Genetic Information Nondiscrimination Act of 2005 - Amends the Employee Retirement Income Security Act of 1974 (ERISA) and the Public Health Service Act to expand the prohibition against discrimination by group health plans and health insurance issuers in the group and individual markets on the basis of genetic information or services to prohibit: (1) enrollment and premium discrimination based on information about a request for or receipt of genetic services; and (2) requiring genetic testing. Sets forth penalties for violations.
Amends title XVIII (Medicare) of the Social Security Act to prohibit issuers of Medicare supplemental policies from discriminating on the basis of genetic information.
Extends medical privacy and confidentiality rules to the disclosure of genetic information.
Makes it an unlawful employment practice for an employer, employment agency, labor organization, or training program to discriminate against an individual or deprive such individual of employment opportunities because of genetic information. Prohibits the collection and disclosure of genetic information, with certain exceptions.
Establishes a Genetic Nondiscrimination Study Commission to review the developing science of genetics and advise Congress on the advisability of providing for a disparate impact cause of action under this Act.
[Congressional Bills 109th Congress]
[From the U.S. Government Publishing Office]
[H.R. 1227 Introduced in House (IH)]
109th CONGRESS
1st Session
H. R. 1227
To prohibit discrimination on the basis of genetic information with
respect to health insurance and employment.
_______________________________________________________________________
IN THE HOUSE OF REPRESENTATIVES
March 10, 2005
Mrs. Biggert (for herself, Ms. Slaughter, Mr. Ney, Ms. Eshoo, Mr.
Norwood, Mr. Dingell, Mr. Hyde, Mr. George Miller of California, Mrs.
Johnson of Connecticut, Mr. Rangel, Mr. Gillmor, Mr. Owens, Mrs.
Myrick, Mr. Gordon, Mr. Ferguson, Mr. Gene Green of Texas, Mr. Regula,
Mr. Strickland, Mr. Wolf, Mrs. Capps, Mr. Wamp, Mr. Allen, Mr. Ramstad,
Mr. Davis of Florida, Ms. Granger, Mr. Thompson of California, Mr.
Platts, Mr. Lewis of Georgia, Mrs. Jo Ann Davis of Virginia, Mr. Berry,
Mrs. Capito, Mr. Van Hollen, Mr. Saxton, Mr. Michaud, Mr. Boehlert,
Mrs. Maloney, Mr. Shays, and Mr. Kind) introduced the following bill;
which was referred to the Committee on Education and the Workforce, and
in addition to the Committees on Energy and Commerce and Ways and
Means, for a period to be subsequently determined by the Speaker, in
each case for consideration of such provisions as fall within the
jurisdiction of the committee concerned
_______________________________________________________________________
A BILL
To prohibit discrimination on the basis of genetic information with
respect to health insurance and employment.
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 title XVIII of the Social Security Act relating
to medigap.
Sec. 104. Privacy and confidentiality.
Sec. 105. Assuring coordination.
Sec. 106. 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):
``(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
``(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 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. 104. 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. 105. 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 104.
SEC. 106. 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 103, 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 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
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 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.
<all>
Introduced in House
Introduced in House
Sponsor introductory remarks on measure. (CR H1327-1328)
Referred to the Committee on Education and the Workforce, and in addition to the Committees on Energy and Commerce, and Ways and Means, for a period to be subsequently determined by the Speaker, in each case for consideration of such provisions as fall within the jurisdiction of the committee concerned.
Referred to the Committee on Education and the Workforce, and in addition to the Committees on Energy and Commerce, and Ways and Means, for a period to be subsequently determined by the Speaker, in each case for consideration of such provisions as fall within the jurisdiction of the committee concerned.
Referred to the Committee on Education and the Workforce, and in addition to the Committees on Energy and Commerce, and Ways and Means, for a period to be subsequently determined by the Speaker, in each case for consideration of such provisions as fall within the jurisdiction of the committee concerned.
Referred to the Committee on Education and the Workforce, and in addition to the Committees on Energy and Commerce, and Ways and Means, for a period to be subsequently determined by the Speaker, in each case for consideration of such provisions as fall within the jurisdiction of the committee concerned.
Referred to the Subcommittee on Health.
Referred to the Subcommittee on Health, for a period to be subsequently determined by the Chairman.
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Referred to the Subcommittee on Employer-Employee Relations.