved 
in the bill. I want to commend the bipartisan and bicameral discussions 
that led to this compromise, and I would urge that we all support it 
when a roll call vote comes.
  At this point, I would yield the balance of our time that our 
committee controls to my friend from Illinois (Mrs. Biggert).
  The SPEAKER pro tempore. Without objection, the gentlewoman from 
Illinois will control the time.
  There was no objection.
  Mr. GEORGE MILLER of California. I yield 3 minutes to the gentlewoman 
from Pennsylvania, Ms. Allyson Schwartz.
  Ms. SCHWARTZ. Today, Americans buy health coverage believing they are 
doing the right thing and expecting that they have secured access for 
needed health services for themselves and their family. But, 
unfortunately, this is simply not always true. Individuals, regardless 
of their age or circumstances, are denied health coverage every day due 
to the evidence or existence of preexisting conditions. This could be 
anything from asthma to heart disease, and it could affect anyone from 
our Nation's children to our grandparents to each of us.

[[Page 7513]]

  For more than 10 years, the Health Insurance Portability and 
Accountability Act has provided protection for some individuals and 
families to ensure this information is not used to deny health coverage 
by either an employer or an insurer; but gaps still remain.
  With the evolution of biomedical research, our Nation's scientists 
have discovered opportunities to use genetic information to prevent, 
diagnose, and more effectively treat some of the most devastating 
diseases of our lifetime. I am honored to represent some of these most 
brilliant researchers and scientists in Southeastern Pennsylvania.
  In addition to the great medical potential they are exploring, 
genetic information also has the potential to reduce health care costs 
with better prevention and disease management. We must ensure that 
these new revelations do not come with a price: Discrimination by 
employers, insurers, schools, or others based on genetic information of 
those who are not even sick but are simply identified as being 
predisposed to a specific disease. If we do not reassure our fellow 
Americans that they are safe in taking full advantage of the 
opportunities provided by exploring the genetic information, then these 
advances in biomedical research could well be for naught.
  For this reason, I applaud my colleague, Representative Slaughter, 
for introducing the Genetic Information Nondiscrimination Act and for 
being its champion for so many years. I am proud to support its passage 
today. It is important for all Americans and their access to health 
coverage.
  Mr. CAMP of Michigan. Madam Speaker, I yield myself such time as I 
may consume.
  As many of my colleagues have stated, passing this bill is an 
important step forward in protecting the health of every American. We 
should be proud of our efforts to work on a bipartisan basis to craft 
this legislation, and I want to recognize the efforts of the 
gentlewoman from Illinois, Congresswoman Biggert. This bill should be a 
model for our efforts to reform health care.
  We all agree that individuals should not be discriminated against on 
the basis of their genetic information. Employers and insurers should 
not be allowed to use genetic markers to deny employment or health 
coverage simply because they possess a particular gene. But genetic 
information can also be used to help patients. Health plans have an 
ability to interact with both patients and providers to highlight 
recommended tests and courses of action.
  For example, a person that has a gene for a certain type of cancer 
would be recommended to receive more frequent cancer screenings. 
Knowing this, the health insurer would know to approve coverage for 
these additional screenings because they would be at a higher risk of 
developing that type of cancer.
  We all preach about transforming medicine to provide more 
preventative care. Now, we are finally at a point where medical 
technology can be effectively used to deliver the preventative care 
that we envision.
  I am certain that the use of genetic information is just the tip of 
the iceberg. As medicine develops, so must our laws and regulations; 
yet, we must be careful not to stifle these promising medical advances. 
I am confident that we can both protect patient privacy and improve the 
delivery of health care as this legislation does.
  With that, I yield the remaining time from my committee to the 
gentlewoman from Illinois to control.
  The SPEAKER pro tempore. Without objection, the gentlewoman from 
Illinois will control the time.
  There was no objection.
  Mr. GEORGE MILLER of California. I yield 2 minutes to the gentlewoman 
from New Hampshire (Ms. Shea-Porter), a member of the committee.
  Ms. SHEA-PORTER. Madam Speaker, I rise today in support of H.R. 493, 
the Genetic Information Nondiscrimination Act.
  As a member of the Education and Labor Committee, I knew that we had 
served the American people well when the committee passed this bill and 
then the House passed it almost unanimously in April 2007. Now, a year 
later, we are on the verge of sending this important legislation to the 
President with overwhelming bipartisan support in both Chambers.

                              {time}  1145

  Science and medicine have made great strides in recent years, 
especially with regard to genetic mapping and research. The potential 
for finding the answers we desperately seek for so many diseases and 
afflictions is greatly increased by the research being done. However, 
in order for these efforts to be successful, the public must be assured 
that these new discoveries will help and not hurt them.
  Science will soon be able to tell us about many more diseases that 
individuals are genetically predisposed to develop. That information 
should be used only for the public good. It must not be used by 
companies to pick and choose who gets insurance or who gets 
discriminated against. They should not be allowed to charge higher 
insurance premiums because of somebody's individual genetic makeup.
  This critical piece of legislation will protect individuals from 
discrimination. This is an important step that Congress is taking 
today, and I am very happy that we are doing this in a unified spirit. 
I commend Congresswomen Slaughter and Biggert for their efforts here. 
And I would also like to thank Chairman Miller and my colleagues on the 
Education and Labor Committee for their work on this and so many other 
important issues. I urge my colleagues to vote ``yes.''
  Mrs. BIGGERT. Madam Speaker, I yield myself such time as I may 
consume.
  Madam Speaker, I rise today in strong support of H.R. 493, the 
Genetic Information Nondiscrimination Act, which will prohibit health 
insurers and employers from discriminating on the basis of genetic 
information.
  As many of my colleagues are aware, this legislation has been around 
for quite some time. I have been working on for it more than 7 years, 
and Congresswoman Slaughter has been working on it for more than 12 
years. It's been a long road, and there have been many times I thought 
this day would never come; but it is here.
  Over this period of time, I have heard stories from my constituents 
and other individuals across the country about how genetic information 
was affecting their lives. Quite simply, they are stories of how our 
laws have failed to keep pace with medical science.
  A breast cancer survivor in Chicago told me that even though her 
doctor recommended she undergo a genetic test to see if she had a 60 
percent chance of developing ovarian cancer, which was quite common in 
the type of breast cancer that they had, she refused the test. She said 
I can't, I will lose my job.
  It isn't that she didn't want to know; quite the opposite. She 
desperately wanted to know, but she feared if she had an adverse result 
from the test, she would lose her job. She is not alone; studies show 
that 85 percent of Americans fear employers will use genetic 
information to discriminate.
  And then there is the woman from Missouri whose sister had suffered 
from cancer was cautioned by her doctor that undergoing genetic testing 
would cause her to lose her health insurance. She too chose not to 
undergo a genetic test. She is not alone; studies show that 84 percent 
of Americans express concern that health insurance companies would deny 
coverage based on genetic information.
  And then there is the man with a family history of PKD, decided to 
take a genetic test but chose to use an alias and pay cash rather than 
bill his insurance just to keep the test out of his medical file. And 
he also is not alone; 26 percent of genetic counselors themselves admit 
that they would use an alias and 68 percent said they would pay for the 
test out of their pocket to protect themselves from discrimination.
  The dean of a prominent university in Massachusetts told me that the 
fear of genetic discrimination was hindering clinical trials, slowing 
the development of life-saving techniques. At

[[Page 7514]]

NIH, fear of genetic discrimination is the most common reason people 
cite for not participating in clinical trials on breast and colon 
cancers.
  Madam Speaker, I have heard these stories over and over again from 
individuals wanting to know their genetic risk of developing diseases 
as far ranging as cancer, heart disease, diabetes, Parkinson's, 
Alzheimer's, Tay-Sachs, and PKD.
  The sad fact is that these individuals are avoiding genetic tests 
that would empower them with the information that could save their 
lives.
  So I want to let all people know that when the House passes GINA 
today, we will be just one step away, and that would be the signing by 
the President, from realizing the medical benefits of genetic testing. 
One step away from ensuring that people will be able to take a genetic 
test without risking their jobs and health insurance. One step away 
from ensuring that patients can stop using aliases and paying out of 
pocket to keep their genetic tests secret. One step away from ensuring 
that individuals will be able to participate in genetic clinical trials 
without fear of discrimination.
  And the last step is the President's signature, and I am happy to say 
that he is expected to sign this bill.
  Madam Speaker, it is clear to me that by passing GINA and freeing 
people from fear of genetic discrimination, we can unlock the 
tremendous life-saving and cost-saving potential of genetic research. 
More Americans will participate in genetic clinical trials, and more 
Americans will use these technologies to improve their health.
  And with these improvements comes the prospect of dramatically 
reducing the chronic care costs that cripple our health care system. We 
now have more than 500 different health advocacy and business 
organizations supporting this bill. Recent surveys shows that 93 
percent of Americans believe that employers and insurers should not be 
able to use genetic information to discriminate.
  With numbers like these, it should be no surprise that the House 
passed this bill last April 420-3, and the Senate passed it last week 
95-0, and the President is expected to sign this measure into law.
  Madam Speaker, I reserve the balance of my time.
  Mr. GEORGE MILLER of California. Madam Speaker, I yield 3 minutes to 
the gentlewoman from California (Ms. Woolsey), a subcommittee Chair in 
the Committee on Education and Labor.
  Ms. WOOLSEY. Madam Speaker, we have been waiting for this day for 
over a decade. Finally we are here, and we are about to pass H.R. 493, 
the Genetic Information Nondiscrimination Act that we called GINA which 
was first introduced by Representative Slaughter in 1995 and which was 
approved by the Senate last week.
  It has been a long road, but the main sponsors of the legislation, 
Representative Slaughter and Representative Biggert have persevered, 
and I congratulate them both.
  I am proud to be an original cosponsor of GINA which will prohibit 
employers from using genetic information to discriminate against 
workers, and will also prohibit health insurers from using such 
information to raise premiums or to deny coverage.
  We know that many States, including my home State of California, 
prohibits employers and health insurers from discriminating on the 
basis of genetic information, and that is good, but these laws vary 
widely.
  So it is important for the Federal Government, as it has with title 
VII and the Americans with Disabilities Act, ADA, to step forward to 
establish a national policy, making it clear that discriminating 
against workers and others based on genetic information is 
unacceptable.
  Madam Speaker, this bill also contains the provisions of H.R. 2637, 
the Child Labor Protection Act of 2007. It was a bill I introduced last 
year that passed the House in June of 2007.
  The provisions in H.R. 2637 will increase civil penalties from 
$11,000 to $50,000 for violations that cause the death or serious 
injury of a child worker, as if there is any penalty high enough to 
make up for a child.
  The legislation, though, provides that a penalty can be doubled when 
the violation causing death or injury is repeated or willful. The child 
labor bill was a narrowly drafted bipartisan effort. It is a good 
foundation for future action on child labor laws.
  So I am delighted that part of GINA includes my legislation, 
legislation that can be used to offset the costs of GINA.
  We are living, Madam Speaker, in an exciting age. We have just begun 
to tap the potential of genetic testing. This bill adds the protection 
that is needed so this research can go forward and be used wisely.
  Mrs. BIGGERT. I reserve the balance of my time.
  Mr. GEORGE MILLER of California. Madam Speaker, I yield 3 minutes to 
the gentleman from New Jersey (Mr. Andrews).
  Mr. ANDREWS. I thank the chairman for yielding, and I rise in strong 
support of this legislation. I would like to thank all of those 
involved in bringing us to this point, Ms. Slaughter, Mrs. Biggert, and 
I especially want to mention Mark Zuckerman, Brian Kennedy, Michelle 
Varnhagen, and Carlos Fenwick from our staff who worked so hard on 
making this a reality. Thank you very much for your good work.
  This is about as basic as it gets. It is a fundamental principle in 
this country that when you walk in and apply for a job, you shouldn't 
be judged on the color of your skin, your gender, your sexual 
orientation, your ethnicity, your age, or your religion. To that today 
we are adding the notion of your genetic background.
  I think most Americans would understand as a matter of simple common 
sense that if your grandmother had breast cancer, it should be 
irrelevant as to whether you get a job or not. If your grandfather was 
diabetic, it should be irrelevant as to whether you get health 
insurance or not, and under what terms.
  This simple, powerful, commonsense idea that is embodied in this 
legislation will become embodied in the law very shortly because of the 
good work that is being done here.
  Beyond the basic fairness, the basic principle that we should be 
judged by our abilities and not by our characteristics, is the point 
that we discussed earlier during the rule debate. Many Americans 
justifiably fear that if they share their genetic information with 
researchers, that information may wind up hurting them. It may wind up 
depriving them of a job, depriving them of health insurance, or raising 
their health insurance premiums.
  The very significant protections that are in this bill, soon to 
become law, will provide a level of assurance for Americans that when 
we participate in genetic research, as I have by donating my DNA sample 
to the Coriell Institute in Camden, New Jersey, that we will be 
protected against misuse of that information.
  This unlocks an exhilarating potential for finding the cure for all 
kinds of diseases and afflictions that have hurt so many people for so 
long. So I believe this is a singular achievement. It is an honor to be 
a part of it, and I know that generations of Americans will benefit not 
only from the simple fairness that this law will impose in the 
workplace, but for the great potential that this law will unlock for 
the investors and inventors and researchers of this country.
  No American should ever be denied a job or health insurance or a 
promotion because of their genetic characteristics. Because of our 
actions today, this will become the law.
  I thank the chairman for his leadership. I thank Mrs. Biggert for her 
leadership and Chairwoman Slaughter as well, and urge a ``yes'' vote in 
favor of this legislation.
  Mr. GEORGE MILLER of California. I yield 2 minutes to the gentleman 
from New York (Mr. Engel), a member of the Energy and Commerce 
Committee.
  Mr. ENGEL. Madam Speaker, as a member of the Energy and Commerce 
Committee and a member of the Health Subcommittee, I thank my friend, 
the distinguished chairman of the Education and Labor Committee, for 
allowing me time under his leadership.

[[Page 7515]]

  I am a proud cosponsor of this bill. I am pleased to see it moving 
forward after more than a decade of advocacy.
  While researchers' ability to identify genetic markers for diseases 
has given hope and promise to millions of people regarding how to make 
more informed choices about their personal behavior, the promise of 
this breakthrough is hindered, as many of my colleagues have said, by 
well-founded fears of how information may be abused in the employment 
and insurance industries.
  While many states, including my own home State of New York, have laws 
which prohibit discrimination in health insurance, and by employers 
based on genetic testing and information, it is clear that the laws are 
not fully comprehensive and that Federal action is necessary, certainly 
to make it more uniform across all 50 States.

                              {time}  1200

  Fear should not be a deterrent to knowledge. Disregarding available 
tests for fear of discrimination prevents citizens from making smarter, 
personalized choices about their own well-being. We know too much to 
subscribe to one-size-fits-all medicine. And once again, it should be 
our physicians, not our insurance companies, who influence our health 
care decisions.
  This is a wonderful bill, very much overdue for enactment, years and 
years and years in the process. It's supported by hundreds of patient 
advocate groups, and will make a true impact on the health care of our 
Nation.
  I urge all my colleagues to support the bill.
  I yield back the balance of my time.
  Mrs. BIGGERT. I have no further speakers, and I reserve the balance 
of my time.
  Mr. GEORGE MILLER of California. I yield 2 minutes to the gentlewoman 
from California (Ms. Linda T. Sanchez), a member of the Education 
Committee.
  Ms. LINDA T. SANCHEZ of California. Mr. Speaker, I rise in strong 
support of the Genetic Information Non-Discrimination Act, and thank my 
colleague, Congresswoman Slaughter, for her tireless work term after 
term to support this bill and ensure that it would eventually become 
law.
  Over the past several years, genetic discoveries have progressed at a 
remarkable rate. Today, doctors and scientists have the ability to 
detect genes linked to common conditions like colon cancer and heart 
disease. Individuals who learn about their genetic risk factors can 
make lifestyle changes and begin treatments that prevent these 
conditions altogether.
  But too many Americans don't take advantage of these amazing 
breakthroughs for a very practical reason. They fear that the 
information will be used to deny them health insurance or even a job.
  While the best way to allay those fears would be to enact universal 
health care coverage for all, this bill is a fantastic first step.
  By prohibiting discrimination on the basis of our genes, this bill 
will improve the chances that average Americans can benefit from 
cutting edge genetic science. It will promote better health care by 
helping Americans feel secure enough to learn about their genetic risk 
factors.
  As the daughter of a father who suffers from Alzheimer's and a mother 
who suffers from arthritis, I personally understand the need to make 
genetic testing a positive step in understanding one's genetic 
predispositions and making health care choices. Genetic testing should 
not be a hindrance to getting or keeping one's job or health care 
benefits.
  While this bill will accomplish many great things, I want to point 
out just two very important ones. Number 1, it will arm people with 
necessary and relevant information about their own health. And Number 
2, it will ensure that people won't be penalized for seeking and using 
this valuable information.
  I urge all my colleagues to support the Genetic Information Non-
Discrimination Act.
  Mrs. BIGGERT. I reserve the balance of my time.
  Mr. GEORGE MILLER of California. I yield 2 minutes to the gentleman 
from Pennsylvania (Mr. Sestak), a member of the Education and Labor 
Committee.
  Mr. SESTAK. Mr. Speaker, the completion of the human genome project 5 
years ago made it possible to identify specific genes that trigger 
diseases later in life. However, out of at fear of losing their jobs or 
their health insurance, studies have shown that many Americans forego 
the potential health benefits of genetic testing.
  While involved in a course at the University of Pennsylvania on 
genetic discrimination, the position paper Dr. Ruth Cowan's students 
presented to me reemphasized that this concern of genetic 
discrimination risks stifling further scientific advances in genetic 
based research.
  No genetic nondiscrimination laws in health care, such as in my State 
of Pennsylvania, may mean foregoing cures based upon genetic research. 
With a young daughter who underwent treatment for a malignant brain 
tumor recently, I understand why, as scientific technology advances, 
discrimination cannot grow with it, or we harm not only the quality of 
life, but life itself.
  With State laws varying in how to maintain the privacy of genetic 
information, the Genetic Information Nondiscrimination Act will set a 
national standard and take the first step toward advancing the 
scientific and health benefits of genetic research and protecting the 
genetic privacy of Americans.
  I urge all my colleagues to support this bill.
  Mrs. BIGGERT. I reserve the balance of my time.
  Mr. GEORGE MILLER of California. I yield myself such time as I may 
consume.
  Mr. Speaker, today we are celebrating, or we will shortly with a vote 
on the Genetic Information Nondiscrimination Act, known as GINA. And 
today we celebrate it with a great sense of unanimity and agreement 
about this legislation. But that clearly was not always true over more 
than the past decade.
  This legislation has been controversial to some. It has had a 
shifting body of opponents to it over those many years. There are many 
who tried to ascribe attributes to this legislation that either wasn't 
intended to address or didn't exist at all. But the opposition was 
formidable.
  But when we celebrate the passage of this legislation today, we must 
also celebrate the spirit of two women in the House of Representatives 
that persevered through all of the political debate, as hot it was from 
time to time, through all of the controversy, through much of the 
ignorance and misinformation about the legislation, but who, throughout 
that entire decade, understood the promise of this legislation, both to 
those who would not be discriminated against in the future, but also 
the promise in terms of medical research and information that would 
become available to promote, not only cures and treatment, but greater 
scientific understanding of the genome and our make-ups and its impact 
on our health.
  And those two women were Congresswoman Louise Slaughter from New 
York, and our colleague who is with us in the Chamber today, Judy 
Biggert from Illinois.
  It's one thing to stand here and say we all agree today. But that 
wasn't the case, and that was what they kept pushing against year after 
year to get the Congress to understand the importance of this 
legislation. We come to that understanding rather late, when you 
consider that many of the States have taken the steps, many Nations 
have taken this step, but it's terribly important that we do it so 
people will be assured that no worker will be discriminated against 
because of his or her genetic information.
  As I mentioned, 41 States have already led the way in passing laws to 
prohibit discrimination to individual health insurance markets. 34 
States have passed laws to prohibit employers from discriminating in 
the workplace. And the Federal Government has banned discrimination 
against Federal Government employees. Every American deserves this 
protection.

[[Page 7516]]

  In the last two decades we've seen incredible scientific advances in 
the diagnosis and the treatment of once untreatable, undetectable 
conditions. Scientists now have the incredible ability to identify 
genetic markers for disease that could and may never occur. Genetic 
testing can also help prevent diseases by identifying them early.
  Despite this amazing potential of genetic testing, advancements have 
been stifled out of fear of what some may do with the results of those 
tests. Many Americans forego testing because of that fear, the fear of 
losing their jobs, the fear of losing their health insurance.
  We pit that against the knowledge, the discovery and the treatment 
that would have been possible to those individuals, but the fear 
prevented them from coming forward. And this is not an isolated fear.
  A 2006 research study showed that 85 percent of the respondents 
believe that without protections, employers would use genetic 
information to discriminate. 64 percent believe that insurers would use 
the information to deny critical coverage.
  The Genetic Information Nondiscrimination Act is clear. Title I of 
the bill prohibits group health plans and insurers from collecting or 
requesting genetic information with narrow exceptions. It also protects 
the privacy of this personal information.
  Title II of the bill prohibits employers from collecting or using 
their employees' genetic information. It also prohibits employers from 
discriminating against employees in hiring, firing and other terms of 
conditions of employment based upon the genetic information.
  This final bill makes it clear that, even though employers may not be 
held accountable for violations committed by health plans under title 
I, employers remain fully liable for any violations of title II, 
including violations involving health benefits.
  It is well settled in this country's employment discrimination laws, 
such as title VII, the Age Discrimination Employment Act and the 
Americans with Disabilities Act, that it is unlawful for employers to 
discriminate against employees in their health benefits.
  We intend for the courts to continue to interpret employer 
obligations under GINA similarly to all other civil rights laws. GINA 
will protect workers like David Escher, a former worker at the 
Burlington Northern Santa Fe Railroad, who discovered his employer was 
trying to prove his injury was caused by a genetic disorder rather than 
work-related injury. This is precisely the type of discrimination and 
misuse of genetic information that we seek to prohibit in this bill.
  The protections provided by GINA are long overdue, and 
Representatives Slaughter and Biggert have fought, over this last 
decade, for these important changes, these important provisions in the 
law. And I want to thank them for all of their hard work.
  I also want to take a moment to thank the members of my staff, 
Michelle Varnhagen, Mark Zuckerman, Brian Kennedy, Jody Calemine and 
Michael Gaffin for all of their efforts.
  From Congressman Andrews' staff, Carlos Fenwick.
  Congresswoman Slaughter's staff, Michelle Adams, Cindy Pelligrini.
  From Congresswoman Biggert's staff, Brian Petersen, Jaime Vickery.
  And from Congressman McKeon's staff, Ed Gilroy and Jim Paretti.
  From Congressman Dingell's staff, Pete Goodloe, Jeanne Ireland, 
Jessica McNiece, Gregg Rothchild, and John Ford.
  From Congressman Frank Pallone's staff, Bobby Clark.
  From Congressman Rangel's and Stark's staff, Cybele Bjorklund and Deb 
Mizeur for all of their assistance.
  And in the Senate, from Senator Kennedy's staff, Dave Bowen, Portia 
Wu and Lauren McFerren.
  And from Senator Snowe's staff, Bill Pewen.
  And from Senator Enzi's staff, Ilyse Schuman and Keith Flannagan. And 
legislative counsel, Ed Grossman, Larry Johnson and Henry Christrup, 
for all of their assistance and all of the effort that they put in to 
making the changes and the distinctions between the actions in the 
House and the Senate, and all of the controversy that this brought with 
them.
  With that, I'd like to reserve the balance of my time so that Ms. 
Biggert may make her closing remarks. And again, I want to thank her so 
much. Her membership on our committee makes us very proud. And her 
political toughness to see this through to the end, along with Louise 
Slaughter, is a wonderful story that we celebrate also with the passage 
of this legislation.
  I reserve the balance of my time.
  Mrs. BIGGERT. I thank you, Mr. Chairman, for your kind words. And 
it's been a long road, but we're here, and with your help.
  Just let me say that there's three benefits that are so important for 
this bill. Number one is that people will get a genetic test. And if it 
shows that they have a propensity for having some disease, they can 
then take preventive measures and take measures that are going to 
improve the quality of their life. And it's personalized medicine. 
People have got to take command of their medical lives.
  Second of all, because people will take preventive measures, this is 
going to reduce the cost of health care. It's going to reduce the cost 
to businesses because their employees will be taking these preventive 
measures, and it's going to reduce the cost to health care providers 
because people, again, will be taking these measures.
  And as I said before, through the clinical trials, it will increase 
the ability to find cures for so many diseases if people get into 
these.
  So with that, I would really like to take a moment to thank 
Representative Slaughter, Chairman Slaughter of the Rules Committee one 
more time, Greg Walden of Oregon who has been a major sponsor of this 
bill, Congressman Andrews of New Jersey, who has been so helpful, and 
Mrs. Eshoo from California, who has been so involved. And then Senator 
Snowe, Senator Kennedy and Senator Enzi for all their hard work on this 
issue. It's truly been a pleasure to work with all of them.
  I would also like to thank Mr. McKeon and Mr. Miller again, the 
chairman and ranking member of the Education and Labor Committee, for 
all their support. And then the other chairmen, Congressman Dingell and 
Congressman Barton of the Energy and Commerce Committee, and Mr. Upton 
of Michigan for coming down and working on this today. And then 
Chairman Rangel and ranking member McCrery of the Ways and Means 
Committee, and then Representative Camp for being the spokesman for 
them. I applaud them for all their efforts.
  I would also like to thank former Speaker Newt Gingrich, who has been 
so supportive of this legislation. And I would be remiss if I didn't 
mention Sharon Terry and the Coalition for Genetic Fairness, as well as 
all of our other organizational supporters, for all their persistence 
and their expertise on this issue.
  And Dr. Francis Collins of NIH for his testimony before all three 
committees in the House.

                              {time}  1215

  Finally, I have to thank the staff, all of the staff, who worked so 
tirelessly for years now behind the scenes on our behalf and put in 
long, long hours on this legislation. And in particular, my thanks go 
to Michelle Varnhagen and Jim Paretti from the Education and Labor 
Committee staff, and then Michelle Adams from Ms. Slaughter's staff, 
and Brian Peterson of my staff.
  There's so many reasons why everybody should vote for this, and 
certainly having passed the House by 420-3 last April and the Senate 
95-0, you say, This is a no-brainer; why didn't this happen a long time 
ago? And what's been alluded to is to get three committees in the House 
of Representatives to work on all of the issues, and they are so 
technical in how they relate to each other and how it relates to 
privacy and the other HIPAA and ADA and all of the things that had to 
be brought in here, I think everyone works so hard just to have a 
wonderful result. And it's no surprise that we're here, but it just 
took a long time.

[[Page 7517]]

  With that, I would urge all my colleagues to vote for this measure.
  I yield back the balance of my time.
  Mr. GEORGE MILLER of California. Mr. Speaker, I also would be remiss 
if I did not thank Dr. Francis Collins for all of his work and 
assistance and guidance to the Congress on this matter and for 
everything else he does in such a wonderful fashion.
  Ms. PELOSI. Mr. Speaker, I rise today in strong support of the 
Genetic Information Nondiscrimination Act.
  I would like to thank Congresswoman Louise Slaughter for her 
outstanding leadership on this issue. For 13 years, she has worked to 
pass this bill to protect Americans from genetic discrimination. She's 
both the powerful chair of the Rules Committee, and a microbiologist, 
so she knows what she is talking about.
  The sequencing of the human genetic code is one of the great 
scientific accomplishments in the history of the world. It has the 
potential to treat and prevent disease. It is evidence of science's 
almost-biblical power to heal.
  But with this scientific breakthrough comes a responsibility to 
protect Americans from the misuse of their genetic information. Today, 
the Congress will begin to fulfill that responsibility by passing this 
legislation.
  This legislation prevents health insurers from adverse coverage or 
pricing decisions based on a person's genetic predisposition toward a 
disease. It ensures an employer cannot make adverse employment 
decisions based on what is in a person's genetic code. It also makes it 
illegal for an insurer or employer to request or demand a gene test.
  Because of this legislation, Americans will be free to undergo 
genetic testing for diseases such as cancer, heart disease, diabetes, 
and Alzheimer's, without fearing for their job or health insurance. 
There is life-saving information in those tests. And for scientists, 
there is information that allows for huge breakthroughs.
  This legislation is supported by the vast majority of the American 
people, 93 percent of whom do not want employers to have access to 
their genetic information.
  This is such good policy that this legislation is supported by more 
than 500 organizations, including a broad coalition of civil rights and 
religious organizations. Health advocacy groups ranging from the 
American Academy of Pediatrics to the March of Dimes to the Susan G. 
Komen Breast Cancer Foundation have endorsed it.
  In the Congress, it has broad bipartisan support. It also has the 
support of the President.
  Let us not wait another day to pass this legislation so it can move 
to the President's desk for his signature and become law.
  Mr. GENE GREEN of Texas. Mr. Speaker, I rise today in support of H.R. 
493, the Genetic Non-Discrimination Act. This bill is the product of 10 
years of hard work by my colleague Ms. Slaughter and I applaud her for 
her efforts to pass this bill.
  The sequencing of the human genome was an amazing scientific 
advancement, and has contributed to the rise of genetic testing to 
inform patients of their proclivity for disease.
  Thanks to genetic testing, individuals with a risk of an illness can 
take precautionary steps ahead of time to ward off disease, which will 
contribute to lower health care costs over time.
  However, it is critical that we protect individuals from any 
discrimination that could result from the information these tests 
reveal.
  The results should not be used by health insurers to deny anyone 
coverage or increase their premiums because of a pre-disposition to a 
certain disease.
  And the results should not be used by employers to discriminate 
against employees based on their predisposition to disease.
  The passage of this bill will encourage individuals to seek genetic 
testing if they so desire without fear of losing their health insurance 
and give them the ability to seek early medical treatment.
  One segment of the health care marketplace was excluded from the 
bill's protections--the long-term care insurance market. This bill was 
never intended to regulate the long-term care insurance market, and I 
understand that current statute treats long-term care insurance 
differently.
  However, individuals that determine that they are at high-risk for 
developing Alzheimer's disease will undoubtedly begin planning for 
their long-term care and probably purchase long-term care insurance.
  Despite all of the good intentions in this legislation, the bill 
would allow long-term care insurance underwriters to refuse to cover or 
charge individuals predisposed to such disease higher premiums for a 
disease they have yet to develop and may never develop.
  As we move forward, Congress should ensure that future legislation 
extends the patient protections inherent in this bill to consumers who 
want to plan for their future and purchase long-term care.
  With that, I am pleased to support this important legislation and 
send this bill to the President.
  Mr. LANGEVIN. Mr. Speaker, I rise in strong support of H.R. 493, the 
Genetic Information Nondiscrimination Act, which extends crucial 
Federal protections against discrimination based on an individual's 
genetic information.
  The new millennium has seen unprecedented scientific advances in 
genetic research that have brought a renewed hope of solving today's 
most difficult medical puzzles. Since the human genome was fully mapped 
in 2003, many in the scientific and medical communities have viewed 
genetic medicine as the next step toward finding better diagnoses, 
treatments and possible cures for a wide spectrum of diseases. These 
advances have also raised legitimate ethical concerns about the 
potential misuse of genetic information in workforce and insurance 
related decisions. Although current law already addresses certain 
aspects of this issue, the importance of protecting individuals from 
discrimination and safeguarding the right to privacy cannot be 
overstated.
  This bill will guarantee more comprehensive protections from 
discrimination in health insurance and employment on the basis of 
genetic information. Specifically, it will 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 develop a disease in the future. Furthermore, it bars 
employers, employment agencies, labor organizations or training 
programs from using an individual's genetic information when making 
hiring, firing, job placement or promotion decisions.
  Genetics is a field of study that offers tremendous promise for 
medical advancement, but we must give thoughtful consideration to the 
implications of these emerging discoveries on society. No individual 
should fear discrimination based on genetic technologies. H.R. 493 will 
allay concerns about the potential for discrimination, encourage 
individuals to participate in genetic research, and take advantage of 
genetic testing, new technologies, and new therapies. I thank 
Congresswoman Slaughter for her leadership on this issue and urge my 
colleagues to support its passage.
  Mr. STUPAK. Mr. Speaker, I rise in support of H.R. 493, the Genetic 
Information Nondiscrimination Act, GINA.
  After 13 years--this bill will finally make its way to the 
President's desk, to help protect families from genetic discrimination.
  Congratulations to the Congresswoman from New York, Ms. Slaughter, 
for her work in drafting this bill and guiding it through the 
cumbersome referral to three committees.
  Together, with Chairman Dingell, Ms. DeGette and Mr. Smith, we were 
able to include an important provision to protect families from unfair 
treatment on the basis of the genetic material of their fetuses or 
children in the process of adoption.
  Without this bill, families may face genetic information 
discrimination from testing of embryos and fetuses, as well as children 
who are in the process of adoption.
  As genetic testing becomes increasingly common, these provisions will 
ensure that genetic material gathered through pre-implementation 
genetic diagnoses, amniocentesis, or other future techniques is not 
used to limit families' access to health care.
  Again, I thank Ms. Slaughter for her commitment to reflect these 
changes throughout the bill in order to avoid any further confusion as 
to whether or not families can be discriminated against on the basis of 
the genetic material of their unborn child or child under consideration 
for adoption.
  I was proud to work with many Members to include this provision.
  I encourage my colleagues to vote for this important legislation.
  Mr. KENNEDY. Mr. Speaker, I rise today in strong support of H.R. 493, 
the Genetic Information Nondiscrimination Act. I would like to thank my 
good friends and colleagues, Representative Louise Slaughter and 
Representative Judy Biggert, for their tireless advocacy to bring this 
bill to the House floor today and then on to the White House for 
President Bush's signature.
  There is nothing more personal and more deserving of protection than 
the genetic make-up of each and every individual in our Nation. 
Advances in science and technology during the past decade have allowed 
us to map the human genome and opened the doors to treatment and 
diagnostic capabilities that we are only now beginning to realize. With 
this power comes great responsibility to protect individuals who learn 
that they may be more

[[Page 7518]]

susceptible to diseases such as breast cancer or mental illness.
  Just as our Nation does not allow discrimination based on race or 
disability, we must not allow discrimination based on our own genetic 
identity. The Genetic Information Nondiscrimination Act will prevent 
health insurers and employers from improperly using our genetic 
information to make coverage or employment decisions. I urge my 
colleagues to support this protection of our most basic human right by 
voting for H.R. 493.
  Mr. VAN HOLLEN. Mr. Speaker, I rise in strong support of the Senate 
amendment to H.R. 493, the Genetic Information Nondiscrimination Act.
  This bipartisan legislation is long overdue. Recent scientific 
breakthroughs in sequencing the human genetic code have already 
transformed the battle against a broad range of medical conditions. 
Scientists have now identified genetic markers for a variety of chronic 
health conditions which will increase the potential for early treatment 
and prevention. However, as much as these advances will improve health 
care delivery in this country, it has increased the potential for 
employers and insurers to discriminate based on an individual's genetic 
makeup. Such a threat deters the public and science from taking full 
advantage of the life-saving and cost-saving potential of genetic 
research.
  That why we need to pass this much-needed bill. Discriminating 
against someone because of their DNA is simply unacceptable. Mr. 
Speaker, I urge colleagues to support this bipartisan legislation so 
that Americans do not have to live in fear of losing their job or 
health insurance because of their genetic predisposition towards 
certain medical conditions.
  Mrs. CAPPS. Mr. Speaker, I rise in strong support of the Senate 
amendment to H.R. 493, the Genetic Information Nondiscrimination Act.
  The identification of genetic markers for disease is one of the most 
remarkable scientific accomplishments we have made. And this ability to 
identify risks for certain conditions holds so much promise for our 
ability to identify and practice greater preventive health care in this 
country. I can never emphasize enough just how important preventive 
health care is to our well-being.
  However, as with almost all great scientific advancements, we have 
also opened the door to a whole slew of unintended consequences. And I 
fear that preventive health care is put at risk when patients decline 
genetic testing for fear of insurance or employment discrimination.
  This bill before us will put aside those fears by offering protection 
from employment discrimination and closes the loopholes that deter 
individuals from pursuing information that can save their lives and the 
lives of others. After all, the biomedical research community is in 
dire need of greater clinical trial participation. But many patients 
are wary because they worry that participation in a clinical trial will 
reveal a genetic predisposition that employers or insurers can use as a 
basis for discrimination.
  H.R. 493 will provide individuals the security of knowing that they 
can take advantage of genetic testing and participate in research 
without the fear that their employment or insurance status be put at 
risk.
  I commend my colleagues Louise Slaughter, Judy Biggert and Anna Eshoo 
for their tireless work on this bill over the last 13 years. I urge all 
of my colleagues to vote in favor of H.R. 493.
  Ms. SPEIER. Mr. Speaker, Congress today is making an important first 
step toward protecting Americans from discrimination based on their 
genetic information. I support this bill and the premise that a 
predisposition to disease should never be a factor in access to 
employment or insurance coverage.
  However, this is only a first step. I am compelled to remind this 
House, and all Americans, that this bill does not guarantee genetic 
information will not be abused by employers or insurers. The passage of 
this legislation should not give consumers a false sense of security.
  Until access to health care is available regardless of current or 
future health conditions, the potential for genetic discrimination will 
remain. And until we completely limit access to employee health 
records, there will be the potential for discrimination by employers.
  Mr. Speaker, passage of the Genetic Information Non-Discrimination 
Act today is a strong step toward protecting sensitive genetic 
information, but no journey is completed in just one step. I look 
forward to addressing the underlying problems not fixed by this bill so 
we can truly protect Americans' privacy and guard against 
discrimination based on preexisting health conditions.
  Ms. BALDWIN. Mr. Speaker, I rise today in strong support of the 
Genetic Information Nondiscrimination Act.
  The scientific advancement that has been made in sequencing the human 
genome is groundbreaking. We have only just begun to understand how we 
can harness the vast amount of information that is included in our 
genetic code to benefit human health and longevity. The ability to 
predict disease will greatly increase our opportunities for early 
treatment and prevention efforts and this can have a real impact on 
people's lives.
  So I am proud to support the Genetic Information Nondiscrimination 
Act. This bill will provide strong protections to prevent employers and 
insurers from denying health coverage or job opportunities on the basis 
of predictive genetic information. Providing this protection will 
ensure that Americans are not unfairly penalized, either by health 
insurers or by employers, for something that is a part of their genetic 
makeup. In addition, these protections will encourage individuals to 
participate in genetic research, which will lead to new technologies 
and new therapies.
  This important nondiscrimination protection is necessitated by the 
advancements in science, like the mapping of the human genome. And 
Congress is responsible for making sure that our laws keep up with 
these scientific advancements, so that we can fully realize the value 
of these discoveries.
  Mr. Speaker, I am proud to support the Genetic Nondiscrimination Act, 
and I urge my colleagues to join me in voting in favor of it.
  Ms. JACKSON-LEE of Texas. Mr. Speaker, I rise today in support of 
H.R. 493, ``The Genetic Information Nondiscrimination Act (GINA)''. I 
would like to thank my colleague Congresswoman Louise McIntosh 
Slaughter, from NewYork, for introducing this important legislation. I 
would also like to thank my colleagues on the Energy and Commerce, Ways 
and Means, Education and Labor committees for their leadership in this 
highly contentious and complex health issue.
  The Genetic Information Nondiscrimination Act (GINA) would restrict 
health insurers' Title I, and employer's Title II, acquisition and use 
of genetic information in several ways. It is also supported by 
consumer groups, the medical profession, researchers, the medical 
products industry and pharmaceutical companies.
  Since the first bills were introduced in the 103d Congress, many of 
the arguments and positions supporting and opposing genetic 
nondiscrimination legislation have remained largely unchanged. The 
simple fact is without protection, people are apprehensive about 
seeking potentially beneficial genetic services or participating in 
much needed clinical research.
  Alex Haley, the gifted author of Roots, stated on the front page of 
his book that ``In all of us there is a hunger, marrow deep, to know 
our heritage--to know who we are and where we have come from. Without 
this enriching knowledge there is a hollow yearning. No matter what our 
attainment in life, there is still a vacuum, an emptiness and the most 
disquieting loneliness.''
   When author Alex Haley revealed his Roots in the late 1970s, 
everyone in the Nation, it seemed, wondered about their own great-
great-great-grandparents. As a result, the genealogical quest fever 
spread, particularly among African Americans.
  It took Haley more than a decade to trace back several generations, 
but as most Black people realize, not many of similar heritage will be 
able to unearth their lineage even that soon. That's because few, if 
any, reliable records of the centuries-long Atlantic slave trade remain 
to help in the search. That's what became all too apparent to 
rheumatologist Dr. Paul Plotz in 1992, when ``a chance occurrence'' 
pointed his research on a rare muscle disorder to West Africa and ``the 
greatest undocumented migration of modern times.''
  As Haley pointed out, people have an inherent interest in knowing 
their heritage. Our investment in modern science, specifically the 
Human Genome Project, is poised not only to reveal medical truths about 
ourselves and our potential for health, but also to help us make that 
connection to our past.
  While some of my colleagues are focused that GINA will provide 
further incentives and additional opportunities for litigation against 
employers, they seem to forget the very real concern of individual 
protections. In an age where electronic databases are easily tampered 
with and private information is passed around like a bad cold, we must 
focus on the rights of individuals and their families when dealing with 
such a complex and contentious issue.
  At a time when we want people to seek out preventative care and gain 
greater health literacy, we want to ensure them that they are safe and 
big brother is not selling their detailed information to the highest 
bidder.
  Researchers at Penn State University have stated that from a medical 
viewpoint, African genetic diversity is important in understanding

[[Page 7519]]

genetic diseases of African Americans and for finding treatment methods 
for contagious diseases that originated in Africa. These researchers 
have said that if they could identify the genetic changes that provided 
this protection, then they might be able to find treatment methods for 
the diseases.
  These revolutionary discoveries are due to a diverse group of people 
feeling secure enough with their doctors, nurses, and health insurance 
companies that they participate in genetic testing and research 
studies.
  We exclaim that we want better health care, greater incidence of 
prevention, better understanding of current diseases, and most 
importantly more cures to the illnesses of Americans. This is what 
genetic testing and research can do. If we allow employers and health 
insurance companies manipulate the data to further restrict Americans' 
access to quality care, then we should not support this bill.
  However, if we are for access to quality health care, if we are for 
greater understanding of infectious diseases and mutations, if we are 
for privacy protections in medical records and payment systems . . . 
then we must give our full support to this bill.
   Thank you, Mr. Speaker, for your leadership in the area of health 
care access. This is yet one more area that allows us to support an 
individual's right to care without fear of retribution by increased 
health insurance payments or even worse, denial of care altogether. 
Vote in support of Access, Understanding, and Privacy.
  Ms. McCOLLUM of Minnesota. Mr. Speaker, I rise today in strong 
support of the Genetic Information Nondiscrimination Act, H.R. 493.
  I am a cosponsor of this important legislation, which bans genetic 
discrimination in the workplace and in health insurance on the basis of 
predictive genetic information. It prohibits insurance companies from 
denying coverage or increasing premiums because of genetic factors. 
Also, under this bill, employers cannot consider genetic factors in the 
process of hiring, firing, or promoting workers.
  H.R. 493 is similar to Minnesota law, which I voted for when I was a 
member of the Minnesota House of Representatives. Minnesota law sets 
basic privacy protections for the collection of genetic information by 
Government agencies and private entities. Unfortunately, not all States 
offer protection against genetic discrimination. This leaves most 
Americans unsure of how their private information will be protected. 
National legislation needs to be implemented now, before genetic 
discrimination becomes more widespread as genetic testing comes into 
greater use.
  Discrimination based on a person's genetic information, just like 
that based on race or disability, should not be tolerated. Genetic 
discrimination has the potential to affect every person in the United 
States. Despite advances in modern medical technology, it is impossible 
to predict with certainty whether a given individual will actually 
develop a disease. Patients recognize that few laws exist to prevent 
health insurers or employers from using their predictive genetic 
information to deny them coverage or jobs. As a result, fear of such 
discrimination could cause individuals to refuse potentially life-
saving testing or participate in genetic research.
  Federal employees are already protected from genetic discrimination 
by an executive order signed by President Clinton. It is time to extend 
this protection to the rest of our country.
  H.R. 493 will give Americans the security they need to take care of 
their health needs without worrying that they will face discrimination. 
This bill has been pending for over 13 years now. Under Republican 
control there were no hearings on this important topic. Within one year 
of Democrats taking control of the House this bill was passed, and is 
now on its way to the President's desk.
  This bill is the right thing to do to protect access to health care 
and against genetic discrimination in the workplace. I urge my 
colleagues to join me in supporting this bill.
  Mr. GEORGE MILLER of California. I yield back the balance of my time.
  The SPEAKER pro tempore (Mr. Pastor). All time for debate has 
expired.
  Pursuant to House Resolution 1156, the previous question is ordered.
  The question is on the motion offered by the gentleman from 
California (Mr. George Miller).
  The question was taken; and the Speaker pro tempore announced that 
the ayes appeared to have it.
  Mr. GEORGE MILLER of California. Mr. Speaker, on that I demand the 
yeas and nays.
  The yeas and nays were ordered.
  The SPEAKER pro tempore. Pursuant to clause 8 of rule XX, this 15-
minute vote on the motion to concur will be followed by 5-minute votes 
on ordering the previous question on House Resolution 1167; adopting 
House Resolution 1165, if ordered; and suspending the rules and 
adopting House Concurrent Resolution 308.
  The vote was taken by electronic device, and there were--yeas 414, 
nays 1, not voting 16, as follows:

                             [Roll No. 234]

                               YEAS--414

     Abercrombie
     Ackerman
     Aderholt
     Akin
     Alexander
     Allen
     Altmire
     Andrews
     Arcuri
     Baca
     Bachmann
     Bachus
     Baird
     Baldwin
     Barrett (SC)
     Bartlett (MD)
     Barton (TX)
     Bean
     Becerra
     Berkley
     Berman
     Berry
     Biggert
     Bilbray
     Bilirakis
     Bishop (GA)
     Bishop (NY)
     Bishop (UT)
     Blumenauer
     Blunt
     Boehner
     Bonner
     Bono Mack
     Boozman
     Boren
     Boswell
     Boucher
     Boustany
     Boyd (FL)
     Boyda (KS)
     Brady (PA)
     Brady (TX)
     Braley (IA)
     Broun (GA)
     Brown (SC)
     Brown, Corrine
     Brown-Waite, Ginny
     Buchanan
     Burton (IN)
     Butterfield
     Buyer
     Calvert
     Camp (MI)
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[[Page 7520]]


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                                NAYS--1

       
     Paul
       

                             NOT VOTING--16

     Barrow
     Blackburn
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     Cubin
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     Forbes
     Fossella
     Gohmert
     Honda
     Israel
     Jones (OH)
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     Rush
     Wilson (NM)

                              {time}  1240

  Ms. FOXX and Mr. BURTON of Indiana changed their vote from ``nay'' to 
``yea.''
  So the motion was agreed to.
  The result of the vote was announced as above recorded.
  A motion to reconsider was laid on the table.

                          ____________________