[Congressional Record Volume 151, Number 17 (Wednesday, February 16, 2005)]
[Senate]
[Pages S1459-S1486]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]
GENETIC INFORMATION NONDISCRIMINATION ACT OF 2005
Mr. ENZI. Mr. President, I ask unanimous consent that the Senate now
proceed to the consideration of Calendar No. 3, S. 306, the Genetic
Information Nondiscrimination Act of 2005; provided that there be 90
minutes of debate equally divided between the chairman and ranking
member of the HELP committee; provided further that the only amendment
in order, other than the committee-reported amendment, be a substitute
which is at the desk, and following the use or yielding back of time
the substitute amendment be agreed to, the committee-reported
amendment, as amended, be agreed to, the bill, as amended, be read a
third time, and the Senate proceed to a vote on passage without any
intervening action or debate at a time determined by the majority
leader, after consultation with the Democratic leader.
The PRESIDING OFFICER. Is there any objection? Without objection, it
is so ordered.
The clerk will report the bill by title.
The assistant legislative clerk read as follows:
A bill (S. 306) to prohibit discrimination on the basis of
genetic information with respect to health insurance and
employment.
The Senate proceeded to consider the bill which had been reported
from the Committee on Health, Education, Labor, and Pensions with an
amendment to strike all after the enacting clause and insert in lieu
thereof the following:
[Strike the part shown in black brackets and insert the part shown in
italic.]
S. 306
Be it enacted by the Senate and House of Representatives of
the United States of America in Congress assembled,
[SECTION 1. SHORT TITLE; TABLE OF CONTENTS.
[(a) Short Title.--This Act may be cited as the ``Genetic
Information Nondiscrimination Act of 2005''.
[(b) Table of Contents.--The table of contents of this Act
is as follows:
[Sec. 1. Short title; table of contents.
[Sec. 2. Findings.
[TITLE I--GENETIC NONDISCRIMINATION IN HEALTH INSURANCE
[Sec. 101. Amendments to Employee Retirement Income Security Act of
1974.
[Sec. 102. Amendments to the Public Health Service Act.
[Sec. 103. Amendments to the Internal Revenue Code of 1986.
[Sec. 104. Amendments to title XVIII of the Social Security Act
relating to medigap.
[Sec. 105. Privacy and confidentiality.
[Sec. 106. Assuring coordination.
[Sec. 107. Regulations; effective date.
[TITLE II--PROHIBITING EMPLOYMENT DISCRIMINATION ON THE BASIS OF
GENETIC INFORMATION
[Sec. 201. Definitions.
[Sec. 202. Employer practices.
[Sec. 203. Employment agency practices.
[Sec. 204. Labor organization practices.
[Sec. 205. Training programs.
[Sec. 206. Confidentiality of genetic information.
[Sec. 207. Remedies and enforcement.
[Sec. 208. Disparate impact.
[Sec. 209. Construction.
[Sec. 210. Medical information that is not genetic information.
[Sec. 211. Regulations.
[Sec. 212. Authorization of appropriations.
[Sec. 213. Effective date.
[TITLE III--MISCELLANEOUS PROVISION
[Sec. 301. Severability.
[SEC. 2. FINDINGS.
[Congress makes the following findings:
[(1) Deciphering the sequence of the human genome and other
advances in genetics open major new opportunities for medical
progress. New knowledge about the genetic basis of illness
will allow for earlier detection of illnesses, often before
symptoms have begun. Genetic testing can allow individuals to
take steps to reduce the likelihood that they will contract a
particular disorder. New knowledge about genetics may allow
for the development of better therapies that are more
effective against disease or have fewer side effects than
current treatments. These advances give rise to the potential
misuse of genetic information to discriminate in health
insurance and employment.
[(2) The early science of genetics became the basis of
State laws that provided for the sterilization of persons
having presumed genetic ``defects'' such as mental
retardation, mental disease, epilepsy, blindness, and hearing
loss, among other conditions. The first sterilization law was
enacted in the State of Indiana in 1907. By 1981, a majority
of States adopted sterilization laws to ``correct'' apparent
genetic traits or tendencies. Many of these State laws have
since been repealed, and many have been modified to include
essential constitutional requirements of due process and
equal protection. However, the current explosion in the
science of genetics, and the history of sterilization laws by
the States based on early genetic science, compels
Congressional action in this area.
[(3) Although genes are facially neutral markers, many
genetic conditions and disorders are associated with
particular racial and ethnic groups and gender. Because some
genetic traits are most prevalent in particular groups,
members of a particular group may be stigmatized or
discriminated against as a result of that genetic
information. This form of discrimination was evident in the
1970s, which saw the advent of programs to screen and
identify carriers of sickle cell anemia, a disease which
afflicts African-Americans. Once again, State legislatures
began to enact discriminatory laws in the area, and in the
early 1970s began mandating genetic screening of all African
Americans for sickle cell anemia, leading to discrimination
and unnecessary fear. To alleviate some of this stigma,
Congress in 1972 passed the National Sickle Cell Anemia
Control Act, which withholds Federal funding from States
unless sickle cell testing is voluntary.
[(4) Congress has been informed of examples of genetic
discrimination in the workplace. These include the use of
pre-employment genetic screening at Lawrence Berkeley
Laboratory, which led to a court decision in favor of the
employees in that case Norman-Bloodsaw v. Lawrence Berkeley
Laboratory (135 F.3d 1260, 1269 (9th Cir. 1998)). Congress
clearly has a compelling public interest in relieving the
fear of discrimination and in prohibiting its actual practice
in employment and health insurance.
[(5) Federal law addressing genetic discrimination in
health insurance and employment is incomplete in both the
scope and depth of its protections. Moreover, while many
States have enacted some type of genetic non-discrimination
law, these laws vary widely with respect to their approach,
application, and level of protection. Congress has collected
substantial evidence that the American public and the medical
community find the existing patchwork of State and Federal
laws to be confusing and inadequate to protect them from
discrimination. Therefore Federal legislation establishing a
national and uniform basic standard is necessary to fully
protect the public from discrimination and allay their
concerns about the potential for discrimination, thereby
allowing individuals to take advantage of genetic testing,
technologies, research, and new therapies.
[TITLE I--GENETIC NONDISCRIMINATION IN HEALTH INSURANCE
[SEC. 101. AMENDMENTS TO EMPLOYEE RETIREMENT INCOME SECURITY
ACT OF 1974.
[(a) Prohibition of Health Discrimination on the Basis of
Genetic Information or Genetic Services.--
[(1) No enrollment restriction for genetic services.--
Section 702(a)(1)(F) of the Employee Retirement Income
Security Act of 1974 (29 U.S.C. 1182(a)(1)(F)) is amended by
inserting before the period the following: ``(including
information about a request for or receipt of genetic
services by an individual or family member of such
individual)''.
[(2) No discrimination in group premiums based on genetic
information.--Section 702(b) of the Employee Retirement
Income Security Act of 1974 (29 U.S.C. 1182(b)) is amended--
[(A) in paragraph (2)(A), by inserting before the semicolon
the following: ``except as provided in paragraph (3)''; and
[(B) by adding at the end the following:
[``(3) No discrimination in group premiums based on genetic
information.--For purposes of this section, a group health
plan, or a health insurance issuer offering group health
insurance coverage in connection with a group health plan,
shall not adjust premium or contribution amounts for a group
on the basis of genetic information concerning an individual
in the group or a family member of the individual (including
information about a request for or receipt of genetic
services by an individual or family member of such
individual).''.
[(b) Limitations on Genetic Testing.--Section 702 of the
Employee Retirement Income Security Act of 1974 (29 U.S.C.
1182) is amended by adding at the end the following:
[``(c) Genetic Testing.--
[``(1) Limitation on requesting or requiring genetic
testing.--A group health plan, or a health insurance issuer
offering health insurance coverage in connection with a group
health plan, shall not request or require an individual or a
family member of such individual to undergo a genetic test.
[[Page S1460]]
[``(2) Rule of construction.--Nothing in this part shall be
construed to--
[``(A) limit the authority of a health care professional
who is providing health care services with respect to an
individual to request that such individual or a family member
of such individual undergo a genetic test;
[``(B) limit the authority of a health care professional
who is employed by or affiliated with a group health plan or
a health insurance issuer and who is providing health care
services to an individual as part of a bona fide wellness
program to notify such individual of the availability of a
genetic test or to provide information to such individual
regarding such genetic test; or
[``(C) authorize or permit a health care professional to
require that an individual undergo a genetic test.
[``(d) Application to All Plans.--The provisions of
subsections (a)(1)(F), (b)(3), and (c) shall apply to group
health plans and health insurance issuers without regard to
section 732(a).''.
[(c) Remedies and Enforcement.--Section 502 of the Employee
Retirement Income Security Act of 1974 (29 U.S.C. 1132) is
amended by adding at the end the following:
[``(n) Enforcement of Genetic Nondiscrimination
Requirements.--
[``(1) Injunctive relief for irreparable harm.--With
respect to any violation of subsection (a)(1)(F), (b)(3), or
(c) of section 702, a participant or beneficiary may seek
relief under subsection 502(a)(1)(B) prior to the exhaustion
of available administrative remedies under section 503 if it
is demonstrated to the court, by a preponderance of the
evidence, that the exhaustion of such remedies would cause
irreparable harm to the health of the participant or
beneficiary. Any determinations that already have been made
under section 503 in such case, or that are made in such case
while an action under this paragraph is pending, shall be
given due consideration by the court in any action under this
subsection in such case.
[``(2) Equitable relief for genetic nondiscrimination.--
[``(A) Reinstatement of benefits where equitable relief has
been awarded.--The recovery of benefits by a participant or
beneficiary under a civil action under this section may
include an administrative penalty under subparagraph (B) and
the retroactive reinstatement of coverage under the plan
involved to the date on which the participant or beneficiary
was denied eligibility for coverage if--
[``(i) the civil action was commenced under subsection
(a)(1)(B); and
[``(ii) the denial of coverage on which such civil action
was based constitutes a violation of subsection (a)(1)(F),
(b)(3), or (c) of section 702.
[``(B) Administrative penalty.--
[``(i) In general.--An administrator who fails to comply
with the requirements of subsection (a)(1)(F), (b)(3), or (c)
of section 702 with respect to a participant or beneficiary
may, in an action commenced under subsection (a)(1)(B), be
personally liable in the discretion of the court, for a
penalty in the amount not more than $100 for each day in the
noncompliance period.
[``(ii) Noncompliance period.--For purposes of clause (i),
the term `noncompliance period' means the period--
[``(I) beginning on the date that a failure described in
clause (i) occurs; and
[``(II) ending on the date that such failure is corrected.
[``(iii) Payment to participant or beneficiary.--A penalty
collected under this subparagraph shall be paid to the
participant or beneficiary involved.
[``(3) Secretarial enforcement authority.--
[``(A) General rule.--The Secretary has the authority to
impose a penalty on any failure of a group health plan to
meet the requirements of subsection (a)(1)(F), (b)(3), or (c)
of section 702.
[``(B) Amount.--
[``(i) In general.--The amount of the penalty imposed by
subparagraph (A) shall be $100 for each day in the
noncompliance period with respect to each individual to whom
such failure relates.
[``(ii) Noncompliance period.--For purposes of this
paragraph, the term `noncompliance period' means, with
respect to any failure, the period--
[``(I) beginning on the date such failure first occurs; and
[``(II) ending on the date such failure is corrected.
[``(C) Minimum penalties where failure discovered.--
Notwithstanding clauses (i) and (ii) of subparagraph (D):
[``(i) In general.--In the case of 1 or more failures with
respect to an individual--
[``(I) which are not corrected before the date on which the
plan receives a notice from the Secretary of such violation;
and
[``(II) which occurred or continued during the period
involved;
the amount of penalty imposed by subparagraph (A) by reason
of such failures with respect to such individual shall not be
less than $2,500.
[``(ii) Higher minimum penalty where violations are more
than de minimis.--To the extent violations for which any
person is liable under this paragraph for any year are more
than de minimis, clause (i) shall be applied by substituting
`$15,000' for `$2,500' with respect to such person.
[``(D) Limitations.--
[``(i) Penalty not to apply where failure not discovered
exercising reasonable diligence.--No penalty shall be imposed
by subparagraph (A) on any failure during any period for
which it is established to the satisfaction of the Secretary
that the person otherwise liable for such penalty did not
know, and exercising reasonable diligence would not have
known, that such failure existed.
[``(ii) Penalty not to apply to failures corrected within
certain periods.--No penalty shall be imposed by subparagraph
(A) on any failure if--
[``(I) such failure was due to reasonable cause and not to
willful neglect; and
[``(II) such failure is corrected during the 30-day period
beginning on the first date the person otherwise liable for
such penalty knew, or exercising reasonable diligence would
have known, that such failure existed.
[``(iii) Overall limitation for unintentional failures.--In
the case of failures which are due to reasonable cause and
not to willful neglect, the penalty imposed by subparagraph
(A) for failures shall not exceed the amount equal to the
lesser of--
[``(I) 10 percent of the aggregate amount paid or incurred
by the employer (or predecessor employer) during the
preceding taxable year for group health plans; or
[``(II) $500,000.
[``(E) Waiver by secretary.--In the case of a failure which
is due to reasonable cause and not to willful neglect, the
Secretary may waive part or all of the penalty imposed by
subparagraph (A) to the extent that the payment of such
penalty would be excessive relative to the failure
involved.''.
[(d) Definitions.--Section 733(d) of the Employee
Retirement Income Security Act of 1974 (29 U.S.C. 1191b(d))
is amended by adding at the end the following:
[``(5) Family member.--The term `family member' means with
respect to an individual--
[``(A) the spouse of the individual;
[``(B) a dependent child of the individual, including a
child who is born to or placed for adoption with the
individual; and
[``(C) all other individuals related by blood to the
individual or the spouse or child described in subparagraph
(A) or (B).
[``(6) Genetic information.--
[``(A) In general.--Except as provided in subparagraph (B),
the term `genetic information' means information about--
[``(i) an individual's genetic tests;
[``(ii) the genetic tests of family members of the
individual; or
[``(iii) the occurrence of a disease or disorder in family
members of the individual.
[``(B) Exclusions.--The term `genetic information' shall
not include information about the sex or age of an
individual.
[``(7) Genetic test.--
[``(A) In general.--The term `genetic test' means an
analysis of human DNA, RNA, chromosomes, proteins, or
metabolites, that detects genotypes, mutations, or
chromosomal changes.
[``(B) Exceptions.--The term `genetic test' does not mean--
[``(i) an analysis of proteins or metabolites that does not
detect genotypes, mutations, or chromosomal changes; or
[``(ii) an analysis of proteins or metabolites that is
directly related to a manifested disease, disorder, or
pathological condition that could reasonably be detected by a
health care professional with appropriate training and
expertise in the field of medicine involved.
[``(8) Genetic services.--The term `genetic services'
means--
[``(A) a genetic test;
[``(B) genetic counseling (such as obtaining, interpreting,
or assessing genetic information); or
[``(C) genetic education.''.
[(e) Regulations and Effective Date.--
[(1) Regulations.--Not later than 1 year after the date of
enactment of this title, the Secretary of Labor shall issue
final regulations in an accessible format to carry out the
amendments made by this section.
[(2) Effective date.--The amendments made by this section
shall apply with respect to group health plans for plan years
beginning after the date that is 18 months after the date of
enactment of this title.
[SEC. 102. AMENDMENTS TO THE PUBLIC HEALTH SERVICE ACT.
[(a) Amendments Relating to the Group Market.--
[(1) Prohibition of health discrimination on the basis of
genetic information or genetic services.--
[(A) No enrollment restriction for genetic services.--
Section 2702(a)(1)(F) of the Public Health Service Act (42
U.S.C. 300gg-1(a)(1)(F)) is amended by inserting before the
period the following: ``(including information about a
request for or receipt of genetic services by an individual
or family member of such individual)''.
[(B) No discrimination in group premiums based on genetic
information.--Section 2702(b) of the Public Health Service
Act (42 U.S.C. 300gg-1(b)) is amended--
[(i) in paragraph (2)(A), by inserting before the semicolon
the following: ``, except as provided in paragraph (3)''; and
[(ii) by adding at the end the following:
[``(3) No discrimination in group premiums based on genetic
information.--For purposes of this section, a group health
plan, or a health insurance issuer offering group health
insurance coverage in connection with a group health plan,
shall not adjust premium or contribution amounts for a group
on the basis of genetic information concerning an individual
in the group or a family member of the individual (including
[[Page S1461]]
information about a request for or receipt of genetic
services by an individual or family member of such
individual).''.
[(2) Limitations on genetic testing.--Section 2702 of the
Public Health Service Act (42 U.S.C. 300gg-1) is amended by
adding at the end the following:
[``(c) Genetic Testing.--
[``(1) Limitation on requesting or requiring genetic
testing.--A group health plan, or a health insurance issuer
offering health insurance coverage in connection with a group
health plan, shall not request or require an individual or a
family member of such individual to undergo a genetic test.
[``(2) Rule of construction.--Nothing in this part shall be
construed to--
[``(A) limit the authority of a health care professional
who is providing health care services with respect to an
individual to request that such individual or a family member
of such individual undergo a genetic test;
[``(B) limit the authority of a health care professional
who is employed by or affiliated with a group health plan or
a health insurance issuer and who is providing health care
services to an individual as part of a bona fide wellness
program to notify such individual of the availability of a
genetic test or to provide information to such individual
regarding such genetic test; or
[``(C) authorize or permit a health care professional to
require that an individual undergo a genetic test.
[``(d) Application to All Plans.--The provisions of
subsections (a)(1)(F), (b)(3), and (c) shall apply to group
health plans and health insurance issuers without regard to
section 2721(a).''.
[(3) Remedies and enforcement.--Section 2722(b) of the
Public Health Service Act (42 U.S.C. 300gg-22)(b)) is amended
by adding at the end the following:
[``(3) Enforcement authority relating to genetic
discrimination.--
[``(A) General rule.--In the cases described in paragraph
(1), notwithstanding the provisions of paragraph (2)(C), the
following provisions shall apply with respect to an action
under this subsection by the Secretary with respect to any
failure of a health insurance issuer in connection with a
group health plan, to meet the requirements of subsection
(a)(1)(F), (b)(3), or (c) of section 2702.
[``(B) Amount.--
[``(i) In general.--The amount of the penalty imposed under
this paragraph shall be $100 for each day in the
noncompliance period with respect to each individual to whom
such failure relates.
[``(ii) Noncompliance period.--For purposes of this
paragraph, the term `noncompliance period' means, with
respect to any failure, the period--
[``(I) beginning on the date such failure first occurs; and
[``(II) ending on the date such failure is corrected.
[``(C) Minimum penalties where failure discovered.--
Notwithstanding clauses (i) and (ii) of subparagraph (D):
[``(i) In general.--In the case of 1 or more failures with
respect to an individual--
[``(I) which are not corrected before the date on which the
plan receives a notice from the Secretary of such violation;
and
[``(II) which occurred or continued during the period
involved;
the amount of penalty imposed by subparagraph (A) by reason
of such failures with respect to such individual shall not be
less than $2,500.
[``(ii) Higher minimum penalty where violations are more
than de minimis.--To the extent violations for which any
person is liable under this paragraph for any year are more
than de minimis, clause (i) shall be applied by substituting
`$15,000' for `$2,500' with respect to such person.
[``(D) Limitations.--
[``(i) Penalty not to apply where failure not discovered
exercising reasonable diligence.--No penalty shall be imposed
by subparagraph (A) on any failure during any period for
which it is established to the satisfaction of the Secretary
that the person otherwise liable for such penalty did not
know, and exercising reasonable diligence would not have
known, that such failure existed.
[``(ii) Penalty not to apply to failures corrected within
certain periods.--No penalty shall be imposed by subparagraph
(A) on any failure if--
[``(I) such failure was due to reasonable cause and not to
willful neglect; and
[``(II) such failure is corrected during the 30-day period
beginning on the first date the person otherwise liable for
such penalty knew, or exercising reasonable diligence would
have known, that such failure existed.
[``(iii) Overall limitation for unintentional failures.--In
the case of failures which are due to reasonable cause and
not to willful neglect, the penalty imposed by subparagraph
(A) for failures shall not exceed the amount equal to the
lesser of--
[``(I) 10 percent of the aggregate amount paid or incurred
by the employer (or predecessor employer) during the
preceding taxable year for group health plans; or
[``(II) $500,000.
[``(E) Waiver by secretary.--In the case of a failure which
is due to reasonable cause and not to willful neglect, the
Secretary may waive part or all of the penalty imposed by
subparagraph (A) to the extent that the payment of such
penalty would be excessive relative to the failure
involved.''.
[(4) Definitions.--Section 2791(d) of the Public Health
Service Act (42 U.S.C. 300gg-91(d)) is amended by adding at
the end the following:
[``(15) Family member.--The term `family member' means with
respect to an individual--
[``(A) the spouse of the individual;
[``(B) a dependent child of the individual, including a
child who is born to or placed for adoption with the
individual; and
[``(C) all other individuals related by blood to the
individual or the spouse or child described in subparagraph
(A) or (B).
[``(16) Genetic information.--
[``(A) In general.--Except as provided in subparagraph (B),
the term `genetic information' means information about--
[``(i) an individual's genetic tests;
[``(ii) the genetic tests of family members of the
individual; or
[``(iii) the occurrence of a disease or disorder in family
members of the individual.
[``(B) Exclusions.--The term `genetic information' shall
not include information about the sex or age of an
individual.
[``(17) Genetic test.--
[``(A) In general.--The term `genetic test' means an
analysis of human DNA, RNA, chromosomes, proteins, or
metabolites, that detects genotypes, mutations, or
chromosomal changes.
[``(B) Exceptions.--The term `genetic test' does not mean--
[``(i) an analysis of proteins or metabolites that does not
detect genotypes, mutations, or chromosomal changes; or
[``(ii) an analysis of proteins or metabolites that is
directly related to a manifested disease, disorder, or
pathological condition that could reasonably be detected by a
health care professional with appropriate training and
expertise in the field of medicine involved.
[``(18) Genetic services.--The term `genetic services'
means--
[``(A) a genetic test;
[``(B) genetic counseling (such as obtaining, interpreting,
or assessing genetic information); or
[``(C) genetic education.''.
[(b) Amendment Relating to the Individual Market.--
[(1) In general.--The first subpart 3 of part B of title
XXVII of the Public Health Service Act (42 U.S.C. 300gg-51 et
seq.) (relating to other requirements) is amended--
[(A) by redesignating such subpart as subpart 2; and
[(B) by adding at the end the following:
[``SEC. 2753. PROHIBITION OF HEALTH DISCRIMINATION ON THE
BASIS OF GENETIC INFORMATION.
[``(a) Prohibition on Genetic Information as a Condition of
Eligibility.--A health insurance issuer offering health
insurance coverage in the individual market may not establish
rules for the eligibility (including continued eligibility)
of any individual to enroll in individual health insurance
coverage based on genetic information (including information
about a request for or receipt of genetic services by an
individual or family member of such individual).
[``(b) Prohibition on Genetic Information in Setting
Premium Rates.--A health insurance issuer offering health
insurance coverage in the individual market shall not adjust
premium or contribution amounts for an individual on the
basis of genetic information concerning the individual or a
family member of the individual (including information about
a request for or receipt of genetic services by an individual
or family member of such individual).
[``(c) Genetic Testing.--
[``(1) Limitation on requesting or requiring genetic
testing.--A health insurance issuer offering health insurance
coverage in the individual market shall not request or
require an individual or a family member of such individual
to undergo a genetic test.
[``(2) Rule of construction.--Nothing in this part shall be
construed to--
[``(A) limit the authority of a health care professional
who is providing health care services with respect to an
individual to request that such individual or a family member
of such individual undergo a genetic test;
[``(B) limit the authority of a health care professional
who is employed by or affiliated with a health insurance
issuer and who is providing health care services to an
individual as part of a bona fide wellness program to notify
such individual of the availability of a genetic test or to
provide information to such individual regarding such genetic
test; or
[``(C) authorize or permit a health care professional to
require that an individual undergo a genetic test.''.
[(2) Remedies and enforcement.--Section 2761(b) of the
Public Health Service Act (42 U.S.C. 300gg-61)(b)) is amended
to read as follows:
[``(b) Secretarial Enforcement Authority.--The Secretary
shall have the same authority in relation to enforcement of
the provisions of this part with respect to issuers of health
insurance coverage in the individual market in a State as the
Secretary has under section 2722(b)(2), and section
2722(b)(3) with respect to violations of genetic
nondiscrimination provisions, in relation to the enforcement
of the provisions of part A with respect to issuers of health
insurance coverage in the small group market in the State.''.
[(c) Elimination of Option of Non-Federal Governmental
Plans to Be Excepted From Requirements Concerning Genetic
Information.--Section 2721(b)(2) of the Public
[[Page S1462]]
Health Service Act (42 U.S. C. 300gg-21(b)(2)) is amended--
[(1) in subparagraph (A), by striking ``If the plan
sponsor'' and inserting ``Except as provided in subparagraph
(D), if the plan sponsor''; and
[(2) by adding at the end the following:
[``(D) Election not applicable to requirements concerning
genetic information.--The election described in subparagraph
(A) shall not be available with respect to the provisions of
subsections (a)(1)(F) and (c) of section 2702 and the
provisions of section 2702(b) to the extent that such
provisions apply to genetic information (or information about
a request for or the receipt of genetic services by an
individual or a family member of such individual).''.
[(d) Regulations and Effective Date.--
[(1) Regulations.--Not later than 1 year after the date of
enactment of this title, the Secretary of Labor and the
Secretary of Health and Human Services (as the case may be)
shall issue final regulations in an accessible format to
carry out the amendments made by this section.
[(2) Effective date.--The amendments made by this section
shall apply--
[(A) with respect to group health plans, and health
insurance coverage offered in connection with group health
plans, for plan years beginning after the date that is 18
months after the date of enactment of this title; and
[(B) with respect to health insurance coverage offered,
sold, issued, renewed, in effect, or operated in the
individual market after the date that is 18 months after the
date of enactment of this title.
[SEC. 103. AMENDMENTS TO THE INTERNAL REVENUE CODE OF 1986.
[(a) Prohibition of Health Discrimination on the Basis of
Genetic Information or Genetic Services.--
[(1) No enrollment restriction for genetic services.--
Section 9802(a)(1)(F) of the Internal Revenue Code of 1986 is
amended by inserting before the period the following:
``(including information about a request for or receipt of
genetic services by an individual or family member of such
individual)''.
[(2) No discrimination in group premiums based on genetic
information.--Section 9802(b) of the Internal Revenue Code of
1986 is amended--
[(A) in paragraph (2)(A), by inserting before the semicolon
the following: ``, except as provided in paragraph (3)''; and
[(B) by adding at the end the following:
[``(3) No discrimination in group premiums based on genetic
information.--For purposes of this section, a group health
plan shall not adjust premium or contribution amounts for a
group on the basis of genetic information concerning an
individual in the group or a family member of the individual
(including information about a request for or receipt of
genetic services by an individual or family member of such
individual).''.
[(b) Limitations on Genetic Testing.--Section 9802 of the
Internal Revenue Code of 1986 is amended by adding at the end
the following:
[``(d) Genetic Testing and Genetic Services.--
[``(1) Limitation on requesting or requiring genetic
testing.--A group health plan shall not request or require an
individual or a family member of such individual to undergo a
genetic test.
[``(2) Rule of construction.--Nothing in this part shall be
construed to--
[``(A) limit the authority of a health care professional
who is providing health care services with respect to an
individual to request that such individual or a family member
of such individual undergo a genetic test;
[``(B) limit the authority of a health care professional
who is employed by or affiliated with a group health plan and
who is providing health care services to an individual as
part of a bona fide wellness program to notify such
individual of the availability of a genetic test or to
provide information to such individual regarding such genetic
test; or
[``(C) authorize or permit a health care professional to
require that an individual undergo a genetic test.
[``(e) Application to All Plans.--The provisions of
subsections (a)(1)(F), (b)(3), and (d) shall apply to group
health plans and health insurance issuers without regard to
section 9831(a)(2).''.
[(c) Definitions.--Section 9832(d) of the Internal Revenue
Code of 1986 is amended by adding at the end the following:
[``(6) Family member.--The term `family member' means with
respect to an individual--
[``(A) the spouse of the individual;
[``(B) a dependent child of the individual, including a
child who is born to or placed for adoption with the
individual; and
[``(C) all other individuals related by blood to the
individual or the spouse or child described in subparagraph
(A) or (B).
[``(7) Genetic services.--The term `genetic services'
means--
[``(A) a genetic test;
[``(B) genetic counseling (such as obtaining, interpreting,
or assessing genetic information); or
[``(C) genetic education.
[``(8) Genetic information.--
[``(A) In general.--Except as provided in subparagraph (B),
the term `genetic information' means information about--
[``(i) an individual's genetic tests;
[``(ii) the genetic tests of family members of the
individual; or
[``(iii) the occurrence of a disease or disorder in family
members of the individual.
[``(B) Exclusions.--The term `genetic information' shall
not include information about the sex or age of an
individual.
[``(9) Genetic test.--
[``(A) In general.--The term `genetic test' means an
analysis of human DNA, RNA, chromosomes, proteins, or
metabolites, that detects genotypes, mutations, or
chromosomal changes.
[``(B) Exceptions.--The term `genetic test' does not mean--
[``(i) an analysis of proteins or metabolites that does not
detect genotypes, mutations, or chromosomal changes; or
[``(ii) an analysis of proteins or metabolites that is
directly related to a manifested disease, disorder, or
pathological condition that could reasonably be detected by a
health care professional with appropriate training and
expertise in the field of medicine involved.''.
[(d) Regulations and Effective Date.--
[(1) Regulations.--Not later than 1 year after the date of
enactment of this title, the Secretary of the Treasury shall
issue final regulations in an accessible format to carry out
the amendments made by this section.
[(2) Effective date.--The amendments made by this section
shall apply with respect to group health plans for plan years
beginning after the date that is 18 months after the date of
enactment of this title.
[SEC. 104. AMENDMENTS TO TITLE XVIII OF THE SOCIAL SECURITY
ACT RELATING TO MEDIGAP.
[(a) Nondiscrimination.--
[(1) In general.--Section 1882(s)(2) of the Social Security
Act (42 U.S.C. 1395ss(s)(2)) is amended by adding at the end
the following:
[``(E)(i) An issuer of a medicare supplemental policy shall
not deny or condition the issuance or effectiveness of the
policy, and shall not discriminate in the pricing of the
policy (including the adjustment of premium rates) of an
eligible individual on the basis of genetic information
concerning the individual (or information about a request
for, or the receipt of, genetic services by such individual
or family member of such individual).
[``(ii) For purposes of clause (i), the terms `family
member', `genetic services', and `genetic information' shall
have the meanings given such terms in subsection (v).''.
[(2) Effective date.--The amendment made by paragraph (1)
shall apply with respect to a policy for policy years
beginning after the date that is 18 months after the date of
enactment of this Act.
[(b) Limitations on Genetic Testing.--
[(1) In general.--Section 1882 of the Social Security Act
(42 U.S.C. 1395ss) is amended by adding at the end the
following:
[``(v) Limitations on Genetic Testing.--
[``(1) Genetic testing.--
[``(A) Limitation on requesting or requiring genetic
testing.--An issuer of a medicare supplemental policy shall
not request or require an individual or a family member of
such individual to undergo a genetic test.
[``(B) Rule of construction.--Nothing in this title shall
be construed to--
[``(i) limit the authority of a health care professional
who is providing health care services with respect to an
individual to request that such individual or a family member
of such individual undergo a genetic test;
[``(ii) limit the authority of a health care professional
who is employed by or affiliated with an issuer of a medicare
supplemental policy and who is providing health care services
to an individual as part of a bona fide wellness program to
notify such individual of the availability of a genetic test
or to provide information to such individual regarding such
genetic test; or
[``(iii) authorize or permit a health care professional to
require that an individual undergo a genetic test.
[``(2) Definitions.--In this subsection:
[``(A) Family member.--The term `family member' means with
respect to an individual--
[``(i) the spouse of the individual;
[``(ii) a dependent child of the individual, including a
child who is born to or placed for adoption with the
individual; or
[``(iii) any other individuals related by blood to the
individual or to the spouse or child described in clause (i)
or (ii).
[``(B) Genetic information.--
[``(i) In general.--Except as provided in clause (ii), the
term `genetic information' means information about--
[``(I) an individual's genetic tests;
[``(II) the genetic tests of family members of the
individual; or
[``(III) the occurrence of a disease or disorder in family
members of the individual.
[``(ii) Exclusions.--The term `genetic information' shall
not include information about the sex or age of an
individual.
[``(C) Genetic test.--
[``(i) In general.--The term `genetic test' means an
analysis of human DNA, RNA, chromosomes, proteins, or
metabolites, that detects genotypes, mutations, or
chromosomal changes.
[``(ii) Exceptions.--The term `genetic test' does not
mean--
[``(I) an analysis of proteins or metabolites that does not
detect genotypes, mutations, or chromosomal changes; or
[``(II) an analysis of proteins or metabolites that is
directly related to a manifested disease, disorder, or
pathological condition that could reasonably be detected by a
health care professional with appropriate
[[Page S1463]]
training and expertise in the field of medicine involved.
[``(D) Genetic services.--The term `genetic services'
means--
[``(i) a genetic test;
[``(ii) genetic counseling (such as obtaining,
interpreting, or assessing genetic information); or
[``(iii) genetic education.
[``(E) Issuer of a medicare supplemental policy.--The term
`issuer of a medicare supplemental policy' includes a third-
party administrator or other person acting for or on behalf
of such issuer.''.
[(2) Conforming amendment.--Section 1882(o) of the Social
Security Act (42 U.S.C. 1395ss(o)) is amended by adding at
the end the following:
[``(4) The issuer of the medicare supplemental policy
complies with subsection (s)(2)(E) and subsection (v).''.
[(3) Effective date.--The amendments made by this
subsection shall apply with respect to an issuer of a
medicare supplemental policy for policy years beginning on or
after the date that is 18 months after the date of enactment
of this Act.
[(c) Transition Provisions.--
[(1) In general.--If the Secretary of Health and Human
Services identifies a State as requiring a change to its
statutes or regulations to conform its regulatory program to
the changes made by this section, the State regulatory
program shall not be considered to be out of compliance with
the requirements of section 1882 of the Social Security Act
due solely to failure to make such change until the date
specified in paragraph (4).
[(2) NAIC standards.--If, not later than June 30, 2006, the
National Association of Insurance Commissioners (in this
subsection referred to as the ``NAIC'') modifies its NAIC
Model Regulation relating to section 1882 of the Social
Security Act (referred to in such section as the 1991 NAIC
Model Regulation, as subsequently modified) to conform to the
amendments made by this section, such revised regulation
incorporating the modifications shall be considered to be the
applicable NAIC model regulation (including the revised NAIC
model regulation and the 1991 NAIC Model Regulation) for the
purposes of such section.
[(3) Secretary standards.--If the NAIC does not make the
modifications described in paragraph (2) within the period
specified in such paragraph, the Secretary of Health and
Human Services shall, not later than October 1, 2006, make
the modifications described in such paragraph and such
revised regulation incorporating the modifications shall be
considered to be the appropriate regulation for the purposes
of such section.
[(4) Date specified.--
[(A) In general.--Subject to subparagraph (B), the date
specified in this paragraph for a State is the earlier of--
[(i) the date the State changes its statutes or regulations
to conform its regulatory program to the changes made by this
section, or
[(ii) October 1, 2006.
[(B) Additional legislative action required.--In the case
of a State which the Secretary identifies as--
[(i) requiring State legislation (other than legislation
appropriating funds) to conform its regulatory program to the
changes made in this section, but
[(ii) having a legislature which is not scheduled to meet
in 2006 in a legislative session in which such legislation
may be considered, the date specified in this paragraph is
the first day of the first calendar quarter beginning after
the close of the first legislative session of the State
legislature that begins on or after July 1, 2006. For
purposes of the previous sentence, in the case of a State
that has a 2-year legislative session, each year of such
session shall be deemed to be a separate regular session of
the State legislature.
[SEC. 105. PRIVACY AND CONFIDENTIALITY.
[(a) Applicability.--Except as provided in subsection (d),
the provisions of this section shall apply to group health
plans, health insurance issuers (including issuers in
connection with group health plans or individual health
coverage), and issuers of medicare supplemental policies,
without regard to--
[(1) section 732(a) of the Employee Retirement Income
Security Act of 1974 (29 U.S.C. 1191a(a));
[(2) section 2721(a) of the Public Health Service Act (42
U.S.C. 300gg-21(a)); and
[(3) section 9831(a)(2) of the Internal Revenue Code of
1986.
[(b) Compliance With Certain Confidentiality Standards With
Respect to Genetic Information.--
[(1) In general.--The regulations promulgated by the
Secretary of Health and Human Services under part C of title
XI of the Social Security Act (42 U.S.C. 1320d et seq.) and
section 264 of the Health Insurance Portability and
Accountability Act of 1996 (42 U.S.C. 1320d-2 note) shall
apply to the use or disclosure of genetic information.
[(2) Prohibition on underwriting and premium rating.--
Notwithstanding paragraph (1), a group health plan, a health
insurance issuer, or issuer of a medicare supplemental policy
shall not use or disclose genetic information (including
information about a request for or a receipt of genetic
services by an individual or family member of such
individual) for purposes of underwriting, determinations of
eligibility to enroll, premium rating, or the creation,
renewal or replacement of a plan, contract or coverage for
health insurance or health benefits.
[(c) Prohibition on Collection of Genetic Information.--
[(1) In general.--A group health plan, health insurance
issuer, or issuer of a medicare supplemental policy shall not
request, require, or purchase genetic information (including
information about a request for or a receipt of genetic
services by an individual or family member of such
individual) for purposes of underwriting, determinations of
eligibility to enroll, premium rating, or the creation,
renewal or replacement of a plan, contract or coverage for
health insurance or health benefits.
[(2) Limitation relating to the collection of genetic
information prior to enrollment.--A group health plan, health
insurance issuer, or issuer of a medicare supplemental policy
shall not request, require, or purchase genetic information
(including information about a request for or a receipt of
genetic services by an individual or family member of such
individual) concerning a participant, beneficiary, or
enrollee prior to the enrollment, and in connection with such
enrollment, of such individual under the plan, coverage, or
policy.
[(3) Incidental collection.--Where a group health plan,
health insurance issuer, or issuer of a medicare supplemental
policy obtains genetic information incidental to the
requesting, requiring, or purchasing of other information
concerning a participant, beneficiary, or enrollee, such
request, requirement, or purchase shall not be considered a
violation of this subsection if--
[(A) such request, requirement, or purchase is not in
violation of paragraph (1); and
[(B) any genetic information (including information about a
request for or receipt of genetic services) requested,
required, or purchased is not used or disclosed in violation
of subsection (b).
[(d) Application of Confidentiality Standards.--The
provisions of subsections (b) and (c) shall not apply--
[(1) to group health plans, health insurance issuers, or
issuers of medicare supplemental policies that are not
otherwise covered under the regulations promulgated by the
Secretary of Health and Human Services under part C of title
XI of the Social Security Act (42 U.S.C. 1320d et seq.) and
section 264 of the Health Insurance Portability and
Accountability Act of 1996 (42 U.S.C. 1320d-2 note); and
[(2) to genetic information that is not considered to be
individually-identifiable health information under the
regulations promulgated by the Secretary of Health and Human
Services under part C of title XI of the Social Security Act
(42 U.S.C. 1320d et seq.) and section 264 of the Health
Insurance Portability and Accountability Act of 1996 (42
U.S.C. 1320d-2 note).
[(e) Enforcement.--A group health plan, health insurance
issuer, or issuer of a medicare supplemental policy that
violates a provision of this section shall be subject to the
penalties described in sections 1176 and 1177 of the Social
Security Act (42 U.S.C. 1320d-5 and 1320d-6) in the same
manner and to the same extent that such penalties apply to
violations of part C of title XI of such Act.
[(f) Preemption.--
[(1) In general.--A provision or requirement under this
section or a regulation promulgated under this section shall
supersede any contrary provision of State law unless such
provision of State law imposes requirements, standards, or
implementation specifications that are more stringent than
the requirements, standards, or implementation specifications
imposed under this section or such regulations. No penalty,
remedy, or cause of action to enforce such a State law that
is more stringent shall be preempted by this section.
[(2) Rule of construction.--Nothing in paragraph (1) shall
be construed to establish a penalty, remedy, or cause of
action under State law if such penalty, remedy, or cause of
action is not otherwise available under such State law.
[(g) Coordination With Privacy Regulations.--The Secretary
shall implement and administer this section in a manner that
is consistent with the implementation and administration by
the Secretary of the regulations promulgated by the Secretary
of Health and Human Services under part C of title XI of the
Social Security Act (42 U.S.C. 1320d et seq.) and section 264
of the Health Insurance Portability and Accountability Act of
1996 (42 U.S.C. 1320d-2 note).
[(h) Definitions.--In this section:
[(1) Genetic information; genetic services.--The terms
``family member'', ``genetic information'', ``genetic
services'', and ``genetic test'' have the meanings given such
terms in section 2791 of the Public Health Service Act (42
U.S.C. 300gg-91), as amended by this Act.
[(2) Group health plan; health insurance issuer.--The terms
``group health plan'' and ``health insurance issuer'' include
only those plans and issuers that are covered under the
regulations described in subsection (d)(1).
[(3) Issuer of a medicare supplemental policy.--The term
``issuer of a medicare supplemental policy'' means an issuer
described in section 1882 of the Social Security Act (42
insert 1395ss).
[(4) Secretary.--The term ``Secretary'' means the Secretary
of Health and Human Services.
[SEC. 106. ASSURING COORDINATION.
[(a) In General.--Except as provided in subsection (b), the
Secretary of the Treasury, the Secretary of Health and Human
Services, and the Secretary of Labor shall
[[Page S1464]]
ensure, through the execution of an interagency memorandum of
understanding among such Secretaries, that--
[(1) regulations, rulings, and interpretations issued by
such Secretaries relating to the same matter over which two
or more such Secretaries have responsibility under this title
(and the amendments made by this title) are administered so
as to have the same effect at all times; and
[(2) coordination of policies relating to enforcing the
same requirements through such Secretaries in order to have a
coordinated enforcement strategy that avoids duplication of
enforcement efforts and assigns priorities in enforcement.
[(b) Authority of the Secretary.--The Secretary of Health
and Human Services has the sole authority to promulgate
regulations to implement section 105.
[SEC. 107. REGULATIONS; EFFECTIVE DATE.
[(a) Regulations.--Not later than 1 year after the date of
enactment of this title, the Secretary of Labor, the
Secretary of Health and Human Services, and the Secretary of
the Treasury shall issue final regulations in an accessible
format to carry out this title.
[(b) Effective Date.--Except as provided in section 104,
the amendments made by this title shall take effect on the
date that is 18 months after the date of enactment of this
Act.
[TITLE II--PROHIBITING EMPLOYMENT DISCRIMINATION ON THE BASIS OF
GENETIC INFORMATION
[SEC. 201. DEFINITIONS.
[In this title:
[(1) Commission.--The term ``Commission'' means the Equal
Employment Opportunity Commission as created by section 705
of the Civil Rights Act of 1964 (42 U.S.C. 2000e-4).
[(2) Employee; employer; employment agency; labor
organization; member.--
[(A) In general.--The term ``employee'' means--
[(i) an employee (including an applicant), as defined in
section 701(f) of the Civil Rights Act of 1964 (42 U.S.C.
2000e(f));
[(ii) a State employee (including an applicant) described
in section 304(a) of the Government Employee Rights Act of
1991 (42 U.S.C. 2000e-16c(a));
[(iii) a covered employee (including an applicant), as
defined in section 101 of the Congressional Accountability
Act of 1995 (2 U.S.C. 1301);
[(iv) a covered employee (including an applicant), as
defined in section 411(c) of title 3, United States Code; or
[(v) an employee or applicant to which section 717(a) of
the Civil Rights Act of 1964 (42 U.S.C. 2000e-16(a)) applies.
[(B) Employer.--The term ``employer'' means--
[(i) an employer (as defined in section 701(b) of the Civil
Rights Act of 1964 (42 U.S.C. 2000e(b));
[(ii) an entity employing a State employee described in
section 304(a) of the Government Employee Rights Act of 1991;
[(iii) an employing office, as defined in section 101 of
the Congressional Accountability Act of 1995;
[(iv) an employing office, as defined in section 411(c) of
title 3, United States Code; or
[(v) an entity to which section 717(a) of the Civil Rights
Act of 1964 applies.
[(C) Employment agency; labor organization.--The terms
``employment agency'' and ``labor organization'' have the
meanings given the terms in section 701 of the Civil Rights
Act of 1964 (42 U.S.C. 2000e).
[(D) Member.--The term ``member'', with respect to a labor
organization, includes an applicant for membership in a labor
organization.
[(3) Family member.--The term ``family member'' means with
respect to an individual--
[(A) the spouse of the individual;
[(B) a dependent child of the individual, including a child
who is born to or placed for adoption with the individual;
and
[(C) all other individuals related by blood to the
individual or the spouse or child described in subparagraph
(A) or (B).
[(4) Genetic information.--
[(A) In general.--Except as provided in subparagraph (B),
the term ``genetic information'' means information about--
[(i) an individual's genetic tests;
[(ii) the genetic tests of family members of the
individual; or
[(iii) the occurrence of a disease or disorder in family
members of the individual.
[(B) Exceptions.--The term ``genetic information'' shall
not include information about the sex or age of an
individual.
[(5) Genetic monitoring.--The term ``genetic monitoring''
means the periodic examination of employees to evaluate
acquired modifications to their genetic material, such as
chromosomal damage or evidence of increased occurrence of
mutations, that may have developed in the course of
employment due to exposure to toxic substances in the
workplace, in order to identify, evaluate, and respond to the
effects of or control adverse environmental exposures in the
workplace.
[(6) Genetic services.--The term ``genetic services''
means--
[(A) a genetic test;
[(B) genetic counseling (such as obtaining, interpreting or
assessing genetic information); or
[(C) genetic education.
[(7) Genetic test.--
[(A) In general.--The term ``genetic test'' means the
analysis of human DNA, RNA, chromosomes, proteins, or
metabolites, that detects genotypes, mutations, or
chromosomal changes.
[(B) Exception.--The term ``genetic test'' does not mean an
analysis of proteins or metabolites that does not detect
genotypes, mutations, or chromosomal changes.
[SEC. 202. EMPLOYER PRACTICES.
[(a) Use of Genetic Information.--It shall be an unlawful
employment practice for an employer--
[(1) to fail or refuse to hire or to discharge any
employee, or otherwise to discriminate against any employee
with respect to the compensation, terms, conditions, or
privileges of employment of the employee, because of genetic
information with respect to the employee (or information
about a request for or the receipt of genetic services by
such employee or family member of such employee); or
[(2) to limit, segregate, or classify the employees of the
employer in any way that would deprive or tend to deprive any
employee of employment opportunities or otherwise adversely
affect the status of the employee as an employee, because of
genetic information with respect to the employee (or
information about a request for or the receipt of genetic
services by such employee or family member of such employee).
[(b) Acquisition of Genetic Information.--It shall be an
unlawful employment practice for an employer to request,
require, or purchase genetic information with respect to an
employee or a family member of the employee (or information
about a request for the receipt of genetic services by such
employee or a family member of such employee) except--
[(1) where an employer inadvertently requests or requires
family medical history of the employee or family member of
the employee;
[(2) where--
[(A) health or genetic services are offered by the
employer, including such services offered as part of a bona
fide wellness program;
[(B) the employee provides prior, knowing, voluntary, and
written authorization;
[(C) only the employee (or family member if the family
member is receiving genetic services) and the licensed health
care professional or board certified genetic counselor
involved in providing such services receive individually
identifiable information concerning the results of such
services; and
[(D) any individually identifiable genetic information
provided under subparagraph (C) in connection with the
services provided under subparagraph (A) is only available
for purposes of such services and shall not be disclosed to
the employer except in aggregate terms that do not disclose
the identity of specific employees;
[(3) where an employer requests or requires family medical
history from the employee to comply with the certification
provisions of section 103 of the Family and Medical Leave Act
of 1993 (29 U.S.C. 2613) or such requirements under State
family and medical leave laws;
[(4) where an employer purchases documents that are
commercially and publicly available (including newspapers,
magazines, periodicals, and books, but not including medical
databases or court records) that include family medical
history; or
[(5) where the information involved is to be used for
genetic monitoring of the biological effects of toxic
substances in the workplace, but only if--
[(A) the employer provides written notice of the genetic
monitoring to the employee;
[(B)(i) the employee provides prior, knowing, voluntary,
and written authorization; or
[(ii) the genetic monitoring is required by Federal or
State law;
[(C) the employee is informed of individual monitoring
results;
[(D) the monitoring is in compliance with--
[(i) any Federal genetic monitoring regulations, including
any such regulations that may be promulgated by the Secretary
of Labor pursuant to the Occupational Safety and Health Act
of 1970 (29 U.S.C. 651 et seq.), the Federal Mine Safety and
Health Act of 1977 (30 U.S.C. 801 et seq.), or the Atomic
Energy Act of 1954 (42 U.S.C. 2011 et seq.); or
[(ii) State genetic monitoring regulations, in the case of
a State that is implementing genetic monitoring regulations
under the authority of the Occupational Safety and Health Act
of 1970 (29 U.S.C. 651 et seq.); and
[(E) the employer, excluding any licensed health care
professional or board certified genetic counselor that is
involved in the genetic monitoring program, receives the
results of the monitoring only in aggregate terms that do not
disclose the identity of specific employees;
[(c) Preservation of Protections.--In the case of
information to which any of paragraphs (1) through (5) of
subsection (b) applies, such information may not be used in
violation of paragraph (1) or (2) of subsection (a) or
treated or disclosed in a manner that violates section 206.
[SEC. 203. EMPLOYMENT AGENCY PRACTICES.
[(a) Use of Genetic Information.--It shall be an unlawful
employment practice for an employment agency--
[(1) to fail or refuse to refer for employment, or
otherwise to discriminate against, any individual because of
genetic information with respect to the individual (or
information about a request for or the receipt of genetic
services by such individual or family member of such
individual);
[(2) to limit, segregate, or classify individuals or fail
or refuse to refer for employment
[[Page S1465]]
any individual in any way that would deprive or tend to
deprive any individual of employment opportunities, or
otherwise adversely affect the status of the individual as an
employee, because of genetic information with respect to the
individual (or information about a request for or the receipt
of genetic services by such individual or family member of
such individual); or
[(3) to cause or attempt to cause an employer to
discriminate against an individual in violation of this
title.
[(b) Acquisition of Genetic Information.--It shall be an
unlawful employment practice for an employment agency to
request, require, or purchase genetic information with
respect to an individual or a family member of the individual
(or information about a request for the receipt of genetic
services by such individual or a family member of such
individual) except--
[(1) where an employment agency inadvertently requests or
requires family medical history of the individual or family
member of the individual;
[(2) where--
[(A) health or genetic services are offered by the
employment agency, including such services offered as part of
a bona fide wellness program;
[(B) the individual provides prior, knowing, voluntary, and
written authorization;
[(C) only the individual (or family member if the family
member is receiving genetic services) and the licensed health
care professional or board certified genetic counselor
involved in providing such services receive individually
identifiable information concerning the results of such
services; and
[(D) any individually identifiable genetic information
provided under subparagraph (C) in connection with the
services provided under subparagraph (A) is only available
for purposes of such services and shall not be disclosed to
the employment agency except in aggregate terms that do not
disclose the identity of specific individuals;
[(3) where an employment agency requests or requires family
medical history from the individual to comply with the
certification provisions of section 103 of the Family and
Medical Leave Act of 1993 (29 U.S.C. 2613) or such
requirements under State family and medical leave laws;
[(4) where an employment agency purchases documents that
are commercially and publicly available (including
newspapers, magazines, periodicals, and books, but not
including medical databases or court records) that include
family medical history; or
[(5) where the information involved is to be used for
genetic monitoring of the biological effects of toxic
substances in the workplace, but only if--
[(A) the employment agency provides written notice of the
genetic monitoring to the individual;
[(B)(i) the individual provides prior, knowing, voluntary,
and written authorization; or
[(ii) the genetic monitoring is required by Federal or
State law;
[(C) the individual is informed of individual monitoring
results;
[(D) the monitoring is in compliance with--
[(i) any Federal genetic monitoring regulations, including
any such regulations that may be promulgated by the Secretary
of Labor pursuant to the Occupational Safety and Health Act
of 1970 (29 U.S.C. 651 et seq.), the Federal Mine Safety and
Health Act of 1977 (30 U.S.C. 801 et seq.), or the Atomic
Energy Act of 1954 (42 U.S.C. 2011 et seq.); or
[(ii) State genetic monitoring regulations, in the case of
a State that is implementing genetic monitoring regulations
under the authority of the Occupational Safety and Health Act
of 1970 (29 U.S.C. 651 et seq.); and
[(E) the employment agency, excluding any licensed health
care professional or board certified genetic counselor that
is involved in the genetic monitoring program, receives the
results of the monitoring only in aggregate terms that do not
disclose the identity of specific individuals;
[(c) Preservation of Protections.--In the case of
information to which any of paragraphs (1) through (5) of
subsection (b) applies, such information may not be used in
violation of paragraph (1) or (2) of subsection (a) or
treated or disclosed in a manner that violates section 206.
[SEC. 204. LABOR ORGANIZATION PRACTICES.
[(a) Use of Genetic Information.--It shall be an unlawful
employment practice for a labor organization--
[(1) to exclude or to expel from the membership of the
organization, or otherwise to discriminate against, any
member because of genetic information with respect to the
member (or information about a request for or the receipt of
genetic services by such member or family member of such
member);
[(2) to limit, segregate, or classify the members of the
organization, or fail or refuse to refer for employment any
member, in any way that would deprive or tend to deprive any
member of employment opportunities, or otherwise adversely
affect the status of the member as an employee, because of
genetic information with respect to the member (or
information about a request for or the receipt of genetic
services by such member or family member of such member); or
[(3) to cause or attempt to cause an employer to
discriminate against a member in violation of this title.
[(b) Acquisition of Genetic Information.--It shall be an
unlawful employment practice for a labor organization to
request, require, or purchase genetic information with
respect to a member or a family member of the member (or
information about a request for the receipt of genetic
services by such member or a family member of such member)
except--
[(1) where a labor organization inadvertently requests or
requires family medical history of the member or family
member of the member;
[(2) where--
[(A) health or genetic services are offered by the labor
organization, including such services offered as part of a
bona fide wellness program;
[(B) the member provides prior, knowing, voluntary, and
written authorization;
[(C) only the member (or family member if the family member
is receiving genetic services) and the licensed health care
professional or board certified genetic counselor involved in
providing such services receive individually identifiable
information concerning the results of such services; and
[(D) any individually identifiable genetic information
provided under subparagraph (C) in connection with the
services provided under subparagraph (A) is only available
for purposes of such services and shall not be disclosed to
the labor organization except in aggregate terms that do not
disclose the identity of specific members;
[(3) where a labor organization requests or requires family
medical history from the members to comply with the
certification provisions of section 103 of the Family and
Medical Leave Act of 1993 (29 U.S.C. 2613) or such
requirements under State family and medical leave laws;
[(4) where a labor organization purchases documents that
are commercially and publicly available (including
newspapers, magazines, periodicals, and books, but not
including medical databases or court records) that include
family medical history; or
[(5) where the information involved is to be used for
genetic monitoring of the biological effects of toxic
substances in the workplace, but only if--
[(A) the labor organization provides written notice of the
genetic monitoring to the member;
[(B)(i) the member provides prior, knowing, voluntary, and
written authorization; or
[(ii) the genetic monitoring is required by Federal or
State law;
[(C) the member is informed of individual monitoring
results;
[(D) the monitoring is in compliance with--
[(i) any Federal genetic monitoring regulations, including
any such regulations that may be promulgated by the Secretary
of Labor pursuant to the Occupational Safety and Health Act
of 1970 (29 U.S.C. 651 et seq.), the Federal Mine Safety and
Health Act of 1977 (30 U.S.C. 801 et seq.), or the Atomic
Energy Act of 1954 (42 U.S.C. 2011 et seq.); or
[(ii) State genetic monitoring regulations, in the case of
a State that is implementing genetic monitoring regulations
under the authority of the Occupational Safety and Health Act
of 1970 (29 U.S.C. 651 et seq.); and
[(E) the labor organization, excluding any licensed health
care professional or board certified genetic counselor that
is involved in the genetic monitoring program, receives the
results of the monitoring only in aggregate terms that do not
disclose the identity of specific members;
[(c) Preservation of Protections.--In the case of
information to which any of paragraphs (1) through (5) of
subsection (b) applies, such information may not be used in
violation of paragraph (1) or (2) of subsection (a) or
treated or disclosed in a manner that violates section 206.
[SEC. 205. TRAINING PROGRAMS.
[(a) Use of Genetic Information.--It shall be an unlawful
employment practice for any employer, labor organization, or
joint labor-management committee controlling apprenticeship
or other training or retraining, including on-the-job
training programs--
[(1) to discriminate against any individual because of
genetic information with respect to the individual (or
information about a request for or the receipt of genetic
services by such individual or a family member of such
individual) in admission to, or employment in, any program
established to provide apprenticeship or other training or
retraining;
[(2) to limit, segregate, or classify the applicants for or
participants in such apprenticeship or other training or
retraining, or fail or refuse to refer for employment any
individual, in any way that would deprive or tend to deprive
any individual of employment opportunities, or otherwise
adversely affect the status of the individual as an employee,
because of genetic information with respect to the individual
(or information about a request for or receipt of genetic
services by such individual or family member of such
individual); or
[(3) to cause or attempt to cause an employer to
discriminate against an applicant for or a participant in
such apprenticeship or other training or retraining in
violation of this title.
[(b) Acquisition of Genetic Information.--It shall be an
unlawful employment practice for an employer, labor
organization, or joint labor-management committee described
in subsection (a) to request, require, or purchase genetic
information with respect to an individual or a family member
of the individual (or information about a request
[[Page S1466]]
for the receipt of genetic services by such individual or a
family member of such individual) except--
[(1) where the employer, labor organization, or joint
labor-management committee inadvertently requests or requires
family medical history of the individual or family member of
the individual;
[(2) where--
[(A) health or genetic services are offered by the
employer, labor organization, or joint labor-management
committee, including such services offered as part of a bona
fide wellness program;
[(B) the individual provides prior, knowing, voluntary, and
written authorization;
[(C) only the individual (or family member if the family
member is receiving genetic services) and the licensed health
care professional or board certified genetic counselor
involved in providing such services receive individually
identifiable information concerning the results of such
services;
[(D) any individually identifiable genetic information
provided under subparagraph (C) in connection with the
services provided under subparagraph (A) is only available
for purposes of such services and shall not be disclosed to
the employer, labor organization, or joint labor-management
committee except in aggregate terms that do not disclose the
identity of specific individuals;
[(3) where the employer, labor organization, or joint
labor-management committee requests or requires family
medical history from the individual to comply with the
certification provisions of section 103 of the Family and
Medical Leave Act of 1993 (29 U.S.C. 2613) or such
requirements under State family and medical leave laws;
[(4) where the employer, labor organization, or joint
labor-management committee purchases documents that are
commercially and publicly available (including newspapers,
magazines, periodicals, and books, but not including medical
databases or court records) that include family medical
history; or
[(5) where the information involved is to be used for
genetic monitoring of the biological effects of toxic
substances in the workplace, but only if--
[(A) the employer, labor organization, or joint labor-
management committee provides written notice of the genetic
monitoring to the individual;
[(B)(i) the individual provides prior, knowing, voluntary,
and written authorization; or
[(ii) the genetic monitoring is required by Federal or
State law;
[(C) the individual is informed of individual monitoring
results;
[(D) the monitoring is in compliance with--
[(i) any Federal genetic monitoring regulations, including
any such regulations that may be promulgated by the Secretary
of Labor pursuant to the Occupational Safety and Health Act
of 1970 (29 U.S.C. 651 et seq.), the Federal Mine Safety and
Health Act of 1977 (30 U.S.C. 801 et seq.), or the Atomic
Energy Act of 1954 (42 U.S.C. 2011 et seq.); or
[(ii) State genetic monitoring regulations, in the case of
a State that is implementing genetic monitoring regulations
under the authority of the Occupational Safety and Health Act
of 1970 (29 U.S.C. 651 et seq.); and
[(E) the employer, labor organization, or joint labor-
management committee, excluding any licensed health care
professional or board certified genetic counselor that is
involved in the genetic monitoring program, receives the
results of the monitoring only in aggregate terms that do not
disclose the identity of specific individuals;
[(c) Preservation of Protections.--In the case of
information to which any of paragraphs (1) through (5) of
subsection (b) applies, such information may not be used in
violation of paragraph (1) or (2) of subsection (a) or
treated or disclosed in a manner that violates section 206.
[SEC. 206. CONFIDENTIALITY OF GENETIC INFORMATION.
[(a) Treatment of Information as Part of Confidential
Medical Record.--If an employer, employment agency, labor
organization, or joint labor-management committee possesses
genetic information about an employee or member (or
information about a request for or receipt of genetic
services by such employee or member or family member of such
employee or member), such information shall be maintained on
separate forms and in separate medical files and be treated
as a confidential medical record of the employee or member.
[(b) Limitation on Disclosure.--An employer, employment
agency, labor organization, or joint labor-management
committee shall not disclose genetic information concerning
an employee or member (or information about a request for or
receipt of genetic services by such employee or member or
family member of such employee or member) except--
[(1) to the employee (or family member if the family member
is receiving the genetic services) or member of a labor
organization at the request of the employee or member of such
organization;
[(2) to an occupational or other health researcher if the
research is conducted in compliance with the regulations and
protections provided for under part 46 of title 45, Code of
Federal Regulations;
[(3) in response to an order of a court, except that--
[(A) the employer, employment agency, labor organization,
or joint labor-management committee may disclose only the
genetic information expressly authorized by such order; and
[(B) if the court order was secured without the knowledge
of the employee or member to whom the information refers, the
employer, employment agency, labor organization, or joint
labor-management committee shall provide the employee or
member with adequate notice to challenge the court order;
[(4) to government officials who are investigating
compliance with this title if the information is relevant to
the investigation; or
[(5) to the extent that such disclosure is made in
connection with the employee's compliance with the
certification provisions of section 103 of the Family and
Medical Leave Act of 1993 (29 U.S.C. 2613) or such
requirements under State family and medical leave laws.
[SEC. 207. REMEDIES AND ENFORCEMENT.
[(a) Employees Covered by Title VII of the Civil Rights Act
of 1964.--
[(1) In general.--The powers, remedies, and procedures
provided in sections 705, 706, 707, 709, 710, and 711 of the
Civil Rights Act of 1964 (42 U.S.C. 2000e-4 et seq.) to the
Commission, the Attorney General, or any person, alleging a
violation of title VII of that Act (42 U.S.C. 2000e et seq.)
shall be the powers, remedies, and procedures this title
provides to the Commission, the Attorney General, or any
person, respectively, alleging an unlawful employment
practice in violation of this title against an employee
described in section 201(2)(A)(i), except as provided in
paragraphs (2) and (3).
[(2) Costs and fees.--The powers, remedies, and procedures
provided in subsections (b) and (c) of section 722 of the
Revised Statutes (42 U.S.C. 1988), shall be powers, remedies,
and procedures this title provides to the Commission, the
Attorney General, or any person, alleging such a practice.
[(3) Damages.--The powers, remedies, and procedures
provided in section 1977A of the Revised Statutes (42 U.S.C.
1981a), including the limitations contained in subsection
(b)(3) of such section 1977A, shall be powers, remedies, and
procedures this title provides to the Commission, the
Attorney General, or any person, alleging such a practice
(not an employment practice specifically excluded from
coverage under section 1977A(a)(1) of the Revised Statutes).
[(b) Employees Covered by Government Employee Rights Act of
1991.--
[(1) In general.--The powers, remedies, and procedures
provided in sections 302 and 304 of the Government Employee
Rights Act of 1991 (42 U.S.C. 2000e-16b, 2000e-16c) to the
Commission, or any person, alleging a violation of section
302(a)(1) of that Act (42 U.S.C. 2000e-16b(a)(1)) shall be
the powers, remedies, and procedures this title provides to
the Commission, or any person, respectively, alleging an
unlawful employment practice in violation of this title
against an employee described in section 201(2)(A)(ii),
except as provided in paragraphs (2) and (3).
[(2) Costs and fees.--The powers, remedies, and procedures
provided in subsections (b) and (c) of section 722 of the
Revised Statutes (42 U.S.C. 1988), shall be powers, remedies,
and procedures this title provides to the Commission, or any
person, alleging such a practice.
[(3) Damages.--The powers, remedies, and procedures
provided in section 1977A of the Revised Statutes (42 U.S.C.
1981a), including the limitations contained in subsection
(b)(3) of such section 1977A, shall be powers, remedies, and
procedures this title provides to the Commission, or any
person, alleging such a practice (not an employment practice
specifically excluded from coverage under section 1977A(a)(1)
of the Revised Statutes).
[(c) Employees Covered by Congressional Accountability Act
of 1995.--
[(1) In general.--The powers, remedies, and procedures
provided in the Congressional Accountability Act of 1995 (2
U.S.C. 1301 et seq.) to the Board (as defined in section 101
of that Act (2 U.S.C. 1301)), or any person, alleging a
violation of section 201(a)(1) of that Act (42 U.S.C.
1311(a)(1)) shall be the powers, remedies, and procedures
this title provides to that Board, or any person, alleging an
unlawful employment practice in violation of this title
against an employee described in section 201(2)(A)(iii),
except as provided in paragraphs (2) and (3).
[(2) Costs and fees.--The powers, remedies, and procedures
provided in subsections (b) and (c) of section 722 of the
Revised Statutes (42 U.S.C. 1988), shall be powers, remedies,
and procedures this title provides to that Board, or any
person, alleging such a practice.
[(3) Damages.--The powers, remedies, and procedures
provided in section 1977A of the Revised Statutes (42 U.S.C.
1981a), including the limitations contained in subsection
(b)(3) of such section 1977A, shall be powers, remedies, and
procedures this title provides to that Board, or any person,
alleging such a practice (not an employment practice
specifically excluded from coverage under section 1977A(a)(1)
of the Revised Statutes).
[(4) Other applicable provisions.--With respect to a claim
alleging a practice described in paragraph (1), title III of
the Congressional Accountability Act of 1995 (2 U.S.C. 1381
et seq.) shall apply in the same manner as such title applies
with respect to a claim alleging a violation of section
201(a)(1) of such Act (2 U.S.C. 1311(a)(1)).
[(d) Employees Covered by Chapter 5 of Title 3, United
States Code.--
[(1) In general.--The powers, remedies, and procedures
provided in chapter 5 of title 3, United States Code, to the
President, the Commission, the Merit Systems Protection
Board, or any person, alleging a violation of
[[Page S1467]]
section 411(a)(1) of that title, shall be the powers,
remedies, and procedures this title provides to the
President, the Commission, such Board, or any person,
respectively, alleging an unlawful employment practice in
violation of this title against an employee described in
section 201(2)(A)(iv), except as provided in paragraphs (2)
and (3).
[(2) Costs and fees.--The powers, remedies, and procedures
provided in subsections (b) and (c) of section 722 of the
Revised Statutes (42 U.S.C. 1988), shall be powers, remedies,
and procedures this title provides to the President, the
Commission, such Board, or any person, alleging such a
practice.
[(3) Damages.--The powers, remedies, and procedures
provided in section 1977A of the Revised Statutes (42 U.S.C.
1981a), including the limitations contained in subsection
(b)(3) of such section 1977A, shall be powers, remedies, and
procedures this title provides to the President, the
Commission, such Board, or any person, alleging such a
practice (not an employment practice specifically excluded
from coverage under section 1977A(a)(1) of the Revised
Statutes).
[(e) Employees Covered by Section 717 of the Civil Rights
Act of 1964.--
[(1) In general.--The powers, remedies, and procedures
provided in section 717 of the Civil Rights Act of 1964 (42
U.S.C. 2000e-16) to the Commission, the Attorney General, the
Librarian of Congress, or any person, alleging a violation of
that section shall be the powers, remedies, and procedures
this title provides to the Commission, the Attorney General,
the Librarian of Congress, or any person, respectively,
alleging an unlawful employment practice in violation of this
title against an employee or applicant described in section
201(2)(A)(v), except as provided in paragraphs (2) and (3).
[(2) Costs and fees.--The powers, remedies, and procedures
provided in subsections (b) and (c) of section 722 of the
Revised Statutes (42 U.S.C. 1988), shall be powers, remedies,
and procedures this title provides to the Commission, the
Attorney General, the Librarian of Congress, or any person,
alleging such a practice.
[(3) Damages.--The powers, remedies, and procedures
provided in section 1977A of the Revised Statutes (42 U.S.C.
1981a), including the limitations contained in subsection
(b)(3) of such section 1977A, shall be powers, remedies, and
procedures this title provides to the Commission, the
Attorney General, the Librarian of Congress, or any person,
alleging such a practice (not an employment practice
specifically excluded from coverage under section 1977A(a)(1)
of the Revised Statutes).
[(f) Definition.--In this section, the term ``Commission''
means the Equal Employment Opportunity Commission.
[SEC. 208. DISPARATE IMPACT.
[(a) General Rule.--Notwithstanding any other provision of
this Act, ``disparate impact'', as that term is used in
section 703(k) of the Civil Rights Act of 1964 (42 U.S.C.
2000e-d(k)), on the basis of genetic information does not
establish a cause of action under this Act.
[(b) Commission.--On the date that is 6 years after the
date of enactment of this Act, there shall be established a
commission, to be known as the Genetic Nondiscrimination
Study Commission (referred to in this section as the
``Commission'') to review the developing science of genetics
and to make recommendations to Congress regarding whether to
provide a disparate impact cause of action under this Act.
[(c) Membership.--
[(1) In general.--The Commission shall be composed of 8
members, of which--
[(A) 1 member shall be appointed by the Majority Leader of
the Senate;
[(B) 1 member shall be appointed by the Minority Leader of
the Senate;
[(C) 1 member shall be appointed by the Chairman of the
Committee on Health, Education, Labor, and Pensions of the
Senate;
[(D) 1 member shall be appointed by the ranking minority
member of the Committee on Health, Education, Labor, and
Pensions of the Senate;
[(E) 1 member shall be appointed by the Speaker of the
House of Representatives;
[(F) 1 member shall be appointed by the Minority Leader of
the House of Representatives;
[(G) 1 member shall be appointed by the Chairman of the
Committee on Education and the Workforce of the House of
Representatives; and
[(H) 1 member shall be appointed by the ranking minority
member of the Committee on Education and the Workforce of the
House of Representatives.
[(2) Compensation and expenses.--The members of the
Commission shall not receive compensation for the performance
of services for the Commission, but shall be allowed travel
expenses, including per diem in lieu of subsistence, at rates
authorized for employees of agencies under subchapter I of
chapter 57 of title 5, United States Code, while away from
their homes or regular places of business in the performance
of services for the Commission.
[(d) Administrative Provisions.--
[(1) Location.--The Commission shall be located in a
facility maintained by the Equal Employment Opportunity
Commission.
[(2) Detail of government employees.--Any Federal
Government employee may be detailed to the Commission without
reimbursement, and such detail shall be without interruption
or loss of civil service status or privilege.
[(3) Information from federal agencies.--The Commission may
secure directly from any Federal department or agency such
information as the Commission considers necessary to carry
out the provisions of this section. Upon request of the
Commission, the head of such department or agency shall
furnish such information to the Commission.
[(4) Hearings.--The Commission may hold such hearings, sit
and act at such times and places, take such testimony, and
receive such evidence as the Commission considers advisable
to carry out the objectives of this section, except that, to
the extent possible, the Commission shall use existing data
and research.
[(5) Postal services.--The Commission may use the United
States mails in the same manner and under the same conditions
as other departments and agencies of the Federal Government.
[(e) Report.--Not later than 1 year after all of the
members are appointed to the Commission under subsection
(c)(1), the Commission shall submit to Congress a report that
summarizes the findings of the Commission and makes such
recommendations for legislation as are consistent with this
Act.
[(f) Authorization of Appropriations.--There are authorized
to be appropriated to the Equal Employment Opportunity
Commission such sums as may be necessary to carry out this
section.
[SEC. 209. CONSTRUCTION.
[Nothing in this title shall be construed to--
[(1) limit the rights or protections of an individual under
the Americans with Disabilities Act of 1990 (42 U.S.C. 12101
et seq.), including coverage afforded to individuals under
section 102 of such Act (42 U.S.C. 12112), or under the
Rehabilitation Act of 1973 (29 U.S.C. 701 et seq.);
[(2)(A) limit the rights or protections of an individual to
bring an action under this title against an employer,
employment agency, labor organization, or joint labor-
management committee for a violation of this title; or
[(B) establish a violation under this title for an
employer, employment agency, labor organization, or joint
labor-management committee of a provision of the amendments
made by title I;
[(3) limit the rights or protections of an individual under
any other Federal or State statute that provides equal or
greater protection to an individual than the rights or
protections provided for under this title;
[(4) apply to the Armed Forces Repository of Specimen
Samples for the Identification of Remains;
[(5) limit or expand the protections, rights, or
obligations of employees or employers under applicable
workers' compensation laws;
[(6) limit the authority of a Federal department or agency
to conduct or sponsor occupational or other health research
that is conducted in compliance with the regulations
contained in part 46 of title 45, Code of Federal Regulations
(or any corresponding or similar regulation or rule); and
[(7) limit the statutory or regulatory authority of the
Occupational Safety and Health Administration or the Mine
Safety and Health Administration to promulgate or enforce
workplace safety and health laws and regulations.
[SEC. 210. MEDICAL INFORMATION THAT IS NOT GENETIC
INFORMATION.
[An employer, employment agency, labor organization, or
joint labor-management committee shall not be considered to
be in violation of this title based on the use, acquisition,
or disclosure of medical information that is not genetic
information about a manifested disease, disorder, or
pathological condition of an employee or member, including a
manifested disease, disorder, or pathological condition that
has or may have a genetic basis.
[SEC. 211. REGULATIONS.
[Not later than 1 year after the date of enactment of this
title, the Commission shall issue final regulations in an
accessible format to carry out this title.
[SEC. 212. AUTHORIZATION OF APPROPRIATIONS.
[There are authorized to be appropriated such sums as may
be necessary to carry out this title (except for section
208).
[SEC. 213. EFFECTIVE DATE.
[This title takes effect on the date that is 18 months
after the date of enactment of this Act.
TITLE III--MISCELLANEOUS PROVISION
[SEC. 301. SEVERABILITY.
[If any provision of this Act, an amendment made by this
Act, or the application of such provision or amendment to any
person or circumstance is held to be unconstitutional, the
remainder of this Act, the amendments made by this Act, and
the application of such provisions to any person or
circumstance shall not be affected thereby.]
SECTION 1. SHORT TITLE; TABLE OF CONTENTS.
(a) Short Title.--This Act may be cited as the ``Genetic
Information Nondiscrimination Act of 2005''.
(b) Table of Contents.--The table of contents of this Act
is as follows:
Sec. 1. Short title; table of contents.
Sec. 2. Findings.
TITLE I--GENETIC NONDISCRIMINATION IN HEALTH INSURANCE
Sec. 101. Amendments to Employee Retirement Income Security Act of
1974.
Sec. 102. Amendments to the Public Health Service Act.
Sec. 103. Amendments to the Internal Revenue Code of 1986.
[[Page S1468]]
Sec. 104. Amendments to title XVIII of the Social Security Act relating
to medigap.
Sec. 105. Privacy and confidentiality.
Sec. 106. Assuring coordination.
Sec. 107. Regulations; effective date.
TITLE II--PROHIBITING EMPLOYMENT DISCRIMINATION ON THE BASIS OF GENETIC
INFORMATION
Sec. 201. Definitions.
Sec. 202. Employer practices.
Sec. 203. Employment agency practices.
Sec. 204. Labor organization practices.
Sec. 205. Training programs.
Sec. 206. Confidentiality of genetic information.
Sec. 207. Remedies and enforcement.
Sec. 208. Disparate impact.
Sec. 209. Construction.
Sec. 210. Medical information that is not genetic information.
Sec. 211. Regulations.
Sec. 212. Authorization of appropriations.
Sec. 213. Effective date.
TITLE III--MISCELLANEOUS PROVISION
Sec. 301. Severability.
SEC. 2. FINDINGS.
Congress makes the following findings:
(1) Deciphering the sequence of the human genome and other
advances in genetics open major new opportunities for medical
progress. New knowledge about the genetic basis of illness
will allow for earlier detection of illnesses, often before
symptoms have begun. Genetic testing can allow individuals to
take steps to reduce the likelihood that they will contract a
particular disorder. New knowledge about genetics may allow
for the development of better therapies that are more
effective against disease or have fewer side effects than
current treatments. These advances give rise to the potential
misuse of genetic information to discriminate in health
insurance and employment.
(2) The early science of genetics became the basis of State
laws that provided for the sterilization of persons having
presumed genetic ``defects'' such as mental retardation,
mental disease, epilepsy, blindness, and hearing loss, among
other conditions. The first sterilization law was enacted in
the State of Indiana in 1907. By 1981, a majority of States
adopted sterilization laws to ``correct'' apparent genetic
traits or tendencies. Many of these State laws have since
been repealed, and many have been modified to include
essential constitutional requirements of due process and
equal protection. However, the current explosion in the
science of genetics, and the history of sterilization laws by
the States based on early genetic science, compels
Congressional action in this area.
(3) Although genes are facially neutral markers, many
genetic conditions and disorders are associated with
particular racial and ethnic groups and gender. Because some
genetic traits are most prevalent in particular groups,
members of a particular group may be stigmatized or
discriminated against as a result of that genetic
information. This form of discrimination was evident in the
1970s, which saw the advent of programs to screen and
identify carriers of sickle cell anemia, a disease which
afflicts African-Americans. Once again, State legislatures
began to enact discriminatory laws in the area, and in the
early 1970s began mandating genetic screening of all African
Americans for sickle cell anemia, leading to discrimination
and unnecessary fear. To alleviate some of this stigma,
Congress in 1972 passed the National Sickle Cell Anemia
Control Act, which withholds Federal funding from States
unless sickle cell testing is voluntary.
(4) Congress has been informed of examples of genetic
discrimination in the workplace. These include the use of
pre-employment genetic screening at Lawrence Berkeley
Laboratory, which led to a court decision in favor of the
employees in that case Norman-Bloodsaw v. Lawrence Berkeley
Laboratory (135 F.3d 1260, 1269 (9th Cir. 1998)). Congress
clearly has a compelling public interest in relieving the
fear of discrimination and in prohibiting its actual practice
in employment and health insurance.
(5) Federal law addressing genetic discrimination in health
insurance and employment is incomplete in both the scope and
depth of its protections. Moreover, while many States have
enacted some type of genetic non-discrimination law, these
laws vary widely with respect to their approach, application,
and level of protection. Congress has collected substantial
evidence that the American public and the medical community
find the existing patchwork of State and Federal laws to be
confusing and inadequate to protect them from discrimination.
Therefore Federal legislation establishing a national and
uniform basic standard is necessary to fully protect the
public from discrimination and allay their concerns about the
potential for discrimination, thereby allowing individuals to
take advantage of genetic testing, technologies, research,
and new therapies.
TITLE I--GENETIC NONDISCRIMINATION IN HEALTH INSURANCE
SEC. 101. AMENDMENTS TO EMPLOYEE RETIREMENT INCOME SECURITY
ACT OF 1974.
(a) Prohibition of Health Discrimination on the Basis of
Genetic Information or Genetic Services.--
(1) No enrollment restriction for genetic services.--
Section 702(a)(1)(F) of the Employee Retirement Income
Security Act of 1974 (29 U.S.C. 1182(a)(1)(F)) is amended by
inserting before the period the following: ``(including
information about a request for or receipt of genetic
services by an individual or family member of such
individual)''.
(2) No discrimination in group premiums based on genetic
information.--Section 702(b) of the Employee Retirement
Income Security Act of 1974 (29 U.S.C. 1182(b)) is amended--
(A) in paragraph (2)(A), by inserting before the semicolon
the following: ``except as provided in paragraph (3)''; and
(B) by adding at the end the following:
``(3) No discrimination in group premiums based on genetic
information.--For purposes of this section, a group health
plan, or a health insurance issuer offering group health
insurance coverage in connection with a group health plan,
shall not adjust premium or contribution amounts for a group
on the basis of genetic information concerning an individual
in the group or a family member of the individual (including
information about a request for or receipt of genetic
services by an individual or family member of such
individual).''.
(b) Limitations on Genetic Testing.--Section 702 of the
Employee Retirement Income Security Act of 1974 (29 U.S.C.
1182) is amended by adding at the end the following:
``(c) Genetic Testing.--
``(1) Limitation on requesting or requiring genetic
testing.--A group health plan, or a health insurance issuer
offering health insurance coverage in connection with a group
health plan, shall not request or require an individual or a
family member of such individual to undergo a genetic test.
``(2) Rule of construction.--Nothing in this part shall be
construed to--
``(A) limit the authority of a health care professional who
is providing health care services with respect to an
individual to request that such individual or a family member
of such individual undergo a genetic test;
``(B) limit the authority of a health care professional who
is employed by or affiliated with a group health plan or a
health insurance issuer and who is providing health care
services to an individual as part of a bona fide wellness
program to notify such individual of the availability of a
genetic test or to provide information to such individual
regarding such genetic test; or
``(C) authorize or permit a health care professional to
require that an individual undergo a genetic test.
``(d) Application to All Plans.--The provisions of
subsections (a)(1)(F), (b)(3), and (c) shall apply to group
health plans and health insurance issuers without regard to
section 732(a).''.
(c) Remedies and Enforcement.--Section 502 of the Employee
Retirement Income Security Act of 1974 (29 U.S.C. 1132) is
amended by adding at the end the following:
``(n) Enforcement of Genetic Nondiscrimination
Requirements.--
``(1) Injunctive relief for irreparable harm.--With respect
to any violation of subsection (a)(1)(F), (b)(3), or (c) of
section 702, a participant or beneficiary may seek relief
under subsection 502(a)(1)(B) prior to the exhaustion of
available administrative remedies under section 503 if it is
demonstrated to the court, by a preponderance of the
evidence, that the exhaustion of such remedies would cause
irreparable harm to the health of the participant or
beneficiary. Any determinations that already have been made
under section 503 in such case, or that are made in such case
while an action under this paragraph is pending, shall be
given due consideration by the court in any action under this
subsection in such case.
``(2) Equitable relief for genetic nondiscrimination.--
``(A) Reinstatement of benefits where equitable relief has
been awarded.--The recovery of benefits by a participant or
beneficiary under a civil action under this section may
include an administrative penalty under subparagraph (B) and
the retroactive reinstatement of coverage under the plan
involved to the date on which the participant or beneficiary
was denied eligibility for coverage if--
``(i) the civil action was commenced under subsection
(a)(1)(B); and
``(ii) the denial of coverage on which such civil action
was based constitutes a violation of subsection (a)(1)(F),
(b)(3), or (c) of section 702.
``(B) Administrative penalty.--
``(i) In general.--An administrator who fails to comply
with the requirements of subsection (a)(1)(F), (b)(3), or (c)
of section 702 with respect to a participant or beneficiary
may, in an action commenced under subsection (a)(1)(B), be
personally liable in the discretion of the court, for a
penalty in the amount not more than $100 for each day in the
noncompliance period.
``(ii) Noncompliance period.--For purposes of clause (i),
the term `noncompliance period' means the period--
``(I) beginning on the date that a failure described in
clause (i) occurs; and
``(II) ending on the date that such failure is corrected.
``(iii) Payment to participant or beneficiary.--A penalty
collected under this subparagraph shall be paid to the
participant or beneficiary involved.
``(3) Secretarial enforcement authority.--
``(A) General rule.--The Secretary has the authority to
impose a penalty on any failure of a group health plan to
meet the requirements of subsection (a)(1)(F), (b)(3), or (c)
of section 702.
``(B) Amount.--
``(i) In general.--The amount of the penalty imposed by
subparagraph (A) shall be $100 for each day in the
noncompliance period with respect to each individual to whom
such failure relates.
``(ii) Noncompliance period.--For purposes of this
paragraph, the term `noncompliance period' means, with
respect to any failure, the period--
``(I) beginning on the date such failure first occurs; and
``(II) ending on the date such failure is corrected.
``(C) Minimum penalties where failure discovered.--
Notwithstanding clauses (i) and (ii) of subparagraph (D):
[[Page S1469]]
``(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.''.
(d) Definitions.--Section 733(d) of the Employee Retirement
Income Security Act of 1974 (29 U.S.C. 1191b(d)) is amended
by adding at the end the following:
``(5) Family member.--The term `family member' means with
respect to an individual--
``(A) the spouse of the individual;
``(B) a dependent child of the individual, including a
child who is born to or placed for adoption with the
individual; and
``(C) all other individuals related by blood to the
individual or the spouse or child described in subparagraph
(A) or (B).
``(6) Genetic information.--
``(A) In general.--Except as provided in subparagraph (B),
the term `genetic information' means information about--
``(i) an individual's genetic tests;
``(ii) the genetic tests of family members of the
individual; or
``(iii) the occurrence of a disease or disorder in family
members of the individual.
``(B) Exclusions.--The term `genetic information' shall not
include information about the sex or age of an individual.
``(7) Genetic test.--
``(A) In general.--The term `genetic test' means an
analysis of human DNA, RNA, chromosomes, proteins, or
metabolites, that detects genotypes, mutations, or
chromosomal changes.
``(B) Exceptions.--The term `genetic test' does not mean--
``(i) an analysis of proteins or metabolites that does not
detect genotypes, mutations, or chromosomal changes; or
``(ii) an analysis of proteins or metabolites that is
directly related to a manifested disease, disorder, or
pathological condition that could reasonably be detected by a
health care professional with appropriate training and
expertise in the field of medicine involved.
``(8) Genetic services.--The term `genetic services'
means--
``(A) a genetic test;
``(B) genetic counseling (such as obtaining, interpreting,
or assessing genetic information); or
``(C) genetic education.''.
(e) Regulations and Effective Date.--
(1) Regulations.--Not later than 1 year after the date of
enactment of this title, the Secretary of Labor shall issue
final regulations in an accessible format to carry out the
amendments made by this section.
(2) Effective date.--The amendments made by this section
shall apply with respect to group health plans for plan years
beginning after the date that is 18 months after the date of
enactment of this title.
SEC. 102. AMENDMENTS TO THE PUBLIC HEALTH SERVICE ACT.
(a) Amendments Relating to the Group Market.--
(1) Prohibition of health discrimination on the basis of
genetic information or genetic services.--
(A) No enrollment restriction for genetic services.--
Section 2702(a)(1)(F) of the Public Health Service Act (42
U.S.C. 300gg-1(a)(1)(F)) is amended by inserting before the
period the following: ``(including information about a
request for or receipt of genetic services by an individual
or family member of such individual)''.
(B) No discrimination in group premiums based on genetic
information.--Section 2702(b) of the Public Health Service
Act (42 U.S.C. 300gg-1(b)) is amended--
(i) in paragraph (2)(A), by inserting before the semicolon
the following: ``, except as provided in paragraph (3)''; and
(ii) by adding at the end the following:
``(3) No discrimination in group premiums based on genetic
information.--For purposes of this section, a group health
plan, or a health insurance issuer offering group health
insurance coverage in connection with a group health plan,
shall not adjust premium or contribution amounts for a group
on the basis of genetic information concerning an individual
in the group or a family member of the individual (including
information about a request for or receipt of genetic
services by an individual or family member of such
individual).''.
(2) Limitations on genetic testing.--Section 2702 of the
Public Health Service Act (42 U.S.C. 300gg-1) is amended by
adding at the end the following:
``(c) Genetic Testing.--
``(1) Limitation on requesting or requiring genetic
testing.--A group health plan, or a health insurance issuer
offering health insurance coverage in connection with a group
health plan, shall not request or require an individual or a
family member of such individual to undergo a genetic test.
``(2) Rule of construction.--Nothing in this part shall be
construed to--
``(A) limit the authority of a health care professional who
is providing health care services with respect to an
individual to request that such individual or a family member
of such individual undergo a genetic test;
``(B) limit the authority of a health care professional who
is employed by or affiliated with a group health plan or a
health insurance issuer and who is providing health care
services to an individual as part of a bona fide wellness
program to notify such individual of the availability of a
genetic test or to provide information to such individual
regarding such genetic test; or
``(C) authorize or permit a health care professional to
require that an individual undergo a genetic test.
``(d) Application to All Plans.--The provisions of
subsections (a)(1)(F), (b)(3), and (c) shall apply to group
health plans and health insurance issuers without regard to
section 2721(a).''.
(3) Remedies and enforcement.--Section 2722(b) of the
Public Health Service Act (42 U.S.C. 300gg-22)(b)) is amended
by adding at the end the following:
``(3) Enforcement authority relating to genetic
discrimination.--
``(A) General rule.--In the cases described in paragraph
(1), notwithstanding the provisions of paragraph (2)(C), the
following provisions shall apply with respect to an action
under this subsection by the Secretary with respect to any
failure of a health insurance issuer in connection with a
group health plan, to meet the requirements of subsection
(a)(1)(F), (b)(3), or (c) of section 2702.
``(B) Amount.--
``(i) In general.--The amount of the penalty imposed under
this paragraph shall be $100 for each day in the
noncompliance period with respect to each individual to whom
such failure relates.
``(ii) Noncompliance period.--For purposes of this
paragraph, the term `noncompliance period' means, with
respect to any failure, the period--
``(I) beginning on the date such failure first occurs; and
``(II) ending on the date such failure is corrected.
``(C) Minimum penalties where failure discovered.--
Notwithstanding clauses (i) and (ii) of subparagraph (D):
``(i) In general.--In the case of 1 or more failures with
respect to an individual--
``(I) which are not corrected before the date on which the
plan receives a notice from the Secretary of such violation;
and
``(II) which occurred or continued during the period
involved;
the amount of penalty imposed by subparagraph (A) by reason
of such failures with respect to such individual shall not be
less than $2,500.
``(ii) Higher minimum penalty where violations are more
than de minimis.--To the extent violations for which any
person is liable under this paragraph for any year are more
than de minimis, clause (i) shall be applied by substituting
`$15,000' for `$2,500' with respect to such person.
``(D) Limitations.--
``(i) Penalty not to apply where failure not discovered
exercising reasonable diligence.--No penalty shall be imposed
by subparagraph (A) on any failure during any period for
which it is established to the satisfaction of the Secretary
that the person otherwise liable for such penalty did not
know, and exercising reasonable diligence would not have
known, that such failure existed.
``(ii) Penalty not to apply to failures corrected within
certain periods.--No penalty shall be imposed by subparagraph
(A) on any failure if--
``(I) such failure was due to reasonable cause and not to
willful neglect; and
``(II) such failure is corrected during the 30-day period
beginning on the first date the person otherwise liable for
such penalty knew, or exercising reasonable diligence would
have known, that such failure existed.
``(iii) Overall limitation for unintentional failures.--In
the case of failures which are due to reasonable cause and
not to willful neglect, the penalty imposed by subparagraph
(A) for failures shall not exceed the amount equal to the
lesser of--
``(I) 10 percent of the aggregate amount paid or incurred
by the employer (or predecessor employer) during the
preceding taxable year for group health plans; or
[[Page S1470]]
``(II) $500,000.
``(E) Waiver by secretary.--In the case of a failure which
is due to reasonable cause and not to willful neglect, the
Secretary may waive part or all of the penalty imposed by
subparagraph (A) to the extent that the payment of such
penalty would be excessive relative to the failure
involved.''.
(4) Definitions.--Section 2791(d) of the Public Health
Service Act (42 U.S.C. 300gg-91(d)) is amended by adding at
the end the following:
``(15) Family member.--The term `family member' means with
respect to an individual--
``(A) the spouse of the individual;
``(B) a dependent child of the individual, including a
child who is born to or placed for adoption with the
individual; and
``(C) all other individuals related by blood to the
individual or the spouse or child described in subparagraph
(A) or (B).
``(16) Genetic information.--
``(A) In general.--Except as provided in subparagraph (B),
the term `genetic information' means information about--
``(i) an individual's genetic tests;
``(ii) the genetic tests of family members of the
individual; or
``(iii) the occurrence of a disease or disorder in family
members of the individual.
``(B) Exclusions.--The term `genetic information' shall not
include information about the sex or age of an individual.
``(17) Genetic test.--
``(A) In general.--The term `genetic test' means an
analysis of human DNA, RNA, chromosomes, proteins, or
metabolites, that detects genotypes, mutations, or
chromosomal changes.
``(B) Exceptions.--The term `genetic test' does not mean--
``(i) an analysis of proteins or metabolites that does not
detect genotypes, mutations, or chromosomal changes; or
``(ii) an analysis of proteins or metabolites that is
directly related to a manifested disease, disorder, or
pathological condition that could reasonably be detected by a
health care professional with appropriate training and
expertise in the field of medicine involved.
``(18) Genetic services.--The term `genetic services'
means--
``(A) a genetic test;
``(B) genetic counseling (such as obtaining, interpreting,
or assessing genetic information); or
``(C) genetic education.''.
(b) Amendment Relating to the Individual Market.--
(1) In general.--The first subpart 3 of part B of title
XXVII of the Public Health Service Act (42 U.S.C. 300gg-51 et
seq.) (relating to other requirements) is amended--
(A) by redesignating such subpart as subpart 2; and
(B) by adding at the end the following:
``SEC. 2753. PROHIBITION OF HEALTH DISCRIMINATION ON THE
BASIS OF GENETIC INFORMATION.
``(a) Prohibition on Genetic Information as a Condition of
Eligibility.--A health insurance issuer offering health
insurance coverage in the individual market may not establish
rules for the eligibility (including continued eligibility)
of any individual to enroll in individual health insurance
coverage based on genetic information (including information
about a request for or receipt of genetic services by an
individual or family member of such individual).
``(b) Prohibition on Genetic Information in Setting Premium
Rates.--A health insurance issuer offering health insurance
coverage in the individual market shall not adjust premium or
contribution amounts for an individual on the basis of
genetic information concerning the individual or a family
member of the individual (including information about a
request for or receipt of genetic services by an individual
or family member of such individual).
``(c) Genetic Testing.--
``(1) Limitation on requesting or requiring genetic
testing.--A health insurance issuer offering health insurance
coverage in the individual market shall not request or
require an individual or a family member of such individual
to undergo a genetic test.
``(2) Rule of construction.--Nothing in this part shall be
construed to--
``(A) limit the authority of a health care professional who
is providing health care services with respect to an
individual to request that such individual or a family member
of such individual undergo a genetic test;
``(B) limit the authority of a health care professional who
is employed by or affiliated with a health insurance issuer
and who is providing health care services to an individual as
part of a bona fide wellness program to notify such
individual of the availability of a genetic test or to
provide information to such individual regarding such genetic
test; or
``(C) authorize or permit a health care professional to
require that an individual undergo a genetic test.''.
(2) Remedies and enforcement.--Section 2761(b) of the
Public Health Service Act (42 U.S.C. 300gg-61)(b)) is amended
to read as follows:
``(b) Secretarial Enforcement Authority.--The Secretary
shall have the same authority in relation to enforcement of
the provisions of this part with respect to issuers of health
insurance coverage in the individual market in a State as the
Secretary has under section 2722(b)(2), and section
2722(b)(3) with respect to violations of genetic
nondiscrimination provisions, in relation to the enforcement
of the provisions of part A with respect to issuers of health
insurance coverage in the small group market in the State.''.
(c) Elimination of Option of Non-Federal Governmental Plans
to Be Excepted From Requirements Concerning Genetic
Information.--Section 2721(b)(2) of the Public Health Service
Act (42 U.S. C. 300gg-21(b)(2)) is amended--
(1) in subparagraph (A), by striking ``If the plan
sponsor'' and inserting ``Except as provided in subparagraph
(D), if the plan sponsor''; and
(2) by adding at the end the following:
``(D) Election not applicable to requirements concerning
genetic information.--The election described in subparagraph
(A) shall not be available with respect to the provisions of
subsections (a)(1)(F) and (c) of section 2702 and the
provisions of section 2702(b) to the extent that such
provisions apply to genetic information (or information about
a request for or the receipt of genetic services by an
individual or a family member of such individual).''.
(d) Regulations and Effective Date.--
(1) Regulations.--Not later than 1 year after the date of
enactment of this title, the Secretary of Labor and the
Secretary of Health and Human Services (as the case may be)
shall issue final regulations in an accessible format to
carry out the amendments made by this section.
(2) Effective date.--The amendments made by this section
shall apply--
(A) with respect to group health plans, and health
insurance coverage offered in connection with group health
plans, for plan years beginning after the date that is 18
months after the date of enactment of this title; and
(B) with respect to health insurance coverage offered,
sold, issued, renewed, in effect, or operated in the
individual market after the date that is 18 months after the
date of enactment of this title.
SEC. 103. AMENDMENTS TO THE INTERNAL REVENUE CODE OF 1986.
(a) Prohibition of Health Discrimination on the Basis of
Genetic Information or Genetic Services.--
(1) No enrollment restriction for genetic services.--
Section 9802(a)(1)(F) of the Internal Revenue Code of 1986 is
amended by inserting before the period the following:
``(including information about a request for or receipt of
genetic services by an individual or family member of such
individual)''.
(2) No discrimination in group premiums based on genetic
information.--Section 9802(b) of the Internal Revenue Code of
1986 is amended--
(A) in paragraph (2)(A), by inserting before the semicolon
the following: ``, except as provided in paragraph (3)''; and
(B) by adding at the end the following:
``(3) No discrimination in group premiums based on genetic
information.--For purposes of this section, a group health
plan shall not adjust premium or contribution amounts for a
group on the basis of genetic information concerning an
individual in the group or a family member of the individual
(including information about a request for or receipt of
genetic services by an individual or family member of such
individual).''.
(b) Limitations on Genetic Testing.--Section 9802 of the
Internal Revenue Code of 1986 is amended by adding at the end
the following:
``(d) Genetic Testing and Genetic Services.--
``(1) Limitation on requesting or requiring genetic
testing.--A group health plan shall not request or require an
individual or a family member of such individual to undergo a
genetic test.
``(2) Rule of construction.--Nothing in this part shall be
construed to--
``(A) limit the authority of a health care professional who
is providing health care services with respect to an
individual to request that such individual or a family member
of such individual undergo a genetic test;
``(B) limit the authority of a health care professional who
is employed by or affiliated with a group health plan and who
is providing health care services to an individual as part of
a bona fide wellness program to notify such individual of the
availability of a genetic test or to provide information to
such individual regarding such genetic test; or
``(C) authorize or permit a health care professional to
require that an individual undergo a genetic test.
``(e) Application to All Plans.--The provisions of
subsections (a)(1)(F), (b)(3), and (d) shall apply to group
health plans and health insurance issuers without regard to
section 9831(a)(2).''.
(c) Definitions.--Section 9832(d) of the Internal Revenue
Code of 1986 is amended by adding at the end the following:
``(6) Family member.--The term `family member' means with
respect to an individual--
``(A) the spouse of the individual;
``(B) a dependent child of the individual, including a
child who is born to or placed for adoption with the
individual; and
``(C) all other individuals related by blood to the
individual or the spouse or child described in subparagraph
(A) or (B).
``(7) Genetic services.--The term `genetic services'
means--
``(A) a genetic test;
``(B) genetic counseling (such as obtaining, interpreting,
or assessing genetic information); or
``(C) genetic education.
``(8) Genetic information.--
``(A) In general.--Except as provided in subparagraph (B),
the term `genetic information' means information about--
``(i) an individual's genetic tests;
``(ii) the genetic tests of family members of the
individual; or
``(iii) the occurrence of a disease or disorder in family
members of the individual.
``(B) Exclusions.--The term `genetic information' shall not
include information about the sex or age of an individual.
``(9) Genetic test.--
[[Page S1471]]
``(A) In general.--The term `genetic test' means an
analysis of human DNA, RNA, chromosomes, proteins, or
metabolites, that detects genotypes, mutations, or
chromosomal changes.
``(B) Exceptions.--The term `genetic test' does not mean--
``(i) an analysis of proteins or metabolites that does not
detect genotypes, mutations, or chromosomal changes; or
``(ii) an analysis of proteins or metabolites that is
directly related to a manifested disease, disorder, or
pathological condition that could reasonably be detected by a
health care professional with appropriate training and
expertise in the field of medicine involved.''.
(d) Regulations and Effective Date.--
(1) Regulations.--Not later than 1 year after the date of
enactment of this title, the Secretary of the Treasury shall
issue final regulations in an accessible format to carry out
the amendments made by this section.
(2) Effective date.--The amendments made by this section
shall apply with respect to group health plans for plan years
beginning after the date that is 18 months after the date of
enactment of this title.
SEC. 104. AMENDMENTS TO TITLE XVIII OF THE SOCIAL SECURITY
ACT RELATING TO MEDIGAP.
(a) Nondiscrimination.--
(1) In general.--Section 1882(s)(2) of the Social Security
Act (42 U.S.C. 1395ss(s)(2)) is amended by adding at the end
the following:
``(E)(i) An issuer of a medicare supplemental policy shall
not deny or condition the issuance or effectiveness of the
policy, and shall not discriminate in the pricing of the
policy (including the adjustment of premium rates) of an
eligible individual on the basis of genetic information
concerning the individual (or information about a request
for, or the receipt of, genetic services by such individual
or family member of such individual).
``(ii) For purposes of clause (i), the terms `family
member', `genetic services', and `genetic information' shall
have the meanings given such terms in subsection (x).''.
(2) Effective date.--The amendment made by paragraph (1)
shall apply with respect to a policy for policy years
beginning after the date that is 18 months after the date of
enactment of this Act.
(b) Limitations on Genetic Testing.--
(1) In general.--Section 1882 of the Social Security Act
(42 U.S.C. 1395ss) is amended by adding at the end the
following:
``(x) Limitations on Genetic Testing.--
``(1) Genetic testing.--
``(A) Limitation on requesting or requiring genetic
testing.--An issuer of a medicare supplemental policy shall
not request or require an individual or a family member of
such individual to undergo a genetic test.
``(B) Rule of construction.--Nothing in this title shall be
construed to--
``(i) limit the authority of a health care professional who
is providing health care services with respect to an
individual to request that such individual or a family member
of such individual undergo a genetic test;
``(ii) limit the authority of a health care professional
who is employed by or affiliated with an issuer of a medicare
supplemental policy and who is providing health care services
to an individual as part of a bona fide wellness program to
notify such individual of the availability of a genetic test
or to provide information to such individual regarding such
genetic test; or
``(iii) authorize or permit a health care professional to
require that an individual undergo a genetic test.
``(2) Definitions.--In this subsection:
``(A) Family member.--The term `family member' means with
respect to an individual--
``(i) the spouse of the individual;
``(ii) a dependent child of the individual, including a
child who is born to or placed for adoption with the
individual; or
``(iii) any other individuals related by blood to the
individual or to the spouse or child described in clause (i)
or (ii).
``(B) Genetic information.--
``(i) In general.--Except as provided in clause (ii), the
term `genetic information' means information about--
``(I) an individual's genetic tests;
``(II) the genetic tests of family members of the
individual; or
``(III) the occurrence of a disease or disorder in family
members of the individual.
``(ii) Exclusions.--The term `genetic information' shall
not include information about the sex or age of an
individual.
``(C) Genetic test.--
``(i) In general.--The term `genetic test' means an
analysis of human DNA, RNA, chromosomes, proteins, or
metabolites, that detects genotypes, mutations, or
chromosomal changes.
``(ii) Exceptions.--The term `genetic test' does not mean--
``(I) an analysis of proteins or metabolites that does not
detect genotypes, mutations, or chromosomal changes; or
``(II) an analysis of proteins or metabolites that is
directly related to a manifested disease, disorder, or
pathological condition that could reasonably be detected by a
health care professional with appropriate training and
expertise in the field of medicine involved.
``(D) Genetic services.--The term `genetic services'
means--
``(i) a genetic test;
``(ii) genetic counseling (such as obtaining, interpreting,
or assessing genetic information); or
``(iii) genetic education.
``(E) Issuer of a medicare supplemental policy.--The term
`issuer of a medicare supplemental policy' includes a third-
party administrator or other person acting for or on behalf
of such issuer.''.
(2) Conforming amendment.--Section 1882(o) of the Social
Security Act (42 U.S.C. 1395ss(o)) is amended by adding at
the end the following:
``(4) The issuer of the medicare supplemental policy
complies with subsection (s)(2)(E) and subsection (x).''.
(3) Effective date.--The amendments made by this subsection
shall apply with respect to an issuer of a medicare
supplemental policy for policy years beginning on or after
the date that is 18 months after the date of enactment of
this Act.
(c) Transition Provisions.--
(1) In general.--If the Secretary of Health and Human
Services identifies a State as requiring a change to its
statutes or regulations to conform its regulatory program to
the changes made by this section, the State regulatory
program shall not be considered to be out of compliance with
the requirements of section 1882 of the Social Security Act
due solely to failure to make such change until the date
specified in paragraph (4).
(2) NAIC standards.--If, not later than June 30, 2006, the
National Association of Insurance Commissioners (in this
subsection referred to as the ``NAIC'') modifies its NAIC
Model Regulation relating to section 1882 of the Social
Security Act (referred to in such section as the 1991 NAIC
Model Regulation, as subsequently modified) to conform to the
amendments made by this section, such revised regulation
incorporating the modifications shall be considered to be the
applicable NAIC model regulation (including the revised NAIC
model regulation and the 1991 NAIC Model Regulation) for the
purposes of such section.
(3) Secretary standards.--If the NAIC does not make the
modifications described in paragraph (2) within the period
specified in such paragraph, the Secretary of Health and
Human Services shall, not later than October 1, 2006, make
the modifications described in such paragraph and such
revised regulation incorporating the modifications shall be
considered to be the appropriate regulation for the purposes
of such section.
(4) Date specified.--
(A) In general.--Subject to subparagraph (B), the date
specified in this paragraph for a State is the earlier of--
(i) the date the State changes its statutes or regulations
to conform its regulatory program to the changes made by this
section, or
(ii) October 1, 2006.
(B) Additional legislative action required.--In the case of
a State which the Secretary identifies as--
(i) requiring State legislation (other than legislation
appropriating funds) to conform its regulatory program to the
changes made in this section, but
(ii) having a legislature which is not scheduled to meet in
2006 in a legislative session in which such legislation may
be considered, the date specified in this paragraph is the
first day of the first calendar quarter beginning after the
close of the first legislative session of the State
legislature that begins on or after July 1, 2006. For
purposes of the previous sentence, in the case of a State
that has a 2-year legislative session, each year of such
session shall be deemed to be a separate regular session of
the State legislature.
SEC. 105. PRIVACY AND CONFIDENTIALITY.
(a) Applicability.--Except as provided in subsection (d),
the provisions of this section shall apply to group health
plans, health insurance issuers (including issuers in
connection with group health plans or individual health
coverage), and issuers of medicare supplemental policies,
without regard to--
(1) section 732(a) of the Employee Retirement Income
Security Act of 1974 (29 U.S.C. 1191a(a));
(2) section 2721(a) of the Public Health Service Act (42
U.S.C. 300gg-21(a)); and
(3) section 9831(a)(2) of the Internal Revenue Code of
1986.
(b) Compliance With Certain Confidentiality Standards With
Respect to Genetic Information.--
(1) In general.--The regulations promulgated by the
Secretary of Health and Human Services under part C of title
XI of the Social Security Act (42 U.S.C. 1320d et seq.) and
section 264 of the Health Insurance Portability and
Accountability Act of 1996 (42 U.S.C. 1320d-2 note) shall
apply to the use or disclosure of genetic information.
(2) Prohibition on underwriting and premium rating.--
Notwithstanding paragraph (1), a group health plan, a health
insurance issuer, or issuer of a medicare supplemental policy
shall not use or disclose genetic information (including
information about a request for or a receipt of genetic
services by an individual or family member of such
individual) for purposes of underwriting, determinations of
eligibility to enroll, premium rating, or the creation,
renewal or replacement of a plan, contract or coverage for
health insurance or health benefits.
(c) Prohibition on Collection of Genetic Information.--
(1) In general.--A group health plan, health insurance
issuer, or issuer of a medicare supplemental policy shall not
request, require, or purchase genetic information (including
information about a request for or a receipt of genetic
services by an individual or family member of such
individual) for purposes of underwriting, determinations of
eligibility to enroll, premium rating, or the creation,
renewal or replacement of a plan, contract or coverage for
health insurance or health benefits.
(2) Limitation relating to the collection of genetic
information prior to enrollment.--A group health plan, health
insurance issuer, or issuer of a medicare supplemental policy
shall not request, require, or purchase genetic information
(including information about a request for or a receipt of
genetic services by an individual or family member of such
individual) concerning a participant, beneficiary, or
enrollee prior to the enrollment, and in connection with such
enrollment, of such individual under the plan, coverage, or
policy.
[[Page S1472]]
(3) Incidental collection.--Where a group health plan,
health insurance issuer, or issuer of a medicare supplemental
policy obtains genetic information incidental to the
requesting, requiring, or purchasing of other information
concerning a participant, beneficiary, or enrollee, such
request, requirement, or purchase shall not be considered a
violation of this subsection if--
(A) such request, requirement, or purchase is not in
violation of paragraph (1); and
(B) any genetic information (including information about a
request for or receipt of genetic services) requested,
required, or purchased is not used or disclosed in violation
of subsection (b).
(d) Application of Confidentiality Standards.--The
provisions of subsections (b) and (c) shall not apply--
(1) to group health plans, health insurance issuers, or
issuers of medicare supplemental policies that are not
otherwise covered under the regulations promulgated by the
Secretary of Health and Human Services under part C of title
XI of the Social Security Act (42 U.S.C. 1320d et seq.) and
section 264 of the Health Insurance Portability and
Accountability Act of 1996 (42 U.S.C. 1320d-2 note); and
(2) to genetic information that is not considered to be
individually-identifiable health information under the
regulations promulgated by the Secretary of Health and Human
Services under part C of title XI of the Social Security Act
(42 U.S.C. 1320d et seq.) and section 264 of the Health
Insurance Portability and Accountability Act of 1996 (42
U.S.C. 1320d-2 note).
(e) Enforcement.--A group health plan, health insurance
issuer, or issuer of a medicare supplemental policy that
violates a provision of this section shall be subject to the
penalties described in sections 1176 and 1177 of the Social
Security Act (42 U.S.C. 1320d-5 and 1320d-6) in the same
manner and to the same extent that such penalties apply to
violations of part C of title XI of such Act.
(f) Preemption.--
(1) In general.--A provision or requirement under this
section or a regulation promulgated under this section shall
supersede any contrary provision of State law unless such
provision of State law imposes requirements, standards, or
implementation specifications that are more stringent than
the requirements, standards, or implementation specifications
imposed under this section or such regulations. No penalty,
remedy, or cause of action to enforce such a State law that
is more stringent shall be preempted by this section.
(2) Rule of construction.--Nothing in paragraph (1) shall
be construed to establish a penalty, remedy, or cause of
action under State law if such penalty, remedy, or cause of
action is not otherwise available under such State law.
(g) Coordination With Privacy Regulations.--The Secretary
shall implement and administer this section in a manner that
is consistent with the implementation and administration by
the Secretary of the regulations promulgated by the Secretary
of Health and Human Services under part C of title XI of the
Social Security Act (42 U.S.C. 1320d et seq.) and section 264
of the Health Insurance Portability and Accountability Act of
1996 (42 U.S.C. 1320d-2 note).
(h) Definitions.--In this section:
(1) Genetic information; genetic services.--The terms
``family member'', ``genetic information'', ``genetic
services'', and ``genetic test'' have the meanings given such
terms in section 2791 of the Public Health Service Act (42
U.S.C. 300gg-91), as amended by this Act.
(2) Group health plan; health insurance issuer.--The terms
``group health plan'' and ``health insurance issuer'' include
only those plans and issuers that are covered under the
regulations described in subsection (d)(1).
(3) Issuer of a medicare supplemental policy.--The term
``issuer of a medicare supplemental policy'' means an issuer
described in section 1882 of the Social Security Act (42
insert 1395ss).
(4) Secretary.--The term ``Secretary'' means the Secretary
of Health and Human Services.
SEC. 106. ASSURING COORDINATION.
(a) In General.--Except as provided in subsection (b), the
Secretary of the Treasury, the Secretary of Health and Human
Services, and the Secretary of Labor shall ensure, through
the execution of an interagency memorandum of understanding
among such Secretaries, that--
(1) regulations, rulings, and interpretations issued by
such Secretaries relating to the same matter over which two
or more such Secretaries have responsibility under this title
(and the amendments made by this title) are administered so
as to have the same effect at all times; and
(2) coordination of policies relating to enforcing the same
requirements through such Secretaries in order to have a
coordinated enforcement strategy that avoids duplication of
enforcement efforts and assigns priorities in enforcement.
(b) Authority of the Secretary.--The Secretary of Health
and Human Services has the sole authority to promulgate
regulations to implement section 105.
SEC. 107. REGULATIONS; EFFECTIVE DATE.
(a) Regulations.--Not later than 1 year after the date of
enactment of this title, the Secretary of Labor, the
Secretary of Health and Human Services, and the Secretary of
the Treasury shall issue final regulations in an accessible
format to carry out this title.
(b) Effective Date.--Except as provided in section 104, the
amendments made by this title shall take effect on the date
that is 18 months after the date of enactment of this Act.
TITLE II--PROHIBITING EMPLOYMENT DISCRIMINATION ON THE BASIS OF GENETIC
INFORMATION
SEC. 201. DEFINITIONS.
In this title:
(1) Commission.--The term ``Commission'' means the Equal
Employment Opportunity Commission as created by section 705
of the Civil Rights Act of 1964 (42 U.S.C. 2000e-4).
(2) Employee; employer; employment agency; labor
organization; member.--
(A) In general.--The term ``employee'' means--
(i) an employee (including an applicant), as defined in
section 701(f) of the Civil Rights Act of 1964 (42 U.S.C.
2000e(f));
(ii) a State employee (including an applicant) described in
section 304(a) of the Government Employee Rights Act of 1991
(42 U.S.C. 2000e-16c(a));
(iii) a covered employee (including an applicant), as
defined in section 101 of the Congressional Accountability
Act of 1995 (2 U.S.C. 1301);
(iv) a covered employee (including an applicant), as
defined in section 411(c) of title 3, United States Code; or
(v) an employee or applicant to which section 717(a) of the
Civil Rights Act of 1964 (42 U.S.C. 2000e-16(a)) applies.
(B) Employer.--The term ``employer'' means--
(i) an employer (as defined in section 701(b) of the Civil
Rights Act of 1964 (42 U.S.C. 2000e(b));
(ii) an entity employing a State employee described in
section 304(a) of the Government Employee Rights Act of 1991;
(iii) an employing office, as defined in section 101 of the
Congressional Accountability Act of 1995;
(iv) an employing office, as defined in section 411(c) of
title 3, United States Code; or
(v) an entity to which section 717(a) of the Civil Rights
Act of 1964 applies.
(C) Employment agency; labor organization.--The terms
``employment agency'' and ``labor organization'' have the
meanings given the terms in section 701 of the Civil Rights
Act of 1964 (42 U.S.C. 2000e).
(D) Member.--The term ``member'', with respect to a labor
organization, includes an applicant for membership in a labor
organization.
(3) Family member.--The term ``family member'' means with
respect to an individual--
(A) the spouse of the individual;
(B) a dependent child of the individual, including a child
who is born to or placed for adoption with the individual;
and
(C) all other individuals related by blood to the
individual or the spouse or child described in subparagraph
(A) or (B).
(4) Genetic information.--
(A) In general.--Except as provided in subparagraph (B),
the term ``genetic information'' means information about--
(i) an individual's genetic tests;
(ii) the genetic tests of family members of the individual;
or
(iii) the occurrence of a disease or disorder in family
members of the individual.
(B) Exceptions.--The term ``genetic information'' shall not
include information about the sex or age of an individual.
(5) Genetic monitoring.--The term ``genetic monitoring''
means the periodic examination of employees to evaluate
acquired modifications to their genetic material, such as
chromosomal damage or evidence of increased occurrence of
mutations, that may have developed in the course of
employment due to exposure to toxic substances in the
workplace, in order to identify, evaluate, and respond to the
effects of or control adverse environmental exposures in the
workplace.
(6) Genetic services.--The term ``genetic services''
means--
(A) a genetic test;
(B) genetic counseling (such as obtaining, interpreting or
assessing genetic information); or
(C) genetic education.
(7) Genetic test.--
(A) In general.--The term ``genetic test'' means the
analysis of human DNA, RNA, chromosomes, proteins, or
metabolites, that detects genotypes, mutations, or
chromosomal changes.
(B) Exception.--The term ``genetic test'' does not mean an
analysis of proteins or metabolites that does not detect
genotypes, mutations, or chromosomal changes.
SEC. 202. EMPLOYER PRACTICES.
(a) Use of Genetic Information.--It shall be an unlawful
employment practice for an employer--
(1) to fail or refuse to hire or to discharge any employee,
or otherwise to discriminate against any employee with
respect to the compensation, terms, conditions, or privileges
of employment of the employee, because of genetic information
with respect to the employee (or information about a request
for or the receipt of genetic services by such employee or
family member of such employee); or
(2) to limit, segregate, or classify the employees of the
employer in any way that would deprive or tend to deprive any
employee of employment opportunities or otherwise adversely
affect the status of the employee as an employee, because of
genetic information with respect to the employee (or
information about a request for or the receipt of genetic
services by such employee or family member of such employee).
(b) Acquisition of Genetic Information.--It shall be an
unlawful employment practice for an employer to request,
require, or purchase genetic information with respect to an
employee or a family member of the employee (or information
about a request for the receipt of genetic services by such
employee or a family member of such employee) except--
(1) where an employer inadvertently requests or requires
family medical history of the employee or family member of
the employee;
(2) where--
(A) health or genetic services are offered by the employer,
including such services offered as part of a bona fide
wellness program;
(B) the employee provides prior, knowing, voluntary, and
written authorization;
(C) only the employee (or family member if the family
member is receiving genetic services) and
[[Page S1473]]
the licensed health care professional or board certified
genetic counselor involved in providing such services receive
individually identifiable information concerning the results
of such services; and
(D) any individually identifiable genetic information
provided under subparagraph (C) in connection with the
services provided under subparagraph (A) is only available
for purposes of such services and shall not be disclosed to
the employer except in aggregate terms that do not disclose
the identity of specific employees;
(3) where an employer requests or requires family medical
history from the employee to comply with the certification
provisions of section 103 of the Family and Medical Leave Act
of 1993 (29 U.S.C. 2613) or such requirements under State
family and medical leave laws;
(4) where an employer purchases documents that are
commercially and publicly available (including newspapers,
magazines, periodicals, and books, but not including medical
databases or court records) that include family medical
history; or
(5) where the information involved is to be used for
genetic monitoring of the biological effects of toxic
substances in the workplace, but only if--
(A) the employer provides written notice of the genetic
monitoring to the employee;
(B)(i) the employee provides prior, knowing, voluntary, and
written authorization; or
(ii) the genetic monitoring is required by Federal or State
law;
(C) the employee is informed of individual monitoring
results;
(D) the monitoring is in compliance with--
(i) any Federal genetic monitoring regulations, including
any such regulations that may be promulgated by the Secretary
of Labor pursuant to the Occupational Safety and Health Act
of 1970 (29 U.S.C. 651 et seq.), the Federal Mine Safety and
Health Act of 1977 (30 U.S.C. 801 et seq.), or the Atomic
Energy Act of 1954 (42 U.S.C. 2011 et seq.); or
(ii) State genetic monitoring regulations, in the case of a
State that is implementing genetic monitoring regulations
under the authority of the Occupational Safety and Health Act
of 1970 (29 U.S.C. 651 et seq.); and
(E) the employer, excluding any licensed health care
professional or board certified genetic counselor that is
involved in the genetic monitoring program, receives the
results of the monitoring only in aggregate terms that do not
disclose the identity of specific employees;
(c) Preservation of Protections.--In the case of
information to which any of paragraphs (1) through (5) of
subsection (b) applies, such information may not be used in
violation of paragraph (1) or (2) of subsection (a) or
treated or disclosed in a manner that violates section 206.
SEC. 203. EMPLOYMENT AGENCY PRACTICES.
(a) Use of Genetic Information.--It shall be an unlawful
employment practice for an employment agency--
(1) to fail or refuse to refer for employment, or otherwise
to discriminate against, any individual because of genetic
information with respect to the individual (or information
about a request for or the receipt of genetic services by
such individual or family member of such individual);
(2) to limit, segregate, or classify individuals or fail or
refuse to refer for employment any individual in any way that
would deprive or tend to deprive any individual of employment
opportunities, or otherwise adversely affect the status of
the individual as an employee, because of genetic information
with respect to the individual (or information about a
request for or the receipt of genetic services by such
individual or family member of such individual); or
(3) to cause or attempt to cause an employer to
discriminate against an individual in violation of this
title.
(b) Acquisition of Genetic Information.--It shall be an
unlawful employment practice for an employment agency to
request, require, or purchase genetic information with
respect to an individual or a family member of the individual
(or information about a request for the receipt of genetic
services by such individual or a family member of such
individual) except--
(1) where an employment agency inadvertently requests or
requires family medical history of the individual or family
member of the individual;
(2) where--
(A) health or genetic services are offered by the
employment agency, including such services offered as part of
a bona fide wellness program;
(B) the individual provides prior, knowing, voluntary, and
written authorization;
(C) only the individual (or family member if the family
member is receiving genetic services) and the licensed health
care professional or board certified genetic counselor
involved in providing such services receive individually
identifiable information concerning the results of such
services; and
(D) any individually identifiable genetic information
provided under subparagraph (C) in connection with the
services provided under subparagraph (A) is only available
for purposes of such services and shall not be disclosed to
the employment agency except in aggregate terms that do not
disclose the identity of specific individuals;
(3) where an employment agency requests or requires family
medical history from the individual to comply with the
certification provisions of section 103 of the Family and
Medical Leave Act of 1993 (29 U.S.C. 2613) or such
requirements under State family and medical leave laws;
(4) where an employment agency purchases documents that are
commercially and publicly available (including newspapers,
magazines, periodicals, and books, but not including medical
databases or court records) that include family medical
history; or
(5) where the information involved is to be used for
genetic monitoring of the biological effects of toxic
substances in the workplace, but only if--
(A) the employment agency provides written notice of the
genetic monitoring to the individual;
(B)(i) the individual provides prior, knowing, voluntary,
and written authorization; or
(ii) the genetic monitoring is required by Federal or State
law;
(C) the individual is informed of individual monitoring
results;
(D) the monitoring is in compliance with--
(i) any Federal genetic monitoring regulations, including
any such regulations that may be promulgated by the Secretary
of Labor pursuant to the Occupational Safety and Health Act
of 1970 (29 U.S.C. 651 et seq.), the Federal Mine Safety and
Health Act of 1977 (30 U.S.C. 801 et seq.), or the Atomic
Energy Act of 1954 (42 U.S.C. 2011 et seq.); or
(ii) State genetic monitoring regulations, in the case of a
State that is implementing genetic monitoring regulations
under the authority of the Occupational Safety and Health Act
of 1970 (29 U.S.C. 651 et seq.); and
(E) the employment agency, excluding any licensed health
care professional or board certified genetic counselor that
is involved in the genetic monitoring program, receives the
results of the monitoring only in aggregate terms that do not
disclose the identity of specific individuals;
(c) Preservation of Protections.--In the case of
information to which any of paragraphs (1) through (5) of
subsection (b) applies, such information may not be used in
violation of paragraph (1) or (2) of subsection (a) or
treated or disclosed in a manner that violates section 206.
SEC. 204. LABOR ORGANIZATION PRACTICES.
(a) Use of Genetic Information.--It shall be an unlawful
employment practice for a labor organization--
(1) to exclude or to expel from the membership of the
organization, or otherwise to discriminate against, any
member because of genetic information with respect to the
member (or information about a request for or the receipt of
genetic services by such member or family member of such
member);
(2) to limit, segregate, or classify the members of the
organization, or fail or refuse to refer for employment any
member, in any way that would deprive or tend to deprive any
member of employment opportunities, or otherwise adversely
affect the status of the member as an employee, because of
genetic information with respect to the member (or
information about a request for or the receipt of genetic
services by such member or family member of such member); or
(3) to cause or attempt to cause an employer to
discriminate against a member in violation of this title.
(b) Acquisition of Genetic Information.--It shall be an
unlawful employment practice for a labor organization to
request, require, or purchase genetic information with
respect to a member or a family member of the member (or
information about a request for the receipt of genetic
services by such member or a family member of such member)
except--
(1) where a labor organization inadvertently requests or
requires family medical history of the member or family
member of the member;
(2) where--
(A) health or genetic services are offered by the labor
organization, including such services offered as part of a
bona fide wellness program;
(B) the member provides prior, knowing, voluntary, and
written authorization;
(C) only the member (or family member if the family member
is receiving genetic services) and the licensed health care
professional or board certified genetic counselor involved in
providing such services receive individually identifiable
information concerning the results of such services; and
(D) any individually identifiable genetic information
provided under subparagraph (C) in connection with the
services provided under subparagraph (A) is only available
for purposes of such services and shall not be disclosed to
the labor organization except in aggregate terms that do not
disclose the identity of specific members;
(3) where a labor organization requests or requires family
medical history from the members to comply with the
certification provisions of section 103 of the Family and
Medical Leave Act of 1993 (29 U.S.C. 2613) or such
requirements under State family and medical leave laws;
(4) where a labor organization purchases documents that are
commercially and publicly available (including newspapers,
magazines, periodicals, and books, but not including medical
databases or court records) that include family medical
history; or
(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
[[Page S1474]]
seq.), or the Atomic Energy Act of 1954 (42 U.S.C. 2011 et
seq.); or
(ii) State genetic monitoring regulations, in the case of a
State that is implementing genetic monitoring regulations
under the authority of the Occupational Safety and Health Act
of 1970 (29 U.S.C. 651 et seq.); and
(E) the labor organization, excluding any licensed health
care professional or board certified genetic counselor that
is involved in the genetic monitoring program, receives the
results of the monitoring only in aggregate terms that do not
disclose the identity of specific members;
(c) Preservation of Protections.--In the case of
information to which any of paragraphs (1) through (5) of
subsection (b) applies, such information may not be used in
violation of paragraph (1) or (2) of subsection (a) or
treated or disclosed in a manner that violates section 206.
SEC. 205. TRAINING PROGRAMS.
(a) Use of Genetic Information.--It shall be an unlawful
employment practice for any employer, labor organization, or
joint labor-management committee controlling apprenticeship
or other training or retraining, including on-the-job
training programs--
(1) to discriminate against any individual because of
genetic information with respect to the individual (or
information about a request for or the receipt of genetic
services by such individual or a family member of such
individual) in admission to, or employment in, any program
established to provide apprenticeship or other training or
retraining;
(2) to limit, segregate, or classify the applicants for or
participants in such apprenticeship or other training or
retraining, or fail or refuse to refer for employment any
individual, in any way that would deprive or tend to deprive
any individual of employment opportunities, or otherwise
adversely affect the status of the individual as an employee,
because of genetic information with respect to the individual
(or information about a request for or receipt of genetic
services by such individual or family member of such
individual); or
(3) to cause or attempt to cause an employer to
discriminate against an applicant for or a participant in
such apprenticeship or other training or retraining in
violation of this title.
(b) Acquisition of Genetic Information.--It shall be an
unlawful employment practice for an employer, labor
organization, or joint labor-management committee described
in subsection (a) to request, require, or purchase genetic
information with respect to an individual or a family member
of the individual (or information about a request for the
receipt of genetic services by such individual or a family
member of such individual) except--
(1) where the employer, labor organization, or joint labor-
management committee inadvertently requests or requires
family medical history of the individual or family member of
the individual;
(2) where--
(A) health or genetic services are offered by the employer,
labor organization, or joint labor-management committee,
including such services offered as part of a bona fide
wellness program;
(B) the individual provides prior, knowing, voluntary, and
written authorization;
(C) only the individual (or family member if the family
member is receiving genetic services) and the licensed health
care professional or board certified genetic counselor
involved in providing such services receive individually
identifiable information concerning the results of such
services;
(D) any individually identifiable genetic information
provided under subparagraph (C) in connection with the
services provided under subparagraph (A) is only available
for purposes of such services and shall not be disclosed to
the employer, labor organization, or joint labor-management
committee except in aggregate terms that do not disclose the
identity of specific individuals;
(3) where the employer, labor organization, or joint labor-
management committee requests or requires family medical
history from the individual to comply with the certification
provisions of section 103 of the Family and Medical Leave Act
of 1993 (29 U.S.C. 2613) or such requirements under State
family and medical leave laws;
(4) where the employer, labor organization, or joint labor-
management committee purchases documents that are
commercially and publicly available (including newspapers,
magazines, periodicals, and books, but not including medical
databases or court records) that include family medical
history; or
(5) where the information involved is to be used for
genetic monitoring of the biological effects of toxic
substances in the workplace, but only if--
(A) the employer, labor organization, or joint labor-
management committee provides written notice of the genetic
monitoring to the individual;
(B)(i) the individual provides prior, knowing, voluntary,
and written authorization; or
(ii) the genetic monitoring is required by Federal or State
law;
(C) the individual is informed of individual monitoring
results;
(D) the monitoring is in compliance with--
(i) any Federal genetic monitoring regulations, including
any such regulations that may be promulgated by the Secretary
of Labor pursuant to the Occupational Safety and Health Act
of 1970 (29 U.S.C. 651 et seq.), the Federal Mine Safety and
Health Act of 1977 (30 U.S.C. 801 et seq.), or the Atomic
Energy Act of 1954 (42 U.S.C. 2011 et seq.); or
(ii) State genetic monitoring regulations, in the case of a
State that is implementing genetic monitoring regulations
under the authority of the Occupational Safety and Health Act
of 1970 (29 U.S.C. 651 et seq.); and
(E) the employer, labor organization, or joint labor-
management committee, excluding any licensed health care
professional or board certified genetic counselor that is
involved in the genetic monitoring program, receives the
results of the monitoring only in aggregate terms that do not
disclose the identity of specific individuals;
(c) Preservation of Protections.--In the case of
information to which any of paragraphs (1) through (5) of
subsection (b) applies, such information may not be used in
violation of paragraph (1) or (2) of subsection (a) or
treated or disclosed in a manner that violates section 206.
SEC. 206. CONFIDENTIALITY OF GENETIC INFORMATION.
(a) Treatment of Information as Part of Confidential
Medical Record.--If an employer, employment agency, labor
organization, or joint labor-management committee possesses
genetic information about an employee or member (or
information about a request for or receipt of genetic
services by such employee or member or family member of such
employee or member), such information shall be maintained on
separate forms and in separate medical files and be treated
as a confidential medical record of the employee or member.
(b) Limitation on Disclosure.--An employer, employment
agency, labor organization, or joint labor-management
committee shall not disclose genetic information concerning
an employee or member (or information about a request for or
receipt of genetic services by such employee or member or
family member of such employee or member) except--
(1) to the employee (or family member if the family member
is receiving the genetic services) or member of a labor
organization at the request of the employee or member of such
organization;
(2) to an occupational or other health researcher if the
research is conducted in compliance with the regulations and
protections provided for under part 46 of title 45, Code of
Federal Regulations;
(3) in response to an order of a court, except that--
(A) the employer, employment agency, labor organization, or
joint labor-management committee may disclose only the
genetic information expressly authorized by such order; and
(B) if the court order was secured without the knowledge of
the employee or member to whom the information refers, the
employer, employment agency, labor organization, or joint
labor-management committee shall provide the employee or
member with adequate notice to challenge the court order;
(4) to government officials who are investigating
compliance with this title if the information is relevant to
the investigation; or
(5) to the extent that such disclosure is made in
connection with the employee's compliance with the
certification provisions of section 103 of the Family and
Medical Leave Act of 1993 (29 U.S.C. 2613) or such
requirements under State family and medical leave laws.
SEC. 207. REMEDIES AND ENFORCEMENT.
(a) Employees Covered by Title VII of the Civil Rights Act
of 1964.--
(1) In general.--The powers, remedies, and procedures
provided in sections 705, 706, 707, 709, 710, and 711 of the
Civil Rights Act of 1964 (42 U.S.C. 2000e-4 et seq.) to the
Commission, the Attorney General, or any person, alleging a
violation of title VII of that Act (42 U.S.C. 2000e et seq.)
shall be the powers, remedies, and procedures this title
provides to the Commission, the Attorney General, or any
person, respectively, alleging an unlawful employment
practice in violation of this title against an employee
described in section 201(2)(A)(i), except as provided in
paragraphs (2) and (3).
(2) Costs and fees.--The powers, remedies, and procedures
provided in subsections (b) and (c) of section 722 of the
Revised Statutes (42 U.S.C. 1988), shall be powers, remedies,
and procedures this title provides to the Commission, the
Attorney General, or any person, alleging such a practice.
(3) Damages.--The powers, remedies, and procedures provided
in section 1977A of the Revised Statutes (42 U.S.C. 1981a),
including the limitations contained in subsection (b)(3) of
such section 1977A, shall be powers, remedies, and procedures
this title provides to the Commission, the Attorney General,
or any person, alleging such a practice (not an employment
practice specifically excluded from coverage under section
1977A(a)(1) of the Revised Statutes).
(b) Employees Covered by Government Employee Rights Act of
1991.--
(1) In general.--The powers, remedies, and procedures
provided in sections 302 and 304 of the Government Employee
Rights Act of 1991 (42 U.S.C. 2000e-16b, 2000e-16c) to the
Commission, or any person, alleging a violation of section
302(a)(1) of that Act (42 U.S.C. 2000e-16b(a)(1)) shall be
the powers, remedies, and procedures this title provides to
the Commission, or any person, respectively, alleging an
unlawful employment practice in violation of this title
against an employee described in section 201(2)(A)(ii),
except as provided in paragraphs (2) and (3).
(2) Costs and fees.--The powers, remedies, and procedures
provided in subsections (b) and (c) of section 722 of the
Revised Statutes (42 U.S.C. 1988), shall be powers, remedies,
and procedures this title provides to the Commission, or any
person, alleging such a practice.
(3) Damages.--The powers, remedies, and procedures provided
in section 1977A of the Revised Statutes (42 U.S.C. 1981a),
including the limitations contained in subsection (b)(3) of
such section 1977A, shall be powers, remedies, and procedures
this title provides to the Commission, or any person,
alleging such a practice (not an employment practice
specifically excluded from coverage under section 1977A(a)(1)
of the Revised Statutes).
[[Page S1475]]
(c) Employees Covered by Congressional Accountability Act
of 1995.--
(1) In general.--The powers, remedies, and procedures
provided in the Congressional Accountability Act of 1995 (2
U.S.C. 1301 et seq.) to the Board (as defined in section 101
of that Act (2 U.S.C. 1301)), or any person, alleging a
violation of section 201(a)(1) of that Act (42 U.S.C.
1311(a)(1)) shall be the powers, remedies, and procedures
this title provides to that Board, or any person, alleging an
unlawful employment practice in violation of this title
against an employee described in section 201(2)(A)(iii),
except as provided in paragraphs (2) and (3).
(2) Costs and fees.--The powers, remedies, and procedures
provided in subsections (b) and (c) of section 722 of the
Revised Statutes (42 U.S.C. 1988), shall be powers, remedies,
and procedures this title provides to that Board, or any
person, alleging such a practice.
(3) Damages.--The powers, remedies, and procedures provided
in section 1977A of the Revised Statutes (42 U.S.C. 1981a),
including the limitations contained in subsection (b)(3) of
such section 1977A, shall be powers, remedies, and procedures
this title provides to that Board, or any person, alleging
such a practice (not an employment practice specifically
excluded from coverage under section 1977A(a)(1) of the
Revised Statutes).
(4) Other applicable provisions.--With respect to a claim
alleging a practice described in paragraph (1), title III of
the Congressional Accountability Act of 1995 (2 U.S.C. 1381
et seq.) shall apply in the same manner as such title applies
with respect to a claim alleging a violation of section
201(a)(1) of such Act (2 U.S.C. 1311(a)(1)).
(d) Employees Covered by Chapter 5 of Title 3, United
States Code.--
(1) In general.--The powers, remedies, and procedures
provided in chapter 5 of title 3, United States Code, to the
President, the Commission, the Merit Systems Protection
Board, or any person, alleging a violation of section
411(a)(1) of that title, shall be the powers, remedies, and
procedures this title provides to the President, the
Commission, such Board, or any person, respectively, alleging
an unlawful employment practice in violation of this title
against an employee described in section 201(2)(A)(iv),
except as provided in paragraphs (2) and (3).
(2) Costs and fees.--The powers, remedies, and procedures
provided in subsections (b) and (c) of section 722 of the
Revised Statutes (42 U.S.C. 1988), shall be powers, remedies,
and procedures this title provides to the President, the
Commission, such Board, or any person, alleging such a
practice.
(3) Damages.--The powers, remedies, and procedures provided
in section 1977A of the Revised Statutes (42 U.S.C. 1981a),
including the limitations contained in subsection (b)(3) of
such section 1977A, shall be powers, remedies, and procedures
this title provides to the President, the Commission, such
Board, or any person, alleging such a practice (not an
employment practice specifically excluded from coverage under
section 1977A(a)(1) of the Revised Statutes).
(e) Employees Covered by Section 717 of the Civil Rights
Act of 1964.--
(1) In general.--The powers, remedies, and procedures
provided in section 717 of the Civil Rights Act of 1964 (42
U.S.C. 2000e-16) to the Commission, the Attorney General, the
Librarian of Congress, or any person, alleging a violation of
that section shall be the powers, remedies, and procedures
this title provides to the Commission, the Attorney General,
the Librarian of Congress, or any person, respectively,
alleging an unlawful employment practice in violation of this
title against an employee or applicant described in section
201(2)(A)(v), except as provided in paragraphs (2) and (3).
(2) Costs and fees.--The powers, remedies, and procedures
provided in subsections (b) and (c) of section 722 of the
Revised Statutes (42 U.S.C. 1988), shall be powers, remedies,
and procedures this title provides to the Commission, the
Attorney General, the Librarian of Congress, or any person,
alleging such a practice.
(3) Damages.--The powers, remedies, and procedures provided
in section 1977A of the Revised Statutes (42 U.S.C. 1981a),
including the limitations contained in subsection (b)(3) of
such section 1977A, shall be powers, remedies, and procedures
this title provides to the Commission, the Attorney General,
the Librarian of Congress, or any person, alleging such a
practice (not an employment practice specifically excluded
from coverage under section 1977A(a)(1) of the Revised
Statutes).
(f) Definition.--In this section, the term ``Commission''
means the Equal Employment Opportunity Commission.
SEC. 208. DISPARATE IMPACT.
(a) General Rule.--Notwithstanding any other provision of
this Act, ``disparate impact'', as that term is used in
section 703(k) of the Civil Rights Act of 1964 (42 U.S.C.
2000e-d(k)), on the basis of genetic information does not
establish a cause of action under this Act.
(b) Commission.--On the date that is 6 years after the date
of enactment of this Act, there shall be established a
commission, to be known as the Genetic Nondiscrimination
Study Commission (referred to in this section as the
``Commission'') to review the developing science of genetics
and to make recommendations to Congress regarding whether to
provide a disparate impact cause of action under this Act.
(c) Membership.--
(1) In general.--The Commission shall be composed of 8
members, of which--
(A) 1 member shall be appointed by the Majority Leader of
the Senate;
(B) 1 member shall be appointed by the Minority Leader of
the Senate;
(C) 1 member shall be appointed by the Chairman of the
Committee on Health, Education, Labor, and Pensions of the
Senate;
(D) 1 member shall be appointed by the ranking minority
member of the Committee on Health, Education, Labor, and
Pensions of the Senate;
(E) 1 member shall be appointed by the Speaker of the House
of Representatives;
(F) 1 member shall be appointed by the Minority Leader of
the House of Representatives;
(G) 1 member shall be appointed by the Chairman of the
Committee on Education and the Workforce of the House of
Representatives; and
(H) 1 member shall be appointed by the ranking minority
member of the Committee on Education and the Workforce of the
House of Representatives.
(2) Compensation and expenses.--The members of the
Commission shall not receive compensation for the performance
of services for the Commission, but shall be allowed travel
expenses, including per diem in lieu of subsistence, at rates
authorized for employees of agencies under subchapter I of
chapter 57 of title 5, United States Code, while away from
their homes or regular places of business in the performance
of services for the Commission.
(d) Administrative Provisions.--
(1) Location.--The Commission shall be located in a
facility maintained by the Equal Employment Opportunity
Commission.
(2) Detail of government employees.--Any Federal Government
employee may be detailed to the Commission without
reimbursement, and such detail shall be without interruption
or loss of civil service status or privilege.
(3) Information from federal agencies.--The Commission may
secure directly from any Federal department or agency such
information as the Commission considers necessary to carry
out the provisions of this section. Upon request of the
Commission, the head of such department or agency shall
furnish such information to the Commission.
(4) Hearings.--The Commission may hold such hearings, sit
and act at such times and places, take such testimony, and
receive such evidence as the Commission considers advisable
to carry out the objectives of this section, except that, to
the extent possible, the Commission shall use existing data
and research.
(5) Postal services.--The Commission may use the United
States mails in the same manner and under the same conditions
as other departments and agencies of the Federal Government.
(e) Report.--Not later than 1 year after all of the members
are appointed to the Commission under subsection (c)(1), the
Commission shall submit to Congress a report that summarizes
the findings of the Commission and makes such recommendations
for legislation as are consistent with this Act.
(f) Authorization of Appropriations.--There are authorized
to be appropriated to the Equal Employment Opportunity
Commission such sums as may be necessary to carry out this
section.
SEC. 209. CONSTRUCTION.
Nothing in this title shall be construed to--
(1) limit the rights or protections of an individual under
the Americans with Disabilities Act of 1990 (42 U.S.C. 12101
et seq.), including coverage afforded to individuals under
section 102 of such Act (42 U.S.C. 12112), or under the
Rehabilitation Act of 1973 (29 U.S.C. 701 et seq.);
(2)(A) limit the rights or protections of an individual to
bring an action under this title against an employer,
employment agency, labor organization, or joint labor-
management committee for a violation of this title; or
(B) establish a violation under this title for an employer,
employment agency, labor organization, or joint labor-
management committee of a provision of the amendments made by
title I;
(3) limit the rights or protections of an individual under
any other Federal or State statute that provides equal or
greater protection to an individual than the rights or
protections provided for under this title;
(4) apply to the Armed Forces Repository of Specimen
Samples for the Identification of Remains;
(5) limit or expand the protections, rights, or obligations
of employees or employers under applicable workers'
compensation laws;
(6) limit the authority of a Federal department or agency
to conduct or sponsor occupational or other health research
that is conducted in compliance with the regulations
contained in part 46 of title 45, Code of Federal Regulations
(or any corresponding or similar regulation or rule); and
(7) limit the statutory or regulatory authority of the
Occupational Safety and Health Administration or the Mine
Safety and Health Administration to promulgate or enforce
workplace safety and health laws and regulations.
SEC. 210. MEDICAL INFORMATION THAT IS NOT GENETIC
INFORMATION.
An employer, employment agency, labor organization, or
joint labor-management committee shall not be considered to
be in violation of this title based on the use, acquisition,
or disclosure of medical information that is not genetic
information about a manifested disease, disorder, or
pathological condition of an employee or member, including a
manifested disease, disorder, or pathological condition that
has or may have a genetic basis.
SEC. 211. REGULATIONS.
Not later than 1 year after the date of enactment of this
title, the Commission shall issue final regulations in an
accessible format to carry out this title.
SEC. 212. AUTHORIZATION OF APPROPRIATIONS.
There are authorized to be appropriated such sums as may be
necessary to carry out this title (except for section 208).
SEC. 213. EFFECTIVE DATE.
This title takes effect on the date that is 18 months after
the date of enactment of this Act.
[[Page S1476]]
TITLE III--MISCELLANEOUS PROVISION
SEC. 301. SEVERABILITY.
If any provision of this Act, an amendment made by this
Act, or the application of such provision or amendment to any
person or circumstance is held to be unconstitutional, the
remainder of this Act, the amendments made by this Act, and
the application of such provisions to any person or
circumstance shall not be affected thereby.
The PRESIDING OFFICER. The Senator from Wyoming.
Mr. ENZI. Mr. President, this is a bill that has been about 5 years
in the works. It was introduced by Senator Snowe, who was joined by
Senators Frist, Gregg, Kennedy, myself, and others. It has been
introduced a number of times, but in 2003 this bill was passed by a
vote of 95 to nothing. The only difference between that bill and the
one before you today is deletion of a provision that makes conforming
changes to the Internal Revenue Code to ensure that a small number of
health insurance plans, known as church plans, do not discriminate on
the basis of genetic information.
We are removing the church plan provision because at the last minute
yesterday a concern was raised that the language caused what is called
a blue slip problem, which relates to the constitutional requirement
that revenue measures originate in the House. There is considerable
disagreement as to whether the church plan provision has a revenue
impact and whether there is, in fact, a blue slip problem. In my
opinion, there is no jurisdictional or constitutional problem with this
simple conforming amendment.
The Health, Education, Labor, and Pensions Committee in the Senate
took great pains to draft the bill within its own jurisdiction and was
disappointed that these concerns were raised at this late date. In the
interest of moving this bill and creating the important protections
that it guarantees, we are removing the questioned language.
It is my understanding and hope that the House of Representatives
will address the question of church plans when it takes up genetic
information nondiscrimination legislation. Certainly no one believes
that health insurance plans run by churches and other religious
organizations should discriminate against individuals on the basis of
genetic information. I am confident that when Congress has worked its
will and delivered a genetic information bill to President Bush, which
he requested, church plans will be treated the same as employer group
health plans and individual health plans.
I am pleased that this bill is finally here for debate and we will be
able to take it through the process. Again, it is an important step
toward eliminating discrimination based on genetic information in both
health insurance and employment decisions.
This bill was reported unanimously last week by the Health,
Education, Labor, and Pensions Committee. It is identical to S. 2283 in
the last Congress, which passed 95 to nothing with strong
administration support. The purpose of this legislation is to protect
individuals from discrimination in health insurance and employment on
the basis of genetic information. It would accomplish this by
preventing health insurers and employers from taking any action that
would affect an employee's health or employment benefits based on
genetic information an employer might discover.
Establishing these protections will allay concerns about the
potential for discrimination, and it will encourage individuals to
participate in genetic research and to take advantage of genetic
testing, new technologies, and new therapies. The legislation will
provide substantial protections to those individuals who may suffer
from actual genetic discrimination now, or may have some reason to be
concerned about it in the future. These steps are essential to
fulfilling the tremendous promise of genetic research and science.
The science of genetic technology has seen an explosion of progress
in the past few years.
Just 2 years ago, for example, scientists at the National Institutes
of Health and elsewhere finally completed assembly of the human genome.
What had seemed impossible for so long came to pass. Suddenly, with
great fanfare and the attention of the international scientific
community, the announcement was made. The human genetic code had been
broken.
Among other effects, the work of the Human Genome Project and sister
efforts elsewhere has accelerated the ability of scientists to discover
genetic ``markers'' for many serious and significant diseases that we
may be able to avoid with the proper care and preventive treatment.
Unfortunately, great change such as this sometimes carries with it
not only great promise, but also a potential for misuse. That occurs
when what should be an exciting breakthrough becomes at the same time a
source of fear. For example, some individuals who should have welcomed
the new ability to test for markers of inherited diseases instead
encountered fear that such information might also be used to deny them
insurance coverage or employment security.
Ironically, for some, what could have been a life-saving tool became
instead a means to harm the very people it was designed to protect. For
too many, it was simply better not to know. Allow me to recount just a
few real-life examples, drawn from testimony before NIH panels
investigating this issue:
One woman, who suffers from a rare liver disorder, found that both
she and her children were rejected by a major insurance company, even
though both children were only passive carriers of the disease and
would never suffer from it. Only after a news organization contacted
the insurer was the denial reversed.
In another example, a woman with a family history of breast cancer
found that she, too, carried the genetic marker for that disease--and
as a result chose to have a precautionary mastectomy and hysterectomy.
After that, her employer received a $13,000 annual increase in his
small company's health insurance bill.
As a result, this woman's employer asked her to switch to her
husband's insurance and told her that if she did so she would get a
raise. Fearing that a switch in coverage would jeopardize her ability
to be covered at all, she refused. The employer then raised the premium
amounts charged to all his employees.
These accounts, and others like them, make the point very strongly
for the need for us to act. Simply put, we need to act now to save
lives.
We have before us today an important bill that will address the fault
in the system and correct it. It was carefully crafted to alleviate the
problems faced by people like those I have mentioned. It was designed
to calm the fears of those who are hesitant to subject themselves to
genetic tests, knowing that what safeguards are in place may prove to
be inadequate. It is a bill to restore their confidence in the system
and their faith that the process is fair.
Only if we pass this legislation now will we truly be able to
encourage the scientific progress in this field. The science of
genetics may well hold our best hope for combating many of our worst
afflictions. However, genetics, like the rest of science, will progress
best when ideas and information are freely exchanged.
As a former small businessman, I am sensitive to the concerns raised
by some in the business community that this legislation might impose
new liabilities on employers. I am confident, however, that after they
become familiar with the provisions of this bill, such critics will see
that it has been carefully written such that its enactment will reduce
the risk that an employer will ever be dragged into court to face a
claim of genetic discrimination.
It will not do this by letting employers and insurers off the hook.
Far from it. Rather, what this bill will do is reduce litigation
because its rules are clear, the exceptions are responsible, and the
procedure is fair.
Simply put, neither will employees become victims of discrimination
nor will employers be sued unreasonably. Why? Because this bill sets a
standard for conduct that is easy to understand and easy to follow. We
are far better off setting the rules of the road clearly and ``up
front,'' rather than allowing them to be set piecemeal through
litigation.
We also must act now to ensure legal uniformity and consistency
nationwide. About half the States today have laws governing genetic
information. However, these laws differ significantly from one another
and do not always fully address the problem.
[[Page S1477]]
Once this legislation is signed into law we will have a clear,
concise and uniform policy on genetic information that will make clear
what is and is not an acceptable use for genetic information.
Over the course of the last Congress, I had the pleasure of working
on this legislation with colleagues on both sides of the aisle. I thank
the majority leader and Senators Snowe, Gregg, Kennedy, Jeffords, and
others for their good efforts to reach a bipartisan agreement on this
bill. It will make a difference in more lives than we will ever know.
If we pass this legislation, and pass it we must, we will have taken
a great step forward and ensured that the initial breakthroughs of Dr.
Watson and Dr. Crick, and the more recent ones by the National Genome
Project, will continue to reap benefits for generations to come.
We will finally have a uniform policy in place to ensure that
information retrieved from genetic testing will remain confidential and
off limits to those who would be tempted to use it to discriminate.
As genetic technology continues to develop in the years to come, the
beneficial impact on the public health and our individual lifestyles
promises to be enormous. Enactment of the bill before us today will
help America secure the realization of that promise.
I yield the floor and reserve the remainder of my time.
The PRESIDING OFFICER. The Senator from Massachusetts.
Mr. KENNEDY. Mr. President, I yield myself 10 minutes.
The PRESIDING OFFICER. The Senator is recognized.
Mr. KENNEDY. Mr. President, first I commend my friend and chairman of
the Health, Education, Labor, and Pensions Committee, Senator Enzi, for
his leadership in reporting out this legislation. As he has outlined,
and as I will speak to in a moment, it is a matter of enormous
importance to millions of Americans. He has outlined the reasons for
that.
When we think back to the time Senator Snowe and others introduced
this legislation a number of years ago, there was a great deal of
apprehension, a great deal of concern, and a good deal of opposition to
this over that period of time. Due to a good deal of very hard,
diligent work by the chairman here, by our staffs, and by many others
on our committees, especially Senator Jeffords and Senator Gregg,
Senator Dodd, Senator Harkin, Senator Clinton, as well as Senator
Olympia Snowe, we are about to successfully pass this legislation in a
very strong bipartisan way, and they deserve great commendation at this
time. I hope that with very strong bipartisan support it will send a
good message to the House of Representatives that it is worthy to be
done, necessary to be done, and has the great and overwhelming support
of the American people. I hope we will see action.
I also thank the majority leader for scheduling this bill and giving
it priority. As all of us know, Bill Frist, a physician, knows the
extraordinary potential of genetic research and its importance in
improving the quality of medical care and in preventing, treating, and
curing disease. I want to express our great appreciation to him for
giving us the opportunity to speak this afternoon, with the completion
of this bill either this evening or tomorrow. We thank him as well.
Throughout our history, the Nation has moved toward a more fair and
more just society, often with great difficulty. Along the way, we had
setbacks, even some failures. But we have had significant triumphs,
too, especially in this past half century.
In 1964 the Congress enacted the Civil Rights Act to end one of the
great evils of our time, discrimination against millions of our fellow
citizens based on their race, color, religion, sex, or national origin.
In 1965 we passed the Voting Rights Act to end discrimination in the
right to vote.
In 1967, we passed another important law prohibiting age
discrimination in employment.
In 1990, we passed the Americans with Disabilities Act to end
discrimination against citizens with mental or physical handicaps.
In 1991, we strengthened the vital protections against job
discrimination established in the 1964 Act.
Today we take another step in our national journey to a fairer and
more just America by approving important legislation to end another
insidious form of bias--discrimination based on the most personal
aspect of any individuals, their unique genetic code.
Four years ago, we celebrated an accomplishment that once seemed
unimaginable--deciphering the entire sequence of the human DNA code.
This amazing accomplishment may well affect the 21st century as
profoundly as the invention of the computer or the splitting of the
atom affected the 20th century.
I personally believe this is the century of the life sciences with
the greatest kind of hope and opportunity for progress in the life
science area.
To cite but one example of why this legislation is so important, it
was this new knowledge that enabled scientists to decipher the DNA
sequence of the SARS virus only weeks after it was first identified.
The extraordinary promise of science to improve health and relieve
suffering is in jeopardy, however, if our laws fail to provide adequate
protections against abuse and misuse of genetic information.
The bipartisan bill the Senate considers today prohibits health
insurers from using genetic information to deny health coverage or
raise premiums.
It bars employers from using genetic information to make employment
decisions. It prohibits insurers and employers from seeking genetic
information, or requesting or requiring individuals to take genetic
tests. It bars disclosure of genetic information by an insurer or
employer, and provides effective remedies so that anyone who has
suffered genetic discrimination can obtain relief.
Congress took an initial step in the right direction when we passed
the Health Insurance Portability and Accountability Act. That landmark
law established important protections to ensure that those who change
their job or lose their job would not also lose their health insurance.
It included also a prohibition on genetic discrimination in group
health insurance.
The pending bill extends that prohibition to many other types of
genetic discrimination, and I commend our colleague from Maine, Senator
Snowe, has been a principal leader on this vital issue for many years.
I also commend our distinguished chairman of the HELP Committee,
Senator Enzi, for his impressive commitment to enacting this needed
legislation by making it one of the very first items for committee
action under his leadership. Other members of our committee have given
time, energy and ideas to this important issue, especially Senator
Jeffords, Senator Gregg, Senator Dodd, and Senator Harkin.
Our majority leader deserves great credit as well. As a physician, he
knows the extraordinary potential of genetic research to improve the
quality of medical care and prevent, treat, and cure disease.
Hopefully, the bipartisan momentum will lead to an enactment of
legislation this year.
Few kinds of information are more personal or more private than a
person's genetic makeup. This information should not be shared by
insurers or employers, or be used in decisions about health coverage or
a job. It should only be used by patients and their doctors to make the
best possible decisions on diagnosis and treatment.
I hope we can all agree that discrimination on the basis of a
person's genetic traits is as unacceptable as discrimination on the
basis of race or religion. No American should be denied health
insurance or fired from a job because of a genetic test.
Last fall, witnesses on a panel of the National Institutes of Health
testified about their first hand accounts of genetic discrimination.
Even though they will never develop the disease, Heidi Williams'
children were denied health insurance coverage because they are
carriers for a genetic disorder. Phil Hardt's children feared
discrimination so much that they sought genetic tests in secret, paying
out of their own pockets and not using their real names.
During hearings in the House, Gary Avary told how his employer, the
Burlington Northern Santa Fe Railroad, required any employee with
carpal tunnel syndrome to have a genetic test. Employees who refused
were threatened with penalties, or even the loss of their jobs.
[[Page S1478]]
Terri Seargent was discharged from her job at a private firm in North
Carolina in 1999, 2 months after beginning very expensive treatment for
a disease that was covered by her employer's health insurance plan.
Since joining her employer in 1996, she had received positive annual
performance ratings and generous annual raises. Yet she lost her job
soon after the special treatment began.
Fear of genetic discrimination also prevents people from having
genetic tests for hereditary cancer, which would provide them with
life-saving information to help them prevent the onset of cancer or
increase the likelihood of early diagnosis. In a recent study, only 57
percent of women decided to undergo testing for mutations in the breast
cancer genes and only 43 percent of those at risk for colon cancer
chose to have genetic testing. People fear cancer, but many also fear
losing their jobs or their health insurance even more.
Experts in genetics are united in calling for strong protections to
prevent this misuse and abuse of science.
The HHS advisory panel on genetic testing--with experts in law,
science, medicine and business--has recommended unambiguously that
federal legislation is needed to prohibit discrimination in employment
or health insurance based on genetic information.
Francis Collins, the leader of the NIH project to sequence the human
genome, said:
Genetic information and genetic technology can be used in
ways that are fundamentally unjust . . . Already, people have
lost their jobs, lost their health insurance, and lost their
economic well-being because of the misuse of genetic
information.
Genetic tests are becoming even cheaper today and more widely
available. If we don't ban discrimination now, it may soon be routine
for employers to use genetic tests to deny jobs to employees, based on
their risk for disease.
When Congress enacts clear protections against genetic discrimination
in employment and health insurance, all Americans will be able to enjoy
the benefits of genetic research, free from the fear that their
personal genetic information will be used against them.
If Congress fails to guarantee that genetic information is used only
for legitimate purposes, we will squander the vast potential of genetic
research to improve the nation's health.
Effective enforcement of the ban will also be essential. It makes no
sense to enact legislation giving the American people the promise of
protection against this form of discrimination, and then deny them the
reality of that protection.
President Bush recognizes the seriousness of this problem, and
supports a ban on genetic discrimination. As he said on June 26, 2001,
``genetic information should be an opportunity to prevent and treat
disease, not an excuse for discrimination. Just as our nation addressed
discrimination based on race, we must now prevent discrimination based
on genetic information.''
I commend the President for his support, and I look forward to
working with the administration to see that a strong bill on genetic
discrimination is signed into law this year.
It is time for Congress to act, and I urge the Senate to pass this
bipartisan bill with the broadest possible support.
I ask unanimous consent to have printed in the Record the strong
statement of the American Academy of Pediatrics. They are concerned
that discrimination will deny families access to health insurance for
their children.
There being no objection, the material was ordered to be printed in
the Record, as follows:
American Academy of Pediatrics,
Elk Grove Village, IL, February 14, 2005.
Hon. Edward Kennedy,
Ranking Member, Committee on Health, Education, Labor and
Pensions, Washington, DC.
Dear Senator Kennedy: The American Academy of Pediatrics,
an organization of 60,000 primary care pediatricians,
pediatric medical subspecialists and pediatric surgical
specialists dedicated to the health and well being of all
infants, children, adolescents, and young adults, would like
to express its strong support for S. 306, the Genetic
Information Nondiscrimination Act.
The American Academy of Pediatrics strongly supports
efforts to enhance, improve and expand the ability to provide
newborn screening, counseling and health care services.
Advances in genetic research promise great strides in the
diagnosis and treatment of many childhood diseases, detected
as early as the newborn period or later in childhood. With
early identification and timely intervention, we have the
ability to significantly reduce morbidity, mortality and
associated disabilities in infants and children affected with
certain genetic, metabolic and infectious conditions.
With these opportunities, however, we also have a
responsibility to ensure that careful consideration is given
to the testing and screening of children so that emerging
technologies are used in ways that promote the best interest
of patients and their families. Potential benefits of genetic
screening and testing are limited by the risks of harm that
may be done by gaining certain genetic information, including
potential for discrimination by insurers and employers.
Furthermore, the American Academy of Pediatrics is concerned
that genetic discrimination is a barrier for families to
access health insurance for their children. More than 9
million children are currently uninsured in this country, and
millions more are underinsured. We will never achieve our
goal of ensuring that every child has health insurance
coverage if genetic discrimination is permitted.
For these reasons, the American Academy of Pediatrics
supports passage of S. 306, which would protect children and
families from genetic discrimination in health insurance and
employment. The American Academy of Pediatrics commends you
for your timely action on this legislation, and looks forward
to working with you toward its passage into law.
Sincerely,
Carol Berkowitz, M.D.,
President.
Mr. KENNEDY. Mr. President, the American Cancer Society supports our
legislation. The American Osteopathic Association says access to health
care should not be restricted on the basis of genetic testing. The
American Society for Human Genetics; the biotechnology industry--all
have made very important statements in support of this legislation,
along with other organizations.
We suggest, for those who are following this debate, to refer to a
July 2004 report titled ``Faces of Genetic Discrimination'' from the
Coalition for Genetic Fairness. This is a wonderful document that I
think has so much information. It lists the wide range of groups
supporting this legislation, including the American Academy of
Pediatrics, the American Cancer Society, the American Medical
Association, the American Osteopathic Association, the American Society
for Human Genetics, the Biotechnology Industry Organization, Hadassah,
the Juvenile Diabetes Research Foundation, the National Organizations
of Rare Disorders, the National Workrights Institute, and the Society
for Women's Health Research. It is a wonderful document that outlines
the history and the opportunity of genetic research and technology.
Mr. ENZI. I yield 10 minutes to the Senator from Maine, Ms. Snowe.
The PRESIDING OFFICER. The Senator from Maine.
Ms. SNOWE. Mr. President, I thank, first and foremost, the chairman
of the Health, Education, Labor, and Pensions Committee, the HELP
Committee, Senator Enzi, for his commitment and for moving this
legislation out of the committee as the first of a group of health-
related bills to be referred out of his committee as the new leader,
the chair of this committee this year. I thank the chairman for doing
so and I express my gratitude to him. This sends a very significant
message to the House of Representatives of the importance and the value
of this initiative. Senator Enzi not only as chair of this committee
but previously was instrumental for participating in negotiations for
more than 16 months to help fashion a consensus on the legislation now
before the Senate and that was enacted through his committee, as well.
I thank him for his leadership that made it possible to bring this
legislation to the Senate.
I also express my appreciation to my colleague on the other side of
the aisle, Senator Kennedy, as ranking member of the HELP Committee,
who has been a longtime champion of protection for an individual's
private health information, dedicating himself over the past year and a
half toward forging a bipartisan solution to this issue.
Also, as a result of the considerable yeoman efforts of the Senate
majority leader, a major breakthrough occurred on this legislative
initiative. The Senate majority leader agreed to the necessity of this
legislation the last few years in making it possible. It was due in
large measure to his stalwart efforts in working with me and others
such as
[[Page S1479]]
Senator Enzi and Senator Kennedy, and Senator Jeffords, who has been a
collaborator on this issue for 8 years, which made it possible to forge
this bipartisan effort. I thank the Senate majority leader because he,
obviously, was pivotal in ensuring we could pave the way for the
passage of this legislation as we did last fall in October with
unanimous support. Hopefully, we will receive the same support for this
initiative today, as well. I thank the leader for giving his support
and vital efforts to making this possible. I thank him for his vision
and tireless support.
Also, I thank Senator Gregg who last year dedicated significant time
and staff resources when he was the previous chair of the committee and
for helping to make it a priority of his committee last year when he
chaired the HELP Committee.
Also, Senator Dodd has been deeply committed to fighting to ensure
that consumers have the strongest possible protections afforded to them
with the passage of this legislation.
Since April of 1996 when I first introduced the Genetic Information
Nondiscrimination Health Insurance Act, along with my colleague,
Senator Jeffords, science has continued to hurtle forward, further
opening the door to early detection and medical intervention through
the discovery and identification of specific genes linked to diseases
such as breast cancer, Huntington's disease, glaucoma, colon cancer,
and cystic fibrosis.
We recognized in 1996 with progress in the field of genetics
accelerating at a breathtaking pace that we must ensure the fast
arriving scientific advances in treatment and prevention of diseases do
not advance a new basis for discrimination. As with countless
scientific breakthroughs in history, the eventual completion of the
genome project not only brought the prospects of medical advances such
as improved detection and earlier intervention but also the potential
for harm and abuse.
Every day since that breakthrough, the American people have been
vulnerable to this type of discrimination. The everyday risk of
discrimination has inhibited the full use of this vast, still untapped
reservoir of knowledge.
As I have said previously, the fear of repercussions from one's
genetic makeup was brought home to me through the real-life experience
of one of my constituents, Bonnie Lee Tucker. In 1997, Bonnie Lee wrote
to me and told me she was too afraid to have the BRCA test for breast
cancer, even though nine women in her immediate family were diagnosed
with breast cancer and she herself was a survivor. She was worried that
knowledge might damage her daughter's ability to obtain insurance in
the future.
Bonnie Lee was not alone in her fear. When the National Institutes of
Health offered women genetic testing, nearly 32 percent of those who
were offered a test for breast cancer risk declined to take it, citing
concerns about health insurance discrimination.
What value is scientific progress if it cannot be applied to those
who would most benefit?
I recall the testimony before Congress of Dr. Francis Collins, the
Director of the National Human Genome Research Institute, without whom
we would not have reached this day. In speaking of the next step for
those involved in the genome project, he explained the project
scientists were engaged in a major endeavor to ``uncover the
connections between particular genes and particular diseases,'' to
apply the knowledge they just unlocked. In order to accomplish this, he
said:
We need a vigorous research enterprise with the involvement
of large numbers of individuals, so that we can draw more
precise connections between a particular spelling of a gene
and a particular outcome.
With all this tremendous potential, this effort cannot reach its full
promise if patients have a reason to feel repercussions of genetic test
results. Given the advances in science, there are two distinct concerns
at hand. The first, of course, is discrimination by health insurance.
The second is employment discrimination based simply upon an
individual's genetic information. This legislation addresses both of
these issues based on the firm foundation of current law.
With regard to health insurance, these are clear and familiar issues
which the Senate has previously debated in the context of larger
patient privacy issues. Indeed, as Congress considered what now is
known as the Health Insurance Portability and Accountability Act of
1996, we also addressed medical information privacy. Moreover, any
legislation that seeks to fully address these issues must consider the
interaction of the new protections with the privacy rule which was
mandated by HIPAA and our legislation which accomplishes just that.
Specifically, we clarify the protections of genetic information as
well as the request to receive a genetic test from being used by the
insurer against the patient. The fact is, genetic information only
detects the potential for genetically linked disease or disorder. And
potential does not equal a diagnosis of disease.
It is critical this information be available to health care
professionals to diagnosis or treat an illness. Without the protection
which this bill offers, patients will not be able to take advantage of
our ever-increasing knowledge of genetics.
On the subject of employment discrimination, unlike our legislative
history in debating health privacy matters, the issue surrounding
protecting genetic information from workplace discrimination is not as
extensive.
To that end, our bipartisan bill institutes these protections in the
workplace. There should be no question of this necessity. Indeed, it is
an imperative. The threat of employment discrimination is not
hypothetical, and therefore it is essential that we take this
information off the table, so to speak, before such abuse becomes
widespread. While Congress has not yet debated this specific type of
employment discrimination, we have considerable case law and
legislative history on which to build.
Indeed, as we considered the necessity for this type of protection,
we agreed that we must extend current discrimination protections to
genetic information. We reviewed current employment discrimination law
and possible remedies for instances of genetic discrimination and
whether they should differ from existing remedies under current law,
such as the American Disabilities Act or the EEOC. This bill creates
new protections by paralleling current law and clarifying the remedies
available to victims of discrimination. So regardless of their
religion, race, or DNA, people will all receive the same protections
under the law. There will be an across-the-board Federal standard which
becomes so critical to fundamental protections under the law.
It has been more than 4 years since the completion of the working
draft of the human genome. Like a book that sits unopened, the wonders
of the human genome are useless if it is compromised by the fear of
discrimination. This legislation is a shining example of what can be
accomplished when we set aside partisan differences in order to address
the challenges facing the American people.
I urge my colleagues to support this legislation. Again, I thank the
chair of the committee for his instrumental and pivotal leadership to
bring this legislation to the floor.
Mr. President, I yield the floor.
The PRESIDING OFFICER. The Senator's time has expired.
The Senator from Wyoming.
Mr. ENZI. Mr. President, I thank the Senator from Maine for her
persistence, her enthusiasm, her perseverance, and particularly her
reasonableness in dealing with this issue, recognizing how important it
is and how important it is to get it done now.
I say to the Senator, you have just done tremendous work at pulling
everybody together. I recognize that effort. Without your efforts, this
would not have been possible. So I thank you for bringing it to this
point.
I yield the floor.
The PRESIDING OFFICER. The Senator from Massachusetts.
Mr. KENNEDY. Mr. President, I yield myself 4 minutes.
I had mentioned earlier the great leadership that the Senator from
Maine has been providing. She has been a noble soul since the very cold
winter when she first introduced this legislation. Now she deserves
great credit that we are at point.
Just on that point, I wish to recognize Representative Slaughter in
the House of Representatives. She has been a great advocate over a long
period of
[[Page S1480]]
time. I want the Senate Record to reflect that.
I also want the Record to reflect the fact that President Clinton
issued an Executive order banning genetic discrimination against
Federal employees in the year 2000. It was limited, obviously, with his
authority and power, to just Federal employees but, nonetheless, it was
a significant step at that time.
I also draw attention to the strong support President Bush has given
to this undertaking. In a radio broadcast, actually in 2001, he stated:
Genetic discrimination is unfair to workers and their
families.
In that same radio broadcast he also stated:
To deny employment or insurance to a healthy person based
only on predisposition violates our country's belief in equal
treatment and individual merit.
We also have the strong letter of support from the Secretary of HHS,
Tommy Thompson, from last year. There is also the statement from the
administration, this year, in support.
I just mention one final point. Out at the National Institutes of
Health, where they really do the best of the research--it is really the
gold standard of research--they have important genetic research out
there. In their information sheet, they have what we call the consent
form. This is the consent form that any individual who wants to
participate in genetic research at NIH signs. It says:
We will not release any information about you or your
family to your insurance company or employer without your
permission. However, instances are known in which genetic
information has been obtained through legal means by third
parties. This may affect you or your family's ability to get
health insurance and/or a job.
Here is the premier workplace in the world doing the most
significant, important research in genetics, which is so incredibly
important, just raising this as a very real potential danger. It will
not be a danger when we get this legislation passed into law.
Finally, I also commend my friend, and our former leader, Senator
Daschle, who had introduced important legislation in 1997 on this very
subject matter. He was one of the early leaders in this battle.
Mr. President, I think we have speakers who are on their way. I
suggest the absence of a quorum.
The PRESIDING OFFICER. The clerk will call the roll.
The assistant legislative clerk proceeded to call the roll.
Mr. ENZI. Madam President, I ask unanimous consent that the order for
the quorum call be rescinded.
The PRESIDING OFFICER (Ms. Snowe). Without objection, it is so
ordered.
Mr. ENZI. Madam President, I yield 3 minutes for purposes of a
colloquy with my friend, the Senator from Oklahoma.
The PRESIDING OFFICER. The Senator from Oklahoma.
Mr. COBURN. Madam President, I thank Senator Enzi and all those who
have worked hard on this bill. I have a few questions in terms of my
concern about prenatal testing.
Do I understand from the remarks of the Senator from Wyoming that
this legislation is directed against a wide range of cases with which
individuals of families may be discriminated against in health
insurance coverage based on the results of genetic tests conducted on
any family member?
Mr. ENZI. Yes, that is correct.
Mr. COBURN. One example of such discrimination cited in the past is
based on prenatal testing. A 1996 report by the National Academy of
Sciences cited a case in which a California HMO threatened to deny
health care coverage to a child because that child, before being born,
antenatal, tested positive for a genetic defect associated with cystic
fibrosis. Would this legislation protect against this type of
discrimination?
Mr. ENZI. Madam President, yes. In the type of situation described,
the legislation would prohibit the insurer from discriminating against
both the mother and the child because of the result of the genetic test
of the child. It is the intent of the legislation to prohibit insurers
from denying coverage to either a child or the child's family members
based on the results of prenatal testing.
Mr. COBURN. I thank the Senator. Based on that interpretation and my
understanding that the Senator will ensure the conference report
includes language that makes clear that a dependent child will be
protected from discrimination under this legislation regardless of when
the genetic information was acquired, including any information gained
from ante- and prenatal testing, I will support the bill. I
congratulate Senator Enzi and thank him for his hard work and for the
colloquy.
Mr. ENZI. Madam President, I thank the Senator from Oklahoma for his
careful concern and the depth with which he has been into the bill and
the vast knowledge he has as a doctor which helps to get all those
different perspectives that bring bills together. We thank him for his
efforts.
I yield myself 6 minutes.
Answering the question of ``why do this bill now'' is very important.
The most persistent question from the business community about this
bill, and the most reasonable, is why now? Why should we create a new
basis for lawsuits for a subject area where there is no record of
abuse, on information that employers do not want or need, to prevent
fear over hypothetical situations? Let me address this critical
question head on because I asked it myself at the onset, and I have
answered it to my satisfaction.
First, we are not legislating in the area of the unknown but in the
area of hope. Genetic information holds the key to better diagnosis,
better cures, better lives for all of the world's population. We have
determined that a serious impediment to this progress is fear, fear
that the information derived from the genetic tests will be used to
harm the individual, fear that the usage of the information is creating
reluctance and that it is leading to refusal to take tests. Every
refused test is progress delayed for all mankind because it is only
through testing that scientists will amass the knowledge to find the
diagnostic tools and cures we so desperately desire. Considering the
potential for discovery and the employer protections we have built into
this legislation, I am confident we have struck the right balance. But
the question remains, why now? Why not wait for greater proof of fear
and abuse?
There are several reasons. For well over half the States, it is not
too early to take action. We are seeing developed a hodgepodge of State
laws that address the handling of genetic information and the banning
of its use in the workplace and in insurance. There are patterns to
these laws, but there are enormous inconsistencies. Likewise, Federal
law is inconsistent. The Americans with Disabilities Act covers genetic
matters if they are ``regarded as'' a disability, but the determination
is subjective and likely to evolve on a case-by-case basis. The Civil
Rights Acts of 1964, as amended in 1991, are also implicated.
In short, many questions remain over what is and what is not covered
by existing Federal and State law. And history has taught us that
unanswered questions breed lawsuits. With this legislation, we seek to
answer questions and prevent litigation. We have the opportunity to
write a clearly defined set of rules for the collection and
preservation of genetic information and carefully proscribe its usage.
That will prevent mistakes and abuse. Before anyone develops the desire
or reason to harm our fellow citizens, a clear-cut set of rules
established at the infancy of this amazing field of science will do
greater good for businesses and insurers and the public than waiting
for common law to develop.
I remind my colleagues and my friends in the private sector that
lawyers are already looking for opportunities to sue for genetic
discrimination under State laws, under the Americans With Disabilities
Act, and under many other laws written for other purposes--hoping to
cash in on this developing area of the law. This is one area where it
is not appropriate to let nature take its course. I am not willing to
abdicate this policymaking function and wait for the courts to decide
on how laws should apply to a field of science that didn't exist when
the laws we are talking about were written. That is the job of
Congress.
It is also important to observe that there are few victims as of yet
in this field of science and law, and that is a good thing. We want to
keep it that way. The rules established in the Genetic Information
Nondiscrimination
[[Page S1481]]
Act are clear and fair. We distinguish between the legitimate and
illegitimate use of genetic information in the workplace. We ensure
confidentiality and make it clear how employers are to do that. And
from my perspective, most importantly, we have included every essential
safeguard and exception to prevent this law from becoming a litigation
nightmare for businesses.
In conclusion, let me state that it is no coincidence that the first
major civil rights bill of this new Congress deals with a truly 21st
century issue. While genetic discrimination may not be widespread at
this time, this legislation ensures that discriminatory practices will
never become common practice.
From the past, we have learned from employees, employers, insurers,
and others all work best together when the rules are clear and
opportunities for personal achievement and health are available. This
legislation tells everyone what is expected of them and avoids the trip
wires and uncertainty of some of our existing laws.
I reserve the remainder of my time. I suggest the absence of a quorum
and ask unanimous consent that the time be equally divided.
The PRESIDING OFFICER (Mr. Coburn). Without objection, it is so
ordered.
The clerk will call the roll.
The assistant legislative clerk proceeded to call the roll.
Mr. ENZI. Mr. President, I ask unanimous consent that the order for
the quorum call be rescinded.
The PRESIDING OFFICER. Without objection, it is so ordered.
Mr. ENZI. Mr. President, I have here a copy of the Genetic
Information Nondiscrimination Act 2003, which was submitted by Senator
Gregg, who was chairman at that time. We did not do a new report this
time. The reason we did not is because the bill has not changed between
then and now.
I strongly urge my colleagues to consult this report, Senate
Committee Report 108-122, not only because of its excellent background
and analysis, but also because it clearly illustrates much of the
thinking and work behind why this bill was drafted as it was.
Mr. President, I ask unanimous consent that a Statement of
Administration Policy, issued today, regarding genetic information be
printed in the Record. The administration favors enactment of the
statement this legislation and this statement gives some explanation.
There being no objection, the material was ordered to be printed in
the Record, as follows:
Executive Office of the President, Office of Management
and Budget,
Washington, DC, February 16, 2005.
Statement of Administration Policy, S. 306--Genetic Information
Nondiscrimination Act of 2005
The administration favors enactment of legislation to
prohibit the improper use of genetic information in health
insurance and employment. The administration supports Senate
passage of S. 306 as reported, which would prohibit group
health plans and health insurers from denying coverage to a
healthy individual or charging that person higher premiums
based solely on a genetic predisposition to developing a
disease in the future. The legislation also would bar
employers from using individuals' genetic information when
making hiring, firing, job placement, or promotion decisions.
The mapping of the human genome has led to more information
about diseases and a better understanding of our genetic
code. Scientists are pursuing new diagnostics, treatments,
and cures based on this information, but the potential misuse
of this information raises serious moral and legal issues.
Concern about unwarranted use of genetic information
threatens access to utilization of existing genetic tests as
well as the ability to conduct further research. The
administration wants to work with Congress to make genetic
discrimination illegal and provide individuals with fair,
reasonable protections against improper use of their genetic
information.
Mr. ENZI. Mr. President, I yield the floor, reserve the remainder of
the time, and suggest the absence of a quorum, and ask that the time be
equally divided.
The PRESIDING OFFICER. Without objection, it is so ordered. The clerk
will call the roll.
The assistant legislative clerk proceeded to call the roll.
Mr. GREGG. Mr. President, I ask unanimous consent the order for the
quorum call be rescinded.
The PRESIDING OFFICER. Without objection, it is so ordered.
Mr. GREGG. Mr. President, I ask unanimous consent I be allowed to
speak for up to 10 minutes on the bill.
The PRESIDING OFFICER. Without objection, it is so ordered.
Mr. GREGG. Mr. President, first I rise to congratulate the Senator
from Wyoming for assuming the chairmanship of the HELP Committee and
moving forward on this exceptionally important piece of information,
the Genetic Information Nondiscrimination Act of 2005. Quickly moving
this legislation forward shows the priority the Senator from Wyoming
places on straightening out our medical situation in this country,
making delivery of health care more affordable, more thoughtful, and in
this case free of discrimination.
This is the first civil rights act, really, of this century, for all
intents and purposes. It is a major commitment to people of our country
that they will not be discriminated against on the basis of their
genetic code. Last year we celebrated the discovery by Dr. Watson and
Dr. Crick of the double helix. Then we also celebrated the fact that
NIH had mapped the human genome, that the DNA project was completed.
Those were huge milestones which have had an exceptional impact on the
quality of health care in this country. They will continue to have an
expanding impact; the breadth and depth of influence on how we deliver
health care and how people's health care is affected within our Nation
cannot even be predicted. That is because, if you can define what your
genetic code is, you can obviously make huge strides toward curing
diseases which might potentially afflict anyone.
But this new science also created issues for us, public policy
issues. One of the big public policy issues it created is the issue of
discrimination based on your genetic code. Everybody has this problem--
or has this benefit--or has this situation. We all have genes. This is
a universal issue. It is something that impacts everyone.
So Congress has taken a long and indepth look at how we should
address this from a public health policy standpoint, working in a very
bipartisan way under the leadership of Senator Enzi. Prior to that, I
was chairman of this committee and we worked on this very aggressively
with help across the aisle, of course, of Senator Kennedy and members
of the Democratic leadership on the committee.
Then, outside the committee itself, Senator Frist and Senator Snowe
and others have played a major role in making sure that what we did in
this area was thoughtful and had a purpose and accomplished the goal.
The goal was to make sure that discrimination did not occur in the
science of the human genome and that the science of the use of this
information that genetics was going to produce could be best
implemented so we didn't end up retarding the development and
implementation of new cures. The goal was to address the concerns of
people relative to their genetic history and the potential it has for
them as they move forward in their lives so they are not impacted
negatively by acts of discrimination which might chill people's
willingness to use this genetic information or even obtain this genetic
information in their interfacing with the health community.
This act is an effort, after a tremendous amount of work, to
thoughtfully and intelligently address the issue of how we effectively
promote the use of genetic information. It actually encouraged people
to take advantage of this new science rather than have an atmosphere
where people are limited or are discouraged from taking advantage of
this new science.
We know, unfortunately, that the potential is there, and it has
actually occurred. We have instances--a few, I admit, but there are
specific instances--of discrimination occurring as a result of the
person's genetic history or potential genetic history in the area of
employment and in the area of health insurance. This is where this bill
addresses those concerns.
It specifically addresses the issue of health insurance underwriting,
and it specifically addresses the issue of employment. Its impact is
that health insurance plans will not be able to deny eligibility for an
employee into a health plan based on genetic information, and it
prohibits health insurance
[[Page S1482]]
plans from charging higher premiums based on an individual's, or his or
her family's, genetic information. It is very important.
It also does not allow an individual health insurance employer to
request genetic information or to use a person's genetic information in
their decisions on the hiring and firing of an individual.
It recognizes that all individuals, whether they are healthy or sick,
and all medical information, whether genetic or otherwise, should be
afforded the same protection under the law. And that is a critical
point.
The practical implication of it is, if you have a family history
where you sense or may think there may be a problem that you have
because of your genetic makeup and you are not going forward and being
tested, your willingness to see a doctor to see if that genetic problem
may actually exist for you is not going to be limited because you are
not going to be concerned with the fact, if that information comes
forward or is obtained that it might be used to limit your ability to
get a job, keep a job, or get health insurance, or keep health
insurance, or, alternatively, that your children or children's children
might also, if the genetic information is confirmed, be subject to
discrimination for work or for obtaining insurance.
It will allow people to be much more aggressive in using this brand
new science to assist them in getting their health in order and making
sure that people and their children are properly screened for what can
be produced from genetic information.
This is going to be such a hugely valuable tool for our society and
for people. There should be nothing in our society which says to people
you really can't afford to do this, because if you take this type of
test, you see this doctor, if you have this type of review, you are
going to find out something that might lead to your quality of life
being dramatically reduced because you lose your job or you lose your
insurance.
The legislation is appropriate. Those who questions its need, do so
out of legitimate concern that it is a new Government law, new Federal
legislation, and they do not see that the problem exists, I guess, in
many instances or, if it does exist, they don't think it is significant
enough to address. To those folks, I would simply say this: Yes, the
problem does exist. Yes, we have instances of discrimination occurring
both in the workplace and in the insurance industry. They have been
limited but, more importantly than that, this is a science which holds
such tremendous potential for dramatically improving the way we deliver
health care as a society that we do not want anything to stand in its
way to chill its use or to undermine the willingness of Americans to
participate in studies of themselves or their families or their
genealogy which might undermine the advantage which this new science
gives them in getting better health care.
It is an appropriate piece of legislation. I think it puts the
emphasis in the right place, which is reasoned and appropriate in how
we handle genetic information and we avoid discrimination in the use of
that information.
Again, I congratulate Senator Enzi for setting this out as the first
item he has moved out of the HELP Committee under his chairmanship. It
reflects his commitment to making sure health care in this country is
not only of a better quality, but that the science that backs up health
care continues to be robust as it pursues cures for all Americans.
I yield the floor.
Mr. ENZI. Mr. President, I thank and congratulate the Senator from
New Hampshire, Mr. Gregg, for his efforts on this bill. He was actually
the committee chairman who made sure that all the parties came
together, which around here is no small task, and came up with this
package that does what our purpose was. He did it with such diligence,
care, and completeness.
Rather than take the time to put out a new committee book about the
bill, we used his book. It gives an explanation, and it also shows that
the bill didn't need to be changed from what he had. So it is actually
Senator Gregg's efforts that brought this bill to the floor and brought
it in this complete fashion and moved it along so quickly. We thank him
for all of his information and help.
I yield the floor.
The PRESIDING OFFICER. The Senator from Iowa.
Mr. HARKIN. Mr. President, we are now considering a bill that I am
pleased to have cosponsored and which I worked on with my colleagues
for a number of years, the Genetic Information Nondiscrimination Act of
2005.
I thank our chairman, Senator Enzi, for expeditiously bringing this
to the floor and guiding it, hopefully, to early passage tomorrow.
I also compliment Senator Snowe on being the chief sponsor of this
bill, and for being in the forefront of this fight to protect people
who want to understand perhaps the predispositions they might have for
any illnesses because of their genetic history.
As we know, the bill makes it illegal for an employer or health
insurer to discriminate against an individual based on genetic
information.
The good news is that advances in genetics have opened major
opportunities for medical programs. We are now able to diagnose and
treat diseases earlier and more efficiently than ever before.
Again, my deepest thanks to Francis Collins for his great leadership
at the National Human Genome Institute, for guiding and directing the
mapping and the sequencing of the human gene. He has provided great
leadership. I have followed it since Dr. Collins first took over, I
think back in 1993, if I am not mistaken. It has just been amazing to
watch this happen.
Some people said it was going to take 15 to 20 years to get this
done, but thanks to Dr. Collins and his leadership and the great staff
that he assembled at the National Human Genome Institute, we completed
the entire mapping and sequencing by April of 2003.
We have this great information. You can go right on the Internet and
you can find it all right there. It is all out there for the entire
world to use. Quite frankly, they are using this genetic information on
the human gene to understand and to do more research into the
background of many of our illnesses that have genetic markers for them.
As a result, we are now able to diagnose and treat diseases earlier
and more efficiently than ever before. I can daresay that in the years
to come we are going to have more and more breakthroughs by scientists
who are using this toolbox--as I have often called it--of genetic
information that we have derived from the mapping and sequencing of the
human genome.
That is the good news. The bad news is that this same genetic
information could be used by employers or insurance companies to
discriminate in hiring or in insurance decisions. Health insurers could
charge higher copayments or deny coverage altogether to individuals who
have a genetic predisposition for certain diseases.
When we passed the Americans With Disabilities Act in 1990, we had
little understanding of the range of genetic information that could be
used by employers and health insurers to discriminate.
The problem is that the ADA does not expressly address genetic
discrimination. What is more, the Supreme Court has made it more
difficult to apply the ADA to discrimination based on the genetic
information.
I think there have been mistaken decisions of the Supreme Court, but,
nonetheless, they have spoken.
It is incumbent upon us to pass legislation to clarify this. That is
what this bill is all about--prohibiting enrollment restrictions and
premium adjustments based on an insurer's ability to determine
someone's genetic makeup. The bill prohibits employers from
discriminating and hiring discrimination.
We want people to access the diagnostic tools scientists and
researchers have and will come up with in the future so they can take
steps to protect themselves to prevent perhaps the onset of an illness
that can be caused by a genetic predisposition. For example, there
could be a genetic marker, as we know, for breast cancer. Both of my
sisters passed away from breast cancer at too early an age. They had
families and their children are grown up; now they have children who
are growing up. Of course, there is a great concern among them about
the genetic background of their mother, or grandmother in this case.
They should, if they want to, be able to access information to better
protect themselves. They should know if they get early screening, early
mammograms, and
[[Page S1483]]
whether they might want to control their diet so they would be more
acutely aware the earlier they detected this, if, God forbid, it should
happen to one of them, that they would be able to address that and to
live full and meaningful lives.
We know if breast cancer is addressed early, the chances of someone
surviving and living a whole, full life is great. So many people do not
detect it early is the problem. We want people to access the diagnostic
tools and not be afraid that if they get this information, they might
lose their job, their health care premiums would go up, that sort of
thing. That is what this bill is about.
I thank my colleague and my friend from Wyoming, the chairman of our
committee, for bringing this expeditiously to the Senate floor.
Hopefully, the House will take steps also to pass it very soon, and we
can send it to the President. It is incumbent upon the House to take
prompt action and get it to the President's desk as soon as possible.
Wellness
While I am here, I diverge a little bit, but not a lot, to briefly
mention an issue that does not relate directly to the provisions of the
bill but does relate to the issue of prevention and the issue of health
and how much money we are spending in this country. I will talk about
the issue of wellness and the role that Government can play in
promoting wellness and prevention in order to help address a crisis in
our health care system, the crisis of exploding costs.
As the Senate takes important bipartisan steps forward to prohibit
discrimination based on genetic information, as we are doing here
today, we can and must take bipartisan steps forward to promote
wellness. We have heard a lot recently about the projected shortfall in
Social Security over the next 75 years of $3.7 trillion. That is a lot
of money in anyone's book. That is over the next 75 years. That pales
compared to the shortfall in Medicare, which is estimated to be $17
trillion. That is the real crisis. Social Security is not a crisis; the
real crisis is Medicare.
It is not only the Federal budget that is being eaten alive, it is
State budgets, family budgets, it is corporate budgets. Look at the
numbers: Some 75 percent of health care costs in the United States are
accounted for by chronic conditions and diseases, many of which are
preventable. Last year, nationally, we spent more than $100 billion on
obesity alone. Medicare and Medicaid picked up almost half that tab.
There was an address the other day by the chairman of General Motors
talking about what it is doing to their company: $1,500 of the cost of
every car they produce is now because of health care insurance costs.
It is unwise uneconomic and totally unsustainable. If we are going to
control Medicare and Medicaid costs and private sector health care
costs as well, we need a significant, even a radical change of course
in our country. We need a fundamental paradigm shift away from a sick
care system. That is what we have now. In other words, if you get sick,
you get care, but there is precious little out there now that
encourages and gives incentives to stay healthy in the first place. We
need a paradigm shift toward preventing disease, promoting good
nutrition, encouraging fitness and wellness. This will be good for the
physical health of the American people, and it will be good for the
fiscal health of government, corporations, private businesses, and
family budgets.
I believe strongly in personal responsibility. I believe people
should take charge of their own health. I also believe in corporate
responsibility, community responsibility, and government
responsibility. I make no bones about it: It is past time for the
Federal Government to step to the plate in a very robust way.
To that end, I introduced the HELP America Act last year, otherwise
known as the Healthier Lifestyle and Prevention Act. This legislation
takes a comprehensive approach to wellness and prevention. It provides
tools and incentives to schools, employers, and communities. It aims to
create better nutrition, physical activity, and mental health
opportunities for kids in schools. I saw some data recently that said
that 80 percent of elementary school kids in America today get less
than 1 hour of physical exercise a week in school. That is
unconscionable. We have to have better physical activity and nutrition
for our kids in school.
The bill creates better nutrition, physical activity, and mental
health opportunities for kids in school. It gives the Federal Trade
Commission authority to regulate unfair marketing to children,
especially junk food. It provides incentives to build paths, safe
sidewalks and bike paths. It requires nutrition labeling on menus in
chain restaurants. It does a lot more than that.
The HELP America Act is comprehensive. It is ambitious. But it is
only at the beginning of a long legislative process. I am confident
over time we can build a bipartisan consensus to move the Federal
Government toward wellness, prevention, away from sickness, more in
keeping people healthy. We have already made some progress.
Several elements of the HELP America Act passed late last year. For
example, we secured $440 million for research at the National
Institutes of Health into the causes and cures of obesity. We sent more
than $50 million in grants to States to fund programs to address
nutrition, physical activity, and obesity. We secured some $114 million
for tobacco prevention and cessation activities at the Centers for
Disease Control and Prevention. We also expanded the fresh fruit and
vegetable program.
Three years ago when we passed the farm bill, I put a provision in
there to test a theory. My theory was if we gave kids in school free
fresh fruits and vegetables--not just at lunch but anytime during the
day--they would eat them, they would like them, they would not be
putting money in the vending machine to buy junk food, they would study
better, they would be better behaved, and everyone would benefit. So we
tried out the theory. We got a small amount of money in the farm bill.
We took 4 States, 25 schools in each State, 100 schools, and 1 Indian
reservation in Arizona. We provided enough money to bring free fresh
fruits and vegetables into these schools. What has happened? In each
one of those schools, it has been a resounding success. Not one of
those schools has asked to be taken off the program. In fact, every
single one of them has asked, please, don't take this away.
We have now gone from four States to nine States. We have gone from
100 schools to a little over 200 schools. It is growing. Visit one of
these schools where these kids get the free fresh fruits and
vegetables.
These little kids in school, at about 9:30 in the morning, get the
``growlies,'' they get a little antsy. If they have an apple to eat or
an orange or a clementine or kiwi fruit or a banana or grapes, or they
get fresh broccoli in the afternoon or cauliflower or carrot sticks,
you would be amazed how much they eat of these fruits and vegetables.
As I said, the teachers love it. The principals find it is a great
system. Even parents now are weighing in. Parents love it. Kids are
even going home and asking their parents to buy these at grocery
stores. Again, I mention that because this is getting to the early
part, getting kids to eat the proper foods, getting them tuned in to
fresh fruits and vegetables at an early age. But there is so much we
have to do. It is time for the Federal Government to start moving in
that direction. If we do not, we are never going to be able to save
Medicare and Medicaid, we are never going to be able to pay for it. It
is going to bust us.
So we have to start preventing, we have to start keeping people
healthy in the first place. That is what this is all about--so that we
have taken some positive steps forward. They are small steps, kind of
baby steps, but I am convinced there is a solid, bipartisan consensus
to pursue this course of wellness and prevention. I know that Senator
Frist has been one of the great leaders in this area of prevention and
wellness. I look forward to working on this agenda with my colleagues
of both parties in the months ahead. I hope we can get a strong,
bipartisan effort.
I hope the President, who, by the way, is a great example of physical
fitness--though I may have some disagreements with the President on
some things, that is one thing I agree with him on. He is good at
physical fitness. He does not smoke. He does not drink.
[[Page S1484]]
As far as I know, he eats well and exercises well.
Wishing Senator Specter Well
Mr. President, I understand this is now on the news wires, so I want
to comment on something that has just come to my attention this
afternoon. I received a call from one of the best friends I have ever
had, a close friend here in the Senate, someone whom I have admired for
his personal qualities as well as for his senatorial qualities for so
many years. I have been privileged to work with him side by side now
going back almost 20 years.
I received a call a little while ago from Senator Specter of
Pennsylvania, who informed me that doctors at the University of
Pennsylvania Hospital had diagnosed him with Hodgkin's disease. Well,
it kind of took my breath away. There is no one for whom I have a
higher regard than Senator Arlen Specter. I think how hard he has
worked to double the funding for NIH for basic research, and then to
have this happen. But he assured me that it is at an early stage. The
doctors have said he has an excellent chance of full recovery and will
be back here very soon after our break next week. He will have to
undergo some treatments, but I understand the doctors say that Arlen
Specter has an excellent chance of full recovery.
I know all of my colleagues wish him the best. Our prayers are with
him. We know he is a strong person. He has a strong will. He is a
person of strong faith. And we know that his will and his faith will
carry him through. I know we will have Senator Specter back here with
us leading the charge to make sure we address the real needs of health
care and biomedical research, to make sure we fulfill our obligations
in education in this country, where he has been a great leader.
Again, Mr. President, we wish Senator Specter well, a full and speedy
recovery, and look forward to having him back here as soon as possible.
With that, Mr. President, I yield the floor.
TITLE XVIII
Mr. GRASSLEY. Mr. President, it has come to my attention that S. 306
includes a provision to amend title XVIII of the Social Security Act.
As chairman of the committee, I am obligated to point out that the
Finance Committee has primary jurisdiction over title XVIII, as
amended. The provision in S. 306 that is within the jurisdiction of the
Finance Committee amends title XVIII relating to Medicare supplemental
policies. I ask Chairman Enzi to acknowledge that the Senate Finance
Committee has jurisdiction over title XVIII of the Social Security Act
and ask that he endeavor to consult on matters before the Health,
Education, Labor & Pensions Committee that touch on the Senate Finance
Committee's jurisdiction.
In order to avoid unnecessary confusion as to the jurisdiction of the
Finance Committee or further delay in the consideration of this bill, I
would agree to accommodate your request to withhold any objection to
the Senate's consideration of S. 306 with the acknowledgment that this
provision and title XVIII generally are in the jurisdiction of the
Finance Committee. This does not represent any waiver of jurisdiction
on the part of the Finance Committee on this subject.
I ask the chairman of the HELP Committee, Senator Enzi, whether he
would agree to this request.
Mr. ENZI. Mr. President, I tell my friend that I do acknowledge that
title XVIII of the Social Security Act is within the jurisdiction of
the Senate Finance Committee. The matter before the Senate makes
amendments to the Employee Retirement and Income Security Act and the
Public Health Service Act. The section to which you have raised
concerns was included as a conforming amendment to ensure consistency
in Federal policy. I want to reassure my friend that I have every
intention of respecting the jurisdiction of all Senate committees and
will endeavor to consult with him on all matters before my committee
that touch on the jurisdiction of the Senate Finance Committee. I ask
my friend to provide me the same courtesy.
Mr. GRASSLEY. I agree and will also endeavor to consult with the
Senator on matters before the Senate Finance Committee that are in the
jurisdiction of the HELP Committee.
Mr. JEFFORDS. Mr. President, all of us are privileged to be living in
an era of unprecedented scientific discovery in the biological
sciences. Since 1953, when James Watson and Francis Crick first
identified the structure of DNA or the double helix we have
relentlessly increased our ability to decipher an individual's
hereditary information. At the time of their discovery, Watson and
Crick said that they had ``found the secret of life'' and to be
certain, life, as we know it, has not been the same since.
Today, we have the entire genetic map--the human genome--that is
revealing a greater understanding of a range of diseases and their
treatment. We also have a much greater capacity to know an individual's
biological destiny as it is encoded in their DNA, which is essentially
a personal genetic blueprint of their current biology as well as a
predictor of their biological future. The benefit of knowing this
information cannot be overstated. It can save countless lives. Part of
the challenge of having this information is to ensure that it not be
used unfairly to influence an individual's sociological destiny.
This is the reason I am joining with Senator Snowe and our other
colleagues in support of S. 306, the Genetic Information
Nondiscrimination Act of 2005. S. 306 will prohibit discrimination
against individuals based on their genetic makeup in both health
insurance and employment. This legislation represents a major
contribution to civil rights law. It is a victory for consumers, health
insurers and health care providers; and it is a victory for employees
and employers. It is the result of almost seven years of effort and it
is identical to a measure that passed the Senate during the 108th
Congress by a vote of 95 to 0.
Together with the much-deserved excitement over the potential of
genetic research, there have also been long-standing concerns that
genetic information, in the wrong hands, could be misused. Many people
have argued that an individual's genetic information which may indicate
a predisposition to a particular disease could be used to deny that
individual health insurance or employment opportunities. The promise of
better health would instead become a potential for greater
discrimination and disadvantage. The Genetic Information
Nondiscrimination Act of 2005 is designed to address those concerns.
Existing antidiscrimination law has been enacted over the years as a
means of correcting longstanding abuses in voter rights, employment,
housing and education. However, under current law a person who has
suffered employment or health insurance discrimination because of their
genetic makeup has very little, if any, recourse to legal remedies.
This legislation addresses this problem by creating new enforceable
rights for individuals similar to those available under existing civil
rights, education and fair employment law.
It is important to note that to date, there has not been a pattern or
clear prevalence of genetic discrimination. However, there is anecdotal
evidence that people have refused to take genetic tests because of
their fear that the predictive information would lead to
discrimination. We know the science is rapidly moving forward and we
are learning more every day about the ``predictive'' correlation
between genetic markers and certain diseases. It is not difficult to
imagine such discrimination occurring in the near future. So in a
sense, we can take that rare opportunity to be ahead of the curve and
enact legislation to preempt discriminatory practices and prevent them
from ever happening.
I believe the compromise legislation we consider today will be
successful in preventing abuses in the insuring of health services and
employment. However, it is extremely important that we remain vigilant
against this type of discrimination from ever getting a foothold in our
society and if this measure proves insufficient and needs to be
strengthened, then we will be back to correct the problems and that
effort will have my support.
As I mentioned earlier, the genesis of this legislation links to many
years of effort on the part of several of our colleagues. My friend,
Senator Snowe, has for many years been the leader of one
[[Page S1485]]
effort in which I was proud to join, together with Senators Frist,
Enzi, Collins and Hagel. In another keystone effort, the previous
minority leader, Senator Daschle, joined with Senators Kennedy, Dodd
and Harkin to delineate the need for employment protections. All have
contributed extensively to a better understanding of the many critical
and complex definitions that are the heart of this legislation. We
could not have been successful last Congress in weaving an agreement
between these bills without the commitment of Senator Gregg, who as
chairman of the HELP Committee during the 108th Congress, devoted his
energies to finding a middle ground that made today's bipartisan
agreements possible. Finally, I commend Senator Enzi, the current
chairman of the HELP Committee, not only because he elevated the
importance of this bill by moving it to the front of the legislative
calendar, but also for the many years of effort he has dedicated to
seeing this measure enacted. It is wholly appropriate that he is there
as chairman to see it cross the legislative finish line.
Mr. President, I am pleased at the willingness both sides have shown
to work through the many difficult aspects of this key issue. Through
many meetings and discussions, we have been able to reach agreements on
an array of important issues that have improved and strengthened the
legislation. I look forward to continuing this cooperative approach as
we move to enact this important and landmark initiative and I urge our
colleagues in the House to pass it in the near. The President supports
this legislation, and it is my hope that we can enact it into law
before the end of this Congress. I urge all of my colleagues to vote in
its favor.
Mrs. CLINTON. I rise today to express my support for S. 306, the
Genetic Nondiscrimination Act. I am proud to be an original cosponsor
of this bill, and I thank Senator Snowe for her leadership on this
issue. I urge my colleagues to vote for passage of this important
legislation.
The Genetic Nondiscrimination Act is a crucial first step to
protecting individuals and families from genetic discrimination. This
legislation prevents insurers from denying coverage or raising premiums
based upon the results of genetic tests. It prohibits insurance
companies and employers from requiring individuals to undergo genetic
testing. And finally, this legislation protects workers from employment
discrimination based on their genetic information.
Genetic testing holds great promise for medicine. Knowing you are
prone to cancer or heart disease or Lou Gehrig's disease may give you a
fighting chance. But just try, with that information in hand, to get
health insurance in a system without strong protections against
discrimination for pre-existing or genetic conditions. As genetic
information allows us to predict illness with greater certainty, these
tests threaten to turn the most susceptible patients into the most
vulnerable.
Each vaunted scientific breakthrough brings with it new challenges to
our health system and this legislation will help maximize advancing
technology's benefits while protecting Americans from the use of
genetic information as a tool for discrimination. With this bill, we
can help patients access the latest advances in science without
sacrificing their personal privacy.
Genetic discrimination has many victims: those who are denied health
coverage, those who lose job opportunities, and those who forego
important tests out of fear that they will be victimized. We should
encourage people to learn more about their health so that they can make
informed decisions about treatment and care, not discourage them from
seeking information with threats of unemployment or loss of insurance.
By passing the Genetic Nondiscrimination Act into law, we will
address at the Federal level an issue that has been recognized by a
majority of states. More than 40 States have enacted genetic
nondiscrimination provisions, and I believe that it is far past the
time for Congress to follow suit.
I would also like to note that the Genetic Nondiscrimination Act,
while a good first step, is only the beginning of our work in this
area. Many who have long championed genetic nondiscrimination support
stronger protections and tough enforcement provisions.
Passing the Genetic Nondiscrimination Act will help to put a
necessary framework in place and we will need the same commitment to
action in the future to reinforce this framework, and provide strong,
reliable enforcement for the important civil right that we are
defending today.
Again, I would urge my colleagues to support the passage of the
Genetic Nondiscrimination Act. I also urge the House to take up this
matter as quickly as possible, to protect the millions of patients that
might benefit from genetic testing.
Mr. CORZINE. Mr. President, I am pleased that today the Senate is
considering legislation designed to prohibit discrimination in health
insurance and employment based on genetic information.
In the last decade, biomedical researchers have made great strides in
genetic research. While these discoveries are critical to researching
treatments and, ultimately, discovering cures for many diseases, this
information also has the potential to be used to deny health care
insurance or employment to an individual who has a genetic
predisposition to an illness. That is why we must make it illegal for
employers and health insurers to discriminate against individuals on
the basis of their genetic information.
S. 306 is an important step, but it is only a first step. Any
legislation addressing this issue must include strong enforcement and
deterrence mechanisms. As this legislation moves forward, I hope its
enforcement provisions will be strengthened. Without strong
accountability provisions, there is little to deter employers and
health insurers from using genetic information inappropriately.
In addition, I hope that when this legislation is conferenced, the
conferees will find ways to strengthen the privacy provisions. It is
essential that our laws keep pace with technological advances and that
we continue to protect the privacy of our citizens. Advances in
technology cannot place fundamental American rights at risk.
Despite my concerns about the enforcement and privacy provisions, I
believe this legislation is a critical first step and look forward to
working with my colleagues to continue addressing the important issue
of genetic discrimination.
Mr. DODD. Mr. President, I rise today to speak in support of S. 306,
the Genetic Information Nondiscrimination Act. Before I talk about why
this bill is so crucial, I want to thank the chairman and ranking
member of the HELP Committee, Senator Enzi and Senator Kennedy, for
their efforts on this bill, and for making it one of their first
priorities in the 109th Congress. Their action sends a strong signal
about the importance of this legislation.
I would be remiss if I did not also mention the dedication to this
issue shown by our former Democratic leader, Senator Tom Daschle. We
are in a position to pass this bill today as a direct result of the
work done by Senator Daschle.
Many of us, on both sides of the aisle, saw the need several years
ago for legally enforceable rules to maximize the potential benefits of
genetic information--and minimize its potential dangers. I have worked
on this issue with many of my colleagues since the 105th Congress. I
have chaired a hearing in the HELP Committee, and I have introduced
legislation with several of my colleagues, notably Senator Daschle,
Senator Kennedy, and Senator Harkin, going back to the 106th Congress.
The legislation that we will consider today is a bipartisan
compromise between our bill, and a similar bill introduced by Senator
Snowe and others. It represents a culmination of the efforts of many of
us to establish such rules. It is an enormous step forward, and I would
like to acknowledge the hard work of everyone who was involved in
crafting this legislation.
Over the past decade, the science of genetics has developed at an
astonishing pace. The mapping of the human genome is undoubtedly one of
the greatest scientific achievements of this generation. We have not
even completely grasped the wide array of potential benefits that may
come from our newfound genetic knowledge.
Certainly, the impact on our health will be profound. Doctors will be
able
[[Page S1486]]
to read our unique genetic blueprints and predict the likelihood of
developing diseases such as cancer, Alzheimer's, or Parkinson's. They
will also be able to use an individual's genetic information to develop
treatments for these same diseases, and target individuals with the
treatment that will work best for them. This is not science fiction. It
is already beginning to happen.
For all the promise of the genetic age, there is also an inherent
threat. Science has outpaced the law and Americans are worried, and
rightly so, that their genetic information will be used--not to improve
their health--but to deny them health insurance or employment. There is
no information more personal and private than genetic information--and
no information more worthy of special protection. Our genetic code is
the very blueprint of our selves. It is with us from birth, and to some
extent it determines who we will become. What an incredibly powerful
tool, with its vast potential to help us live healthier lives. But the
nature of genetic information also makes it dangerous to the individual
if used incorrectly.
This bill provides significant new protections against the misuse of
genetic information. It ensures that Americans who are genetically
predisposed to health conditions will not lose or be denied health
insurance, jobs, or promotions based on their genetic makeup. Reaching
an agreement on this legislation means that our laws dealing with
genetic information can begin to catch up to the reality of our
technological capability in the field.
With these protections in place, individuals need not feel reluctant
to get the tests that may save or improve their lives. Although the
Americans with Disabilities Act, ADA, and the Health Insurance
Portability and Accountability Act, HIPAA, took important steps towards
preventing genetic discrimination, this legislation is more
specifically tailored to prohibiting its misuse. Health plans and
health insurance issuers will not be allowed to underwrite, determine
premiums, or decide on eligibility for enrollment based on genetic
information. Employers will not be allowed to alter hiring practices
based on genetic information. The American public can feel secure in
the knowledge that their genetic blueprint will not be used to harm
them, that a genetic marker indicating a possible illness later in life
will not cause them to lose a job or health insurance.
Like any compromise, this bill is not perfect. In particular, while
it poses some important limitations on the collection of personal
genetic information by insurance companies, it would allow them to
collect this information, without consent, once an individual is
enrolled in a health plan. While insurers are expressly prohibited from
using this information for the purposes of underwriting, I am concerned
that once they have this information, it may be difficult to control
how it is used and who has access to it. We all know from experience
that the difficulty of protecting information increases exponentially
with each additional person who has access to that information. As this
bill becomes law--and I sincerely hope it will--I will monitor closely
how it is implemented, and the extent to which privacy is protected. We
may need to revisit this issue in the future.
Mr. President, despite this shortcoming, I support this bill, as it
represents a vast improvement over current law in many ways. I hope
that it will become law in the very near future. This Chamber passed a
similar bill last year by a vote of 95 to 0. Unfortunately, the House
did not take up this important legislation. I urge them to do so as
soon as possible. We all should feel free to make our health care
decisions based on our health care needs, not based on fear. Today, we
are close to making that goal a reality.
The PRESIDING OFFICER. The Senator from Wyoming.
Mr. ENZI. Mr. President, I ask unanimous consent for an additional 2
minutes to finish this up.
The PRESIDING OFFICER. Without objection, it is so ordered.
Mr. ENZI. Mr. President, I thank the Senator from Iowa and all others
who have spoken today. It has been a very positive day. I thank the
Presiding Officer for the care with which he reviewed this bill and the
issues he brought up and the resolution that I am sure we have gotten.
I would be very remiss if I did not thank the staffs of all of those
people who help us dig into these issues to be sure we are doing the
right thing. They bring some different perspectives that add to coming
up with the right solution.
I particularly thank those people from the committee on both sides of
the aisle for their efforts. I thank Kim Monk, David Thompson, Bill
Pewen, David Bowen, Holly Fechner, Sean Donohue, Ilyse Schuman, Andrew
Patzman, David Nexon, Adam Gluck, Carolyn Holmes, Kate Leone, Ben
Berwick, Jennifer Duck, and Steve Northrup.
I particularly mention Katherine McGuire, who is the new staff
director, who was able to put together all of the personnel we needed
and then a committee retreat, as well as coordinating and moving all
these things along, so we could be at this point this soon.
We thank all those people for their individual efforts as well as the
team efforts they put in.
At this point, I think we are ready to move on. I yield the floor and
thank everybody for their participation.
Amendment No. 13
(Purpose: To provide a complete substitute)
The PRESIDING OFFICER. Under the previous order, amendment No. 13 is
agreed to.
The amendment (No. 13) was agreed to.
(The amendment is printed in today's Record under ``Text of
Amendments.'')
The PRESIDING OFFICER. The substitute, as amended, is agreed to.
The committee amendment in the nature of a substitute, as amended,
was agreed to.
The PRESIDING OFFICER. The clerk will read the bill for the third
time.
The bill was ordered to be engrossed for a third reading and was read
the third time.
Mr. ENZI. Mr. President, I suggest the absence of a quorum.
The PRESIDING OFFICER. The clerk will call the roll.
The legislative clerk proceeded to call the roll.
Mr. FRIST. Mr. President, I ask unanimous consent that the order for
the quorum call be rescinded.
The PRESIDING OFFICER. Without objection, it is so ordered.
____________________