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In the Senate of the United States,
April 24, 2008.
Resolved, That the bill from the House of Representa-
tives (H.R. 493) entitled ‘‘An Act to prohibit discrimination
on the basis of genetic information with respect to health in-
surance and employment.’’, do pass with the following
AMENDMENT:
Strike out all after the enacting clause and insert:
SECTION 1. SHORT TITLE; TABLE OF CONTENTS.
(a) SHORT TITLE.—This Act may be cited as the ‘‘Ge-
netic Information Nondiscrimination Act of 2008’’.
(b) TABLE OF CONTENTS.—The table of contents of this
Act is as follows:
Sec. 1. Short title; table of contents.
Sec. 2. Findings.
TITLE I—GENETIC NONDISCRIMINATION IN HEALTH INSURANCE
Sec. 101. Amendments to Employee Retirement Income Security Act of 1974.
Sec. 102. Amendments to the Public Health Service Act.
Sec. 103. Amendments to the Internal Revenue Code of 1986.
Sec. 104. Amendments to title XVIII of the Social Security Act relating to
medigap.
Sec. 105. Privacy and confidentiality.
Sec. 106. Assuring coordination.
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TITLE II—PROHIBITING EMPLOYMENT DISCRIMINATION ON THE
BASIS OF GENETIC INFORMATION
Sec. 201. Definitions.
Sec. 202. Employer practices.
Sec. 203. Employment agency practices.
Sec. 204. Labor organization practices.
Sec. 205. Training programs.
Sec. 206. Confidentiality of genetic information.
Sec. 207. Remedies and enforcement.
Sec. 208. Disparate impact.
Sec. 209. Construction.
Sec. 210. Medical information that is not genetic information.
Sec. 211. Regulations.
Sec. 212. Authorization of appropriations.
Sec. 213. Effective date.
TITLE III—MISCELLANEOUS PROVISIONS
Sec. 301. Severability.
Sec. 302. Child labor protections.
SEC. 2. FINDINGS.
Congress makes the following findings:
(1) Deciphering the sequence of the human ge-
nome 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.
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(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, blind-
ness, and hearing loss, among other conditions. The
first sterilization law was enacted in the State of In-
diana 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 in-
clude essential constitutional requirements of due
process and equal protection. However, the current ex-
plosion 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 re-
sult of that genetic information. This form of dis-
crimination 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-
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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 Na-
tional Sickle Cell Anemia Control Act, which with-
holds Federal funding from States unless sickle cell
testing is voluntary.
(4) Congress has been informed of examples of
genetic discrimination in the workplace. These in-
clude 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 Nor-
man-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 prac-
tice in employment and health insurance.
(5) Federal law addressing genetic discrimina-
tion in health insurance and employment is incom-
plete 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,
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and level of protection. Congress has collected substan-
tial evidence that the American public and the med-
ical 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 po-
tential for discrimination, thereby allowing individ-
uals to take advantage of genetic testing, technologies,
research, and new therapies.
TITLE 
I—GENETIC 
NON-
DISCRIMINATION IN HEALTH
INSURANCE
SEC. 101. AMENDMENTS TO EMPLOYEE RETIREMENT IN-
COME SECURITY ACT OF 1974.
(a) NO DISCRIMINATION IN GROUP PREMIUMS BASED
ON GENETIC INFORMATION.—Section 702(b) of the Em-
ployee Retirement Income Security Act of 1974 (29 U.S.C.
1182(b)) is amended—
(1) in paragraph (2)(A), by inserting before the
semicolon the following: ‘‘except as provided in para-
graph (3)’’; and
(2) by adding at the end the following:
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‘‘(3) NO
GROUP-BASED
DISCRIMINATION
ON
BASIS OF GENETIC INFORMATION.—
‘‘(A) IN
GENERAL.—For purposes of this
section, a group health plan, and a health insur-
ance issuer offering group health insurance cov-
erage in connection with a group health plan,
may not adjust premium or contribution
amounts for the group covered under such plan
on the basis of genetic information.
‘‘(B) RULE OF CONSTRUCTION.—Nothing in
subparagraph (A) or in paragraphs (1) and (2)
of subsection (d) shall be construed to limit the
ability of a health insurance issuer offering
health insurance coverage in connection with a
group health plan to increase the premium for
an employer based on the manifestation of a dis-
ease or disorder of an individual who is enrolled
in the plan. In such case, the manifestation of a
disease or disorder in one individual cannot also
be used as genetic information about other group
members and to further increase the premium for
the employer.’’.
(b) LIMITATIONS ON GENETIC TESTING; PROHIBITION
ON COLLECTION OF GENETIC INFORMATION; APPLICATION
TO ALL PLANS.—Section 702 of the Employee Retirement
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Income Security Act of 1974 (29 U.S.C. 1182) is amended
by adding at the end the following:
‘‘(c) GENETIC TESTING.—
‘‘(1) LIMITATION ON REQUESTING OR REQUIRING
GENETIC
TESTING.—A group health plan, and a
health insurance issuer offering health insurance cov-
erage in connection with a group health plan, shall
not request or require an individual or a family
member of such individual to undergo a genetic test.
‘‘(2) RULE OF CONSTRUCTION.—Paragraph (1)
shall not be construed to limit the authority of a
health care professional who is providing health care
services to an individual to request that such indi-
vidual undergo a genetic test.
‘‘(3) RULE OF CONSTRUCTION REGARDING PAY-
MENT.—
‘‘(A) IN GENERAL.—Nothing in paragraph
(1) shall be construed to preclude a group health
plan, or a health insurance issuer offering health
insurance coverage in connection with a group
health plan, from obtaining and using the results
of a genetic test in making a determination re-
garding payment (as such term is defined for the
purposes of applying the regulations promul-
gated by the Secretary of Health and Human
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Services under part C of title XI of the Social
Security Act and section 264 of the Health In-
surance Portability and Accountability Act of
1996, as may be revised from time to time) con-
sistent with subsection (a).
‘‘(B) LIMITATION.—For purposes of sub-
paragraph (A), a group health plan, or a health
insurance issuer offering health insurance cov-
erage in connection with a group health plan,
may request only the minimum amount of infor-
mation necessary to accomplish the intended
purpose.
‘‘(4) RESEARCH
EXCEPTION.—Notwithstanding
paragraph (1), a group health plan, or a health in-
surance issuer offering health insurance coverage in
connection with a group health plan, may request,
but not require, that a participant or beneficiary un-
dergo a genetic test if each of the following conditions
is met:
‘‘(A) The request is made, in writing, pur-
suant to research that complies with part 46 of
title 45, Code of Federal Regulations, or equiva-
lent Federal regulations, and any applicable
State or local law or regulations for the protec-
tion of human subjects in research.
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‘‘(B) The plan or issuer clearly indicates to
each participant or beneficiary, or in the case of
a minor child, to the legal guardian of such ben-
eficiary, to whom the request is made that—
‘‘(i) compliance with the request is vol-
untary; and
‘‘(ii) non-compliance will have no ef-
fect on enrollment status or premium or
contribution amounts.
‘‘(C) No genetic information collected or ac-
quired under this paragraph shall be used for
underwriting purposes.
‘‘(D) The plan or issuer notifies the Sec-
retary in writing that the plan or issuer is con-
ducting activities pursuant to the exception pro-
vided for under this paragraph, including a de-
scription of the activities conducted.
‘‘(E) The plan or issuer complies with such
other conditions as the Secretary may by regula-
tion require for activities conducted under this
paragraph.
‘‘(d) PROHIBITION ON COLLECTION OF GENETIC IN-
FORMATION.—
‘‘(1) IN GENERAL.—A group health plan, and a
health insurance issuer offering health insurance cov-
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erage in connection with a group health plan, shall
not request, require, or purchase genetic information
for underwriting purposes (as defined in section 733).
‘‘(2) PROHIBITION ON COLLECTION OF GENETIC
INFORMATION
PRIOR
TO
ENROLLMENT.—A group
health plan, and a health insurance issuer offering
health insurance coverage in connection with a group
health plan, shall not request, require, or purchase ge-
netic information with respect to any individual
prior to such individual’s enrollment under the plan
or coverage in connection with such enrollment.
‘‘(3) INCIDENTAL
COLLECTION.—If a group
health plan, or a health insurance issuer offering
health insurance coverage in connection with a group
health plan, obtains genetic information incidental to
the requesting, requiring, or purchasing of other in-
formation concerning any individual, such request,
requirement, or purchase shall not be considered a
violation of paragraph (2) if such request, require-
ment, or purchase is not in violation of paragraph
(1).
‘‘(e) APPLICATION TO ALL PLANS.—The provisions of
subsections (a)(1)(F), (b)(3), (c), and (d), and subsection
(b)(1) and section 701 with respect to genetic information,
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shall apply to group health plans and health insurance
issuers without regard to section 732(a).’’.
(c) APPLICATION
TO GENETIC INFORMATION
OF
A
FETUS OR EMBRYO.—Such section is further amended by
adding at the end the following:
‘‘(f) GENETIC INFORMATION
OF
A FETUS
OR EM-
BRYO.—Any reference in this part to genetic information
concerning an individual or family member of an indi-
vidual shall—
‘‘(1) with respect to such an individual or family
member of an individual who is a pregnant woman,
include genetic information of any fetus carried by
such pregnant woman; and
‘‘(2) with respect to an individual or family
member utilizing an assisted reproductive technology,
include genetic information of any embryo legally
held by the individual or family member.’’.
(d) DEFINITIONS.—Section 733(d) of the Employee
Retirement Income Security Act of 1974 (29 U.S.C.
1191b(d)) is amended by adding at the end the following:
‘‘(5) FAMILY MEMBER.—The term ‘family mem-
ber’ means, with respect to an individual—
‘‘(A) a dependent (as such term is used for
purposes of section 701(f)(2)) of such individual,
and
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‘‘(B) any other individual who is a first-de-
gree, second-degree, third-degree, or fourth-degree
relative of such individual or of an individual
described in subparagraph (A).
‘‘(6) GENETIC INFORMATION.—
‘‘(A) IN GENERAL.—The term ‘genetic infor-
mation’ means, with respect to any individual,
information about—
‘‘(i) such individual’s genetic tests,
‘‘(ii) the genetic tests of family mem-
bers of such individual, and
‘‘(iii) the manifestation of a disease or
disorder in family members of such indi-
vidual.
‘‘(B) INCLUSION OF GENETIC SERVICES AND
PARTICIPATION
IN
GENETIC
RESEARCH.—Such
term includes, with respect to any individual,
any request for, or receipt of, genetic services, or
participation in clinical research which includes
genetic services, by such individual or any fam-
ily member of such individual.
‘‘(C) EXCLUSIONS.—The term ‘genetic infor-
mation’ shall not include information about the
sex or age of any individual.
‘‘(7) GENETIC TEST.—
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‘‘(A) IN GENERAL.—The term ‘genetic test’
means an analysis of human DNA, RNA, chro-
mosomes, 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 metabo-
lites 
that 
does 
not 
detect 
genotypes,
mutations, or chromosomal changes; or
‘‘(ii) an analysis of proteins or me-
tabolites that is directly related to a mani-
fested disease, disorder, or pathological con-
dition that could reasonably be detected by
a health care professional with appropriate
training and expertise in the field of medi-
cine involved.
‘‘(8) GENETIC
SERVICES.—The term ‘genetic
services’ means—
‘‘(A) a genetic test;
‘‘(B) genetic counseling (including obtain-
ing, interpreting, or assessing genetic informa-
tion); or
‘‘(C) genetic education.
‘‘(9) UNDERWRITING PURPOSES.—The term ‘un-
derwriting purposes’ means, with respect to any
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group health plan, or health insurance coverage of-
fered in connection with a group health plan—
‘‘(A) rules for, or determination of, eligi-
bility (including enrollment and continued eligi-
bility) for benefits under the plan or coverage;
‘‘(B) the computation of premium or con-
tribution amounts under the plan or coverage;
‘‘(C) the application of any pre-existing
condition exclusion under the plan or coverage;
and
‘‘(D) other activities related to the creation,
renewal, or replacement of a contract of health
insurance or health benefits.’’.
(e) ERISA ENFORCEMENT.—Section 502 of the Em-
ployee Retirement Income Security Act of 1974 (29 U.S.C.
1132) is amended—
(1) in subsection (a)(6), by striking ‘‘(7), or (8)’’
and inserting ‘‘(7), (8), or (9)’’;
(2) in subsection (b)(3), by striking ‘‘The Sec-
retary’’ and inserting ‘‘Except as provided in sub-
sections (c)(9) and (a)(6) (with respect to collecting
civil penalties under subsection (c)(9)), the Sec-
retary’’; and
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(3) in subsection (c), by redesignating paragraph
(9) as paragraph (10), and by inserting after para-
graph (8) the following new paragraph:
‘‘(9) SECRETARIAL
ENFORCEMENT
AUTHORITY
RELATING TO USE OF GENETIC INFORMATION.—
‘‘(A) GENERAL RULE.—The Secretary may
impose a penalty against any plan sponsor of a
group health plan, or any health insurance
issuer offering health insurance coverage in con-
nection with the plan, for any failure by such
sponsor or issuer to meet the requirements of
subsection (a)(1)(F), (b)(3), (c), or (d) of section
702 or section 701 or 702(b)(1) with respect to
genetic information, in connection with the plan.
‘‘(B) AMOUNT.—
‘‘(i) IN GENERAL.—The amount of the
penalty imposed by subparagraph (A) shall
be $100 for each day in the noncompliance
period with respect to each participant or
beneficiary to whom such failure relates.
‘‘(ii) NONCOMPLIANCE
PERIOD.—For
purposes of this paragraph, the term ‘non-
compliance period’ means, with respect to
any failure, the period—
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reasonable diligence would have known,
that such failure existed.
‘‘(iii) OVERALL LIMITATION FOR UNIN-
TENTIONAL FAILURES.—In the case of fail-
ures which are due to reasonable cause and
not to willful neglect, the penalty imposed
by subparagraph (A) for failures shall not
exceed the amount equal to the lesser of—
‘‘(I) 10 percent of the aggregate
amount paid or incurred by the plan
sponsor (or predecessor plan sponsor)
during the preceding taxable year for
group health plans; or
‘‘(II) $500,000.
‘‘(E) WAIVER BY SECRETARY.—In the case
of a failure which is due to reasonable cause and
not to willful neglect, the Secretary may waive
part or all of the penalty imposed by subpara-
graph (A) to the extent that the payment of such
penalty would be excessive relative to the failure
involved.
‘‘(F) DEFINITIONS.—Terms used in this
paragraph which are defined in section 733 shall
have the meanings provided such terms in such
section.’’.
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(f) REGULATIONS AND EFFECTIVE DATE.—
(1) REGULATIONS.—The Secretary of Labor shall
issue final regulations not later than 12 months after
the date of enactment of this Act to carry out the
amendments made by this section.
(2) EFFECTIVE DATE.—The amendments made
by this section shall apply with respect to group
health plans for plan years beginning after the date
that is 1 year after the date of enactment of this Act.
SEC. 102. AMENDMENTS TO THE PUBLIC HEALTH SERVICE
ACT.
(a) AMENDMENTS RELATING TO THE GROUP MAR-
KET.—
(1) NO
DISCRIMINATION
IN
GROUP
PREMIUMS
BASED ON GENETIC INFORMATION.—Section 2702(b)
of the Public Health Service Act (42 U.S.C. 300gg–
1(b)) is amended—
(A) in paragraph (2)(A), by inserting before
the semicolon the following: ‘‘except as provided
in paragraph (3)’’; and
(B) by adding at the end the following:
‘‘(3) NO
GROUP-BASED
DISCRIMINATION
ON
BASIS OF GENETIC INFORMATION.—
‘‘(A) IN
GENERAL.—For purposes of this
section, a group health plan, and health insur-
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ance issuer offering group health insurance cov-
erage in connection with a group health plan,
may not adjust premium or contribution
amounts for the group covered under such plan
on the basis of genetic information.
‘‘(B) RULE OF CONSTRUCTION.—Nothing in
subparagraph (A) or in paragraphs (1) and (2)
of subsection (d) shall be construed to limit the
ability of a health insurance issuer offering
health insurance coverage in connection with a
group health plan to increase the premium for
an employer based on the manifestation of a dis-
ease or disorder of an individual who is enrolled
in the plan. In such case, the manifestation of a
disease or disorder in one individual cannot also
be used as genetic information about other group
members and to further increase the premium for
the employer.’’.
(2) LIMITATIONS ON GENETIC TESTING; PROHIBI-
TION ON COLLECTION OF GENETIC INFORMATION; AP-
PLICATION TO ALL PLANS.—Section 2702 of the Pub-
lic Health Service Act (42 U.S.C. 300gg–1) is amend-
ed by adding at the end the following:
‘‘(c) GENETIC TESTING.—
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‘‘(1) LIMITATION ON REQUESTING OR REQUIRING
GENETIC
TESTING.—A group health plan, and a
health insurance issuer offering health insurance cov-
erage in connection with a group health plan, shall
not request or require an individual or a family
member of such individual to undergo a genetic test.
‘‘(2) RULE OF CONSTRUCTION.—Paragraph (1)
shall not be construed to limit the authority of a
health care professional who is providing health care
services to an individual to request that such indi-
vidual undergo a genetic test.
‘‘(3) RULE OF CONSTRUCTION REGARDING PAY-
MENT.—
‘‘(A) IN GENERAL.—Nothing in paragraph
(1) shall be construed to preclude a group health
plan, or a health insurance issuer offering health
insurance coverage in connection with a group
health plan, from obtaining and using the results
of a genetic test in making a determination re-
garding payment (as such term is defined for the
purposes of applying the regulations promul-
gated by the Secretary under part C of title XI
of the Social Security Act and section 264 of the
Health Insurance Portability and Accountability
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Act of 1996, as may be revised from time to
time) consistent with subsection (a).
‘‘(B) LIMITATION.—For purposes of sub-
paragraph (A), a group health plan, or a health
insurance issuer offering health insurance cov-
erage in connection with a group health plan,
may request only the minimum amount of infor-
mation necessary to accomplish the intended
purpose.
‘‘(4) RESEARCH
EXCEPTION.—Notwithstanding
paragraph (1), a group health plan, or a health in-
surance issuer offering health insurance coverage in
connection with a group health plan, may request,
but not require, that a participant or beneficiary un-
dergo a genetic test if each of the following conditions
is met:
‘‘(A) The request is made pursuant to re-
search that complies with part 46 of title 45,
Code of Federal Regulations, or equivalent Fed-
eral regulations, and any applicable State or
local law or regulations for the protection of
human subjects in research.
‘‘(B) The plan or issuer clearly indicates to
each participant or beneficiary, or in the case of
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a minor child, to the legal guardian of such ben-
eficiary, to whom the request is made that—
‘‘(i) compliance with the request is vol-
untary; and
‘‘(ii) non-compliance will have no ef-
fect on enrollment status or premium or
contribution amounts.
‘‘(C) No genetic information collected or ac-
quired under this paragraph shall be used for
underwriting purposes.
‘‘(D) The plan or issuer notifies the Sec-
retary in writing that the plan or issuer is con-
ducting activities pursuant to the exception pro-
vided for under this paragraph, including a de-
scription of the activities conducted.
‘‘(E) The plan or issuer complies with such
other conditions as the Secretary may by regula-
tion require for activities conducted under this
paragraph.
‘‘(d) PROHIBITION ON COLLECTION OF GENETIC IN-
FORMATION.—
‘‘(1) IN GENERAL.—A group health plan, and a
health insurance issuer offering health insurance cov-
erage in connection with a group health plan, shall
not request, require, or purchase genetic information
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for underwriting purposes (as defined in section
2791).
‘‘(2) PROHIBITION ON COLLECTION OF GENETIC
INFORMATION
PRIOR
TO
ENROLLMENT.—A group
health plan, and a health insurance issuer offering
health insurance coverage in connection with a group
health plan, shall not request, require, or purchase ge-
netic information with respect to any individual
prior to such individual’s enrollment under the plan
or coverage in connection with such enrollment.
‘‘(3) INCIDENTAL
COLLECTION.—If a group
health plan, or a health insurance issuer offering
health insurance coverage in connection with a group
health plan, obtains genetic information incidental to
the requesting, requiring, or purchasing of other in-
formation concerning any individual, such request,
requirement, or purchase shall not be considered a
violation of paragraph (2) if such request, require-
ment, or purchase is not in violation of paragraph
(1).
‘‘(e) APPLICATION TO ALL PLANS.—The provisions of
subsections (a)(1)(F), (b)(3), (c) , and (d) and subsection
(b)(1) and section 2701 with respect to genetic information,
shall apply to group health plans and health insurance
issuers without regard to section 2721(a).’’.
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(3) APPLICATION TO GENETIC INFORMATION OF A
FETUS OR EMBRYO.—Such section is further amended
by adding at the end the following:
‘‘(f) GENETIC INFORMATION
OF
A FETUS
OR EM-
BRYO.—Any reference in this part to genetic information
concerning an individual or family member of an indi-
vidual shall—
‘‘(1) with respect to such an individual or family
member of an individual who is a pregnant woman,
include genetic information of any fetus carried by
such pregnant woman; and
‘‘(2) with respect to an individual or family
member utilizing an assisted reproductive technology,
include genetic information of any embryo legally
held by the individual or family member.’’.
(4) DEFINITIONS.—Section 2791(d) of the Public
Health Service Act (42 U.S.C. 300gg–91(d)) is
amended by adding at the end the following:
‘‘(15) FAMILY MEMBER.—The term ‘family mem-
ber’ means, with respect to any individual—
‘‘(A) a dependent (as such term is used for
purposes of section 2701(f)(2)) of such indi-
vidual; and
‘‘(B) any other individual who is a first-de-
gree, second-degree, third-degree, or fourth-degree
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relative of such individual or of an individual
described in subparagraph (A).
‘‘(16) GENETIC INFORMATION.—
‘‘(A) IN GENERAL.—The term ‘genetic infor-
mation’ means, with respect to any individual,
information about—
‘‘(i) such individual’s genetic tests,
‘‘(ii) the genetic tests of family mem-
bers of such individual, and
‘‘(iii) the manifestation of a disease or
disorder in family members of such indi-
vidual.
‘‘(B) INCLUSION OF GENETIC SERVICES AND
PARTICIPATION
IN
GENETIC
RESEARCH.—Such
term includes, with respect to any individual,
any request for, or receipt of, genetic services, or
participation in clinical research which includes
genetic services, by such individual or any fam-
ily member of such individual.
‘‘(C) EXCLUSIONS.—The term ‘genetic infor-
mation’ shall not include information about the
sex or age of any individual.
‘‘(17) GENETIC TEST.—
‘‘(A) IN GENERAL.—The term ‘genetic test’
means an analysis of human DNA, RNA, chro-
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mosomes, 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 metabo-
lites 
that 
does 
not 
detect 
genotypes,
mutations, or chromosomal changes; or
‘‘(ii) an analysis of proteins or me-
tabolites that is directly related to a mani-
fested disease, disorder, or pathological con-
dition that could reasonably be detected by
a health care professional with appropriate
training and expertise in the field of medi-
cine involved.
‘‘(18) GENETIC
SERVICES.—The term ‘genetic
services’ means—
‘‘(A) a genetic test;
‘‘(B) genetic counseling (including obtain-
ing, interpreting, or assessing genetic informa-
tion); or
‘‘(C) genetic education.
‘‘(19) UNDERWRITING
PURPOSES.—The term
‘underwriting purposes’ means, with respect to any
group health plan, or health insurance coverage of-
fered in connection with a group health plan—
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‘‘(A) rules for, or determination of, eligi-
bility (including enrollment and continued eligi-
bility) for benefits under the plan or coverage;
‘‘(B) the computation of premium or con-
tribution amounts under the plan or coverage;
‘‘(C) the application of any pre-existing
condition exclusion under the plan or coverage;
and
‘‘(D) other activities related to the creation,
renewal, or replacement of a contract of health
insurance or health benefits.’’.
(5) REMEDIES
AND
ENFORCEMENT.—Section
2722(b) of the Public Health Service Act (42 U.S.C.
300gg–22(b)) is amended by adding at the end the fol-
lowing:
‘‘(3) ENFORCEMENT
AUTHORITY
RELATING
TO
GENETIC DISCRIMINATION.—
‘‘(A) GENERAL
RULE.—In the cases de-
scribed in paragraph (1), notwithstanding the
provisions of paragraph (2)(C), the succeeding
subparagraphs of this paragraph shall apply
with respect to an action under this subsection
by the Secretary with respect to any failure of a
health insurance issuer in connection with a
group health plan, to meet the requirements of
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HR 493 EAS1S
subsection (a)(1)(F), (b)(3), (c), or (d) of section
2702 or section 2701 or 2702(b)(1) with respect
to genetic information in connection with the
plan.
‘‘(B) AMOUNT.—
‘‘(i) IN GENERAL.—The amount of the
penalty imposed under this paragraph shall
be $100 for each day in the noncompliance
period with respect to each participant or
beneficiary to whom such failure relates.
‘‘(ii) NONCOMPLIANCE
PERIOD.—For
purposes of this paragraph, the term ‘non-
compliance period’ means, with respect to
any failure, the period—
‘‘(I) beginning on the date such
failure first occurs; and
‘‘(II) ending on the date the fail-
ure 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—
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that the person otherwise liable for such
penalty did not know, and exercising rea-
sonable diligence would not have known,
that such failure existed.
‘‘(ii) PENALTY NOT TO APPLY TO FAIL-
URES CORRECTED WITHIN CERTAIN PERI-
ODS.—No penalty shall be imposed by sub-
paragraph (A) on any failure if—
‘‘(I) such failure was due to rea-
sonable cause and not to willful ne-
glect; and
‘‘(II) such failure is corrected dur-
ing 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 UNIN-
TENTIONAL FAILURES.—In the case of fail-
ures 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 em-
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HR 493 EAS1S
ployer (or predecessor employer) dur-
ing 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 subpara-
graph (A) to the extent that the payment of such
penalty would be excessive relative to the failure
involved.’’.
(b) AMENDMENT RELATING TO THE INDIVIDUAL MAR-
KET.—
(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 require-
ments) is amended—
(A) by redesignating such subpart as sub-
part 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.—
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‘‘(1) IN GENERAL.—A health insurance issuer of-
fering health insurance coverage in the individual
market may not establish rules for the eligibility (in-
cluding continued eligibility) of any individual to en-
roll in individual health insurance coverage based on
genetic information.
‘‘(2) RULE
OF
CONSTRUCTION.—Nothing in
paragraph (1) or in paragraphs (1) and (2) of sub-
section (e) shall be construed to preclude a health in-
surance issuer from establishing rules for eligibility
for an individual to enroll in individual health insur-
ance coverage based on the manifestation of a disease
or disorder in that individual, or in a family member
of such individual where such family member is cov-
ered under the policy that covers such individual.
‘‘(b) PROHIBITION ON GENETIC INFORMATION IN SET-
TING PREMIUM RATES.—
‘‘(1) IN GENERAL.—A health insurance issuer of-
fering health insurance coverage in the individual
market shall not adjust premium or contribution
amounts for an individual on the basis of genetic in-
formation concerning the individual or a family
member of the individual.
‘‘(2) RULE
OF
CONSTRUCTION.—Nothing in
paragraph (1) or in paragraphs (1) and (2) of sub-
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HR 493 EAS1S
section (e) shall be construed to preclude a health in-
surance issuer from adjusting premium or contribu-
tion amounts for an individual on the basis of a
manifestation of a disease or disorder in that indi-
vidual, or in a family member of such individual
where such family member is covered under the policy
that covers such individual. In such case, the mani-
festation of a disease or disorder in one individual
cannot also be used as genetic information about
other individuals covered under the policy issued to
such individual and to further increase premiums or
contribution amounts.
‘‘(c) PROHIBITION ON GENETIC INFORMATION AS PRE-
EXISTING CONDITION.—
‘‘(1) IN GENERAL.—A health insurance issuer of-
fering health insurance coverage in the individual
market may not, on the basis of genetic information,
impose any preexisting condition exclusion (as de-
fined in section 2701(b)(1)(A)) with respect to such
coverage.
‘‘(2) RULE
OF
CONSTRUCTION.—Nothing in
paragraph (1) or in paragraphs (1) and (2) of sub-
section (e) shall be construed to preclude a health in-
surance issuer from imposing any preexisting condi-
tion exclusion for an individual with respect to health
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insurance coverage on the basis of a manifestation of
a disease or disorder in that individual.
‘‘(d) GENETIC TESTING.—
‘‘(1) LIMITATION ON REQUESTING OR REQUIRING
GENETIC TESTING.—A health insurance issuer offer-
ing health insurance coverage in the individual mar-
ket shall not request or require an individual or a
family member of such individual to undergo a ge-
netic test.
‘‘(2) RULE OF CONSTRUCTION.—Paragraph (1)
shall not be construed to limit the authority of a
health care professional who is providing health care
services to an individual to request that such indi-
vidual undergo a genetic test.
‘‘(3) RULE OF CONSTRUCTION REGARDING PAY-
MENT.—
‘‘(A) IN GENERAL.—Nothing in paragraph
(1) shall be construed to preclude a health insur-
ance issuer offering health insurance coverage in
the individual market from obtaining and using
the results of a genetic test in making a deter-
mination regarding payment (as such term is
defined for the purposes of applying the regula-
tions promulgated by the Secretary under part C
of title XI of the Social Security Act and section
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264 of the Health Insurance Portability and Ac-
countability Act of 1996, as may be revised from
time to time) consistent with subsection (a) and
(c).
‘‘(B) LIMITATION.—For purposes of sub-
paragraph (A), a health insurance issuer offering
health insurance coverage in the individual mar-
ket may request only the minimum amount of
information necessary to accomplish the intended
purpose.
‘‘(4) RESEARCH
EXCEPTION.—Notwithstanding
paragraph (1), a health insurance issuer offering
health insurance coverage in the individual market
may request, but not require, that an individual or
a family member of such individual undergo a genetic
test if each of the following conditions is met:
‘‘(A) The request is made pursuant to re-
search that complies with part 46 of title 45,
Code of Federal Regulations, or equivalent Fed-
eral regulations, and any applicable State or
local law or regulations for the protection of
human subjects in research.
‘‘(B) The issuer clearly indicates to each in-
dividual, or in the case of a minor child, to the
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HR 493 EAS1S
legal guardian of such child, to whom the request
is made that—
‘‘(i) compliance with the request is vol-
untary; and
‘‘(ii) non-compliance will have no ef-
fect on enrollment status or premium or
contribution amounts.
‘‘(C) No genetic information collected or ac-
quired under this paragraph shall be used for
underwriting purposes.
‘‘(D) The issuer notifies the Secretary in
writing that the issuer is conducting activities
pursuant to the exception provided for under this
paragraph, including a description of the activi-
ties conducted.
‘‘(E) The issuer complies with such other
conditions as the Secretary may by regulation
require for activities conducted under this para-
graph.
‘‘(e) PROHIBITION ON COLLECTION OF GENETIC IN-
FORMATION.—
‘‘(1) IN GENERAL.—A health insurance issuer of-
fering health insurance coverage in the individual
market shall not request, require, or purchase genetic
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HR 493 EAS1S
information for underwriting purposes (as defined in
section 2791).
‘‘(2) PROHIBITION ON COLLECTION OF GENETIC
INFORMATION PRIOR TO ENROLLMENT.—A health in-
surance issuer offering health insurance coverage in
the individual market shall not request, require, or
purchase genetic information with respect to any in-
dividual prior to such individual’s enrollment under
the plan in connection with such enrollment.
‘‘(3) INCIDENTAL COLLECTION.—If a health in-
surance issuer offering health insurance coverage in
the individual market obtains genetic information in-
cidental to the requesting, requiring, or purchasing of
other information concerning any individual, such re-
quest, requirement, or purchase shall not be consid-
ered a violation of paragraph (2) if such request, re-
quirement, or purchase is not in violation of para-
graph (1).
‘‘(f) GENETIC INFORMATION
OF
A FETUS
OR EM-
BRYO.—Any reference in this part to genetic information
concerning an individual or family member of an indi-
vidual shall—
‘‘(1) with respect to such an individual or family
member of an individual who is a pregnant woman,
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HR 493 EAS1S
include genetic information of any fetus carried by
such pregnant woman; and
‘‘(2) with respect to an individual or family
member utilizing an assisted reproductive technology,
include genetic information of any embryo legally
held by the individual or family member.’’.
(2) REMEDIES
AND
ENFORCEMENT.—Section
2761(b) of the Public Health Service Act (42 U.S.C.
300gg–61(b)) is amended to read as follows:
‘‘(b) SECRETARIAL ENFORCEMENT AUTHORITY.—The
Secretary shall have the same authority in relation to en-
forcement of the provisions of this part with respect to
issuers of health insurance coverage in the individual mar-
ket 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 enforce-
ment 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 GOV-
ERNMENTAL PLANS TO BE EXCEPTED FROM REQUIRE-
MENTS
CONCERNING
GENETIC
INFORMATION.—Section
2721(b)(2) of the Public Health Service Act (42 U.S.C.
300gg–21(b)(2)) is amended—
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HR 493 EAS1S
(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
RE-
QUIREMENTS
CONCERNING
GENETIC
INFORMA-
TION.—The election described in subparagraph
(A) shall not be available with respect to the pro-
visions of subsections (a)(1)(F), (b)(3), (c), and
(d) of section 2702 and the provisions of sections
2701 and 2702(b) to the extent that such provi-
sions apply to genetic information.’’.
(d) REGULATIONS AND EFFECTIVE DATE.—
(1) REGULATIONS.—Not later than 12 months
after the date of enactment of this Act, the Secretary
of Health and Human Services shall issue final regu-
lations to carry out the amendments made by this sec-
tion.
(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 begin-
ning after the date that is 1 year after the date
of enactment of this Act; and
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HR 493 EAS1S
(B) with respect to health insurance cov-
erage offered, sold, issued, renewed, in effect, or
operated in the individual market after the date
that is 1 year after the date of enactment of this
Act.
SEC. 103. AMENDMENTS TO THE INTERNAL REVENUE CODE
OF 1986.
(a) NO DISCRIMINATION IN GROUP PREMIUMS BASED
ON GENETIC INFORMATION.—Subsection (b) of section 9802
of the Internal Revenue Code of 1986 is amended—
(1) in paragraph (2)(A), by inserting before the
semicolon the following: ‘‘except as provided in para-
graph (3)’’; and
(2) by adding at the end the following:
‘‘(3) NO
GROUP-BASED
DISCRIMINATION
ON
BASIS OF GENETIC INFORMATION.—
‘‘(A) IN
GENERAL.—For purposes of this
section, a group health plan may not adjust pre-
mium or contribution amounts for the group
covered under such plan on the basis of genetic
information.
‘‘(B) RULE OF CONSTRUCTION.—Nothing in
subparagraph (A) or in paragraphs (1) and (2)
of subsection (d) shall be construed to limit the
ability of a group health plan to increase the
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HR 493 EAS1S
premium for an employer based on the mani-
festation of a disease or disorder of an indi-
vidual who is enrolled in the plan. In such case,
the manifestation of a disease or disorder in one
individual cannot also be used as genetic infor-
mation about other group members and to fur-
ther increase the premium for the employer.’’.
(b) LIMITATIONS ON GENETIC TESTING; PROHIBITION
ON COLLECTION OF GENETIC INFORMATION; APPLICATION
TO ALL PLANS.—Section 9802 of such Code is amended by
redesignating subsection (c) as subsection (f) and by insert-
ing after subsection (b) the following new subsections:
‘‘(c) GENETIC TESTING.—
‘‘(1) LIMITATION ON REQUESTING OR REQUIRING
GENETIC TESTING.—A group health plan may not re-
quest or require an individual or a family member of
such individual to undergo a genetic test.
‘‘(2) RULE OF CONSTRUCTION.—Paragraph (1)
shall not be construed to limit the authority of a
health care professional who is providing health care
services to an individual to request that such indi-
vidual undergo a genetic test.
‘‘(3) RULE OF CONSTRUCTION REGARDING PAY-
MENT.—
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HR 493 EAS1S
‘‘(A) IN GENERAL.—Nothing in paragraph
(1) shall be construed to preclude a group health
plan from obtaining and using the results of a
genetic test in making a determination regard-
ing payment (as such term is defined for the
purposes of applying the regulations promul-
gated by the Secretary of Health and Human
Services under part C of title XI of the Social
Security Act and section 264 of the Health In-
surance Portability and Accountability Act of
1996, as may be revised from time to time) con-
sistent with subsection (a).
‘‘(B) LIMITATION.—For purposes of sub-
paragraph (A), a group health plan may request
only the minimum amount of information nec-
essary to accomplish the intended purpose.
‘‘(4) RESEARCH
EXCEPTION.—Notwithstanding
paragraph (1), a group health plan may request, but
not require, that a participant or beneficiary undergo
a genetic test if each of the following conditions is
met:
‘‘(A) The request is made pursuant to re-
search that complies with part 46 of title 45,
Code of Federal Regulations, or equivalent Fed-
eral regulations, and any applicable State or
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HR 493 EAS1S
local law or regulations for the protection of
human subjects in research.
‘‘(B) The plan clearly indicates to each par-
ticipant or beneficiary, or in the case of a minor
child, to the legal guardian of such beneficiary,
to whom the request is made that—
‘‘(i) compliance with the request is vol-
untary; and
‘‘(ii) non-compliance will have no ef-
fect on enrollment status or premium or
contribution amounts.
‘‘(C) No genetic information collected or ac-
quired under this paragraph shall be used for
underwriting purposes.
‘‘(D) The plan notifies the Secretary in
writing that the plan is conducting activities
pursuant to the exception provided for under this
paragraph, including a description of the activi-
ties conducted.
‘‘(E) The plan complies with such other
conditions as the Secretary may by regulation
require for activities conducted under this para-
graph.
‘‘(d) PROHIBITION ON COLLECTION OF GENETIC IN-
FORMATION.—
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‘‘(1) IN GENERAL.—A group health plan shall
not request, require, or purchase genetic information
for underwriting purposes (as defined in section
9832).
‘‘(2) PROHIBITION ON COLLECTION OF GENETIC
INFORMATION
PRIOR
TO
ENROLLMENT.—A group
health plan shall not request, require, or purchase ge-
netic information with respect to any individual
prior to such individual’s enrollment under the plan
or in connection with such enrollment.
‘‘(3) INCIDENTAL
COLLECTION.—If a group
health plan obtains genetic information incidental to
the requesting, requiring, or purchasing of other in-
formation concerning any individual, such request,
requirement, or purchase shall not be considered a
violation of paragraph (2) if such request, require-
ment, or purchase is not in violation of paragraph
(1).
‘‘(e) APPLICATION TO ALL PLANS.—The provisions of
subsections (a)(1)(F), (b)(3), (c), and (d) and subsection
(b)(1) and section 9801 with respect to genetic information,
shall apply to group health plans without regard to section
9831(a)(2).’’.
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HR 493 EAS1S
(c) APPLICATION
TO GENETIC INFORMATION
OF
A
FETUS OR EMBRYO.—Such section is further amended by
adding at the end the following:
‘‘(f) GENETIC INFORMATION
OF
A FETUS
OR EM-
BRYO.—Any reference in this chapter to genetic information
concerning an individual or family member of an indi-
vidual shall—
‘‘(1) with respect to such an individual or family
member of an individual who is a pregnant woman,
include genetic information of any fetus carried by
such pregnant woman; and
‘‘(2) with respect to an individual or family
member utilizing an assisted reproductive technology,
include genetic information of any embryo legally
held by the individual or family member.’’.
(d) DEFINITIONS.—Subsection (d) of section 9832 of
such Code is amended by adding at the end the following:
‘‘(6) FAMILY MEMBER.—The term ‘family mem-
ber’ means, with respect to any individual—
‘‘(A) a dependent (as such term is used for
purposes of section 9801(f)(2)) of such indi-
vidual, and
‘‘(B) any other individual who is a first-de-
gree, second-degree, third-degree, or fourth-degree
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HR 493 EAS1S
relative of such individual or of an individual
described in subparagraph (A).
‘‘(7) GENETIC INFORMATION.—
‘‘(A) IN GENERAL.—The term ‘genetic infor-
mation’ means, with respect to any individual,
information about—
‘‘(i) such individual’s genetic tests,
‘‘(ii) the genetic tests of family mem-
bers of such individual, and
‘‘(iii) the manifestation of a disease or
disorder in family members of such indi-
vidual.
‘‘(B) INCLUSION OF GENETIC SERVICES AND
PARTICIPATION
IN
GENETIC
RESEARCH.—Such
term includes, with respect to any individual,
any request for, or receipt of, genetic services, or
participation in clinical research which includes
genetic services, by such individual or any fam-
ily member of such individual.
‘‘(C) EXCLUSIONS.—The term ‘genetic infor-
mation’ shall not include information about the
sex or age of any individual.
‘‘(8) GENETIC TEST.—
‘‘(A) IN GENERAL.—The term ‘genetic test’
means an analysis of human DNA, RNA, chro-
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HR 493 EAS1S
mosomes, 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 metabo-
lites 
that 
does 
not 
detect 
genotypes,
mutations, or chromosomal changes, or
‘‘(ii) an analysis of proteins or me-
tabolites that is directly related to a mani-
fested disease, disorder, or pathological con-
dition that could reasonably be detected by
a health care professional with appropriate
training and expertise in the field of medi-
cine involved.
‘‘(9) GENETIC
SERVICES.—The term ‘genetic
services’ means—
‘‘(A) a genetic test;
‘‘(B) genetic counseling (including obtain-
ing, interpreting, or assessing genetic informa-
tion); or
‘‘(C) genetic education.
‘‘(10) UNDERWRITING
PURPOSES.—The term
‘underwriting purposes’ means, with respect to any
group health plan, or health insurance coverage of-
fered in connection with a group health plan—
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HR 493 EAS1S
‘‘(A) rules for, or determination of, eligi-
bility (including enrollment and continued eligi-
bility) for benefits under the plan or coverage;
‘‘(B) the computation of premium or con-
tribution amounts under the plan or coverage;
‘‘(C) the application of any pre-existing
condition exclusion under the plan or coverage;
and
‘‘(D) other activities related to the creation,
renewal, or replacement of a contract of health
insurance or health benefits.’’.
(e) ENFORCEMENT.—
(1) IN GENERAL.—Subchapter C of chapter 100
of the Internal Revenue Code of 1986 (relating to gen-
eral provisions) is amended by adding at the end the
following new section:
‘‘SEC. 9834. ENFORCEMENT.
‘‘For the imposition of tax on any failure of a group
health plan to meet the requirements of this chapter, see
section 4980D.’’.
(2) CONFORMING AMENDMENT.—The table of sec-
tions for subchapter C of chapter 100 of such Code is
amended by adding at the end the following new item:
‘‘Sec. 9834. Enforcement.’’.
(f) REGULATIONS AND EFFECTIVE DATE.—
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(1) REGULATIONS.—The Secretary of the Treas-
ury shall issue final regulations or other guidance not
later than 12 months after the date of the enactment
of this Act to carry out the amendments made by this
section.
(2) EFFECTIVE DATE.—The amendments made
by this section shall apply with respect to group
health plans for plan years beginning after the date
that is 1 year after the date of the enactment of this
Act.
SEC. 104. AMENDMENTS TO TITLE XVIII OF THE SOCIAL SE-
CURITY ACT RELATING TO MEDIGAP.
(a) NONDISCRIMINATION.—Section 1882(s)(2) of the
Social Security Act (42 U.S.C. 1395ss(s)(2)) is amended
by adding at the end the following:
‘‘(E) An issuer of a medicare supplemental
policy shall not deny or condition the issuance
or effectiveness of the policy (including the impo-
sition of any exclusion of benefits under the pol-
icy based on a pre-existing condition) and shall
not discriminate in the pricing of the policy (in-
cluding the adjustment of premium rates) of an
individual on the basis of the genetic informa-
tion with respect to such individual.
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HR 493 EAS1S
‘‘(F) RULE OF CONSTRUCTION.—Nothing in
subparagraph (E) or in subparagraphs (A) or
(B) of subsection (x)(2) shall be construed to
limit the ability of an issuer of a medicare sup-
plemental policy from, to the extent otherwise
permitted under this title—
‘‘(i) 
denying 
or 
conditioning 
the
issuance or effectiveness of the policy or in-
creasing the premium for an employer
based on the manifestation of a disease or
disorder of an individual who is covered
under the policy; or
‘‘(ii) increasing the premium for any
policy issued to an individual based on the
manifestation of a disease or disorder of an
individual who is covered under the policy
(in such case, the manifestation of a disease
or disorder in one individual cannot also be
used as genetic information about other
group members and to further increase the
premium for the employer).’’.
(b) LIMITATIONS ON GENETIC TESTING AND GENETIC
INFORMATION.—
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HR 493 EAS1S
(1) IN GENERAL.—Section 1882 of the Social Se-
curity Act (42 U.S.C. 1395ss) is amended by adding
at the end the following:
‘‘(x) LIMITATIONS ON GENETIC TESTING AND INFOR-
MATION.—
‘‘(1) GENETIC TESTING.—
‘‘(A) LIMITATION ON REQUESTING OR RE-
QUIRING
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.—Subpara-
graph (A) shall not be construed to limit the au-
thority of a health care professional who is pro-
viding health care services to an individual to
request that such individual undergo a genetic
test.
‘‘(C) RULE OF CONSTRUCTION REGARDING
PAYMENT.—
‘‘(i) IN
GENERAL.—Nothing in sub-
paragraph (A) shall be construed to pre-
clude an issuer of a medicare supplemental
policy from obtaining and using the results
of a genetic test in making a determination
regarding payment (as such term is defined
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HR 493 EAS1S
for the purposes of applying the regulations
promulgated by the Secretary under part C
of title XI and section 264 of the Health In-
surance Portability and Accountability Act
of 1996, as may be revised from time to
time) consistent with subsection (s)(2)(E).
‘‘(ii) LIMITATION.—For purposes of
clause (i), an issuer of a medicare supple-
mental policy may request only the min-
imum amount of information necessary to
accomplish the intended purpose.
‘‘(D) 
RESEARCH
EXCEPTION.—Notwith-
standing subparagraph (A), an issuer of a medi-
care supplemental policy may request, but not
require, that an individual or a family member
of such individual undergo a genetic test if each
of the following conditions is met:
‘‘(i) The request is made pursuant to
research that complies with part 46 of title
45, Code of Federal Regulations, or equiva-
lent Federal regulations, and any applicable
State or local law or regulations for the
protection of human subjects in research.
‘‘(ii) The issuer clearly indicates to
each individual, or in the case of a minor
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HR 493 EAS1S
child, to the legal guardian of such child, to
whom the request is made that—
‘‘(I) compliance with the request
is voluntary; and
‘‘(II) non-compliance will have no
effect on enrollment status or premium
or contribution amounts.
‘‘(iii) No genetic information collected
or acquired under this subparagraph shall
be used for underwriting, determination of
eligibility to enroll or maintain enrollment
status, premium rating, or the creation, re-
newal, or replacement of a plan, contract,
or coverage for health insurance or health
benefits.
‘‘(iv) The issuer notifies the Secretary
in writing that the issuer is conducting ac-
tivities pursuant to the exception provided
for under this subparagraph, including a
description of the activities conducted.
‘‘(v) The issuer complies with such
other conditions as the Secretary may by
regulation require for activities conducted
under this subparagraph.
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‘‘(2) PROHIBITION ON COLLECTION OF GENETIC
INFORMATION.—
‘‘(A) IN GENERAL.—An issuer of a medicare
supplemental policy shall not request, require, or
purchase genetic information for underwriting
purposes (as defined in paragraph (3)).
‘‘(B) PROHIBITION ON COLLECTION OF GE-
NETIC INFORMATION PRIOR TO ENROLLMENT.—
An issuer of a medicare supplemental policy
shall not request, require, or purchase genetic in-
formation with respect to any individual prior
to such individual’s enrollment under the policy
in connection with such enrollment.
‘‘(C) 
INCIDENTAL
COLLECTION.—If 
an
issuer of a medicare supplemental policy obtains
genetic information incidental to the requesting,
requiring, or purchasing of other information
concerning any individual, such request, require-
ment, or purchase shall not be considered a vio-
lation of subparagraph (B) if such request, re-
quirement, or purchase is not in violation of sub-
paragraph (A).
‘‘(3) DEFINITIONS.—In this subsection:
‘‘(A) FAMILY MEMBER.—The term ‘family
member’ means with respect to an individual,
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any other individual who is a first-degree, sec-
ond-degree, third-degree, or fourth-degree relative
of such individual.
‘‘(B) GENETIC INFORMATION.—
‘‘(i) IN GENERAL.—The term ‘genetic
information’ means, with respect to any in-
dividual, information about—
‘‘(I) 
such 
individual’s 
genetic
tests,
‘‘(II) the genetic tests of family
members of such individual, and
‘‘(III) subject to clause (iv), the
manifestation of a disease or disorder
in family members of such individual.
‘‘(ii) INCLUSION OF GENETIC SERVICES
AND
PARTICIPATION
IN
GENETIC
RE-
SEARCH.—Such term includes, with respect
to any individual, any request for, or re-
ceipt of, genetic services, or participation in
clinical research which includes genetic
services, by such individual or any family
member of such individual.
‘‘(iii) EXCLUSIONS.—The term ‘genetic
information’ shall not include information
about the sex or age of any individual.
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‘‘(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 chro-
mosomal 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 patho-
logical condition that could reasonably
be detected by a health care profes-
sional with appropriate training and
expertise in the field of medicine in-
volved.
‘‘(D) GENETIC
SERVICES.—The term ‘ge-
netic services’ means—
‘‘(i) a genetic test;
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‘‘(ii) genetic counseling (including ob-
taining, interpreting, or assessing genetic
information); or
‘‘(iii) genetic education.
‘‘(E) UNDERWRITING PURPOSES.—The term
‘underwriting purposes’ means, with respect to a
medicare supplemental policy—
‘‘(i) rules for, or determination of, eli-
gibility (including enrollment and contin-
ued eligibility) for benefits under the policy;
‘‘(ii) the computation of premium or
contribution amounts under the policy;
‘‘(iii) the application of any pre-exist-
ing condition exclusion under the policy;
and
‘‘(iv) other activities related to the cre-
ation, renewal, or replacement of a contract
of health insurance or health benefits.
‘‘(F) ISSUER
OF
A
MEDICARE
SUPPLE-
MENTAL POLICY.—The term ‘issuer of a medicare
supplemental policy’ includes a third-party ad-
ministrator or other person acting for or on be-
half of such issuer.’’.
(2) APPLICATION TO GENETIC INFORMATION OF A
FETUS OR EMBRYO.—Section 1882(x) of such Act, as
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added by paragraph (1), is further amended by add-
ing at the end the following:
‘‘(4) GENETIC INFORMATION OF A FETUS OR EM-
BRYO.—Any reference in this section to genetic infor-
mation concerning an individual or family member
of an individual shall—
‘‘(A) with respect to such an individual or
family member of an individual who is a preg-
nant woman, include genetic information of any
fetus carried by such pregnant woman; and
‘‘(B) with respect to an individual or fam-
ily member utilizing an assisted reproductive
technology, include genetic information of any
embryo legally held by the individual or family
member.’’.
(3) CONFORMING AMENDMENT.—Section 1882(o)
of the Social Security Act (42 U.S.C. 1395ss(o)) is
amended by adding at the end the following:
‘‘(4) The issuer of the medicare supplemental
policy complies with subsection (s)(2)(E) and sub-
section (x).’’.
(c) EFFECTIVE DATE.—The amendments made by this
section shall apply with respect to an issuer of a medicare
supplemental policy for policy years beginning on or after
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(3) SECRETARY STANDARDS.—If the NAIC does
not make the modifications described in paragraph
(2) within the period specified in such paragraph, the
Secretary of Health and Human Services shall, not
later than October 1, 2008, make the modifications
described in such paragraph and such revised regula-
tion incorporating the modifications shall be consid-
ered 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 stat-
utes or regulations to conform its regulatory
program to the changes made by this sec-
tion, or
(ii) October 1, 2008.
(B) ADDITIONAL LEGISLATIVE ACTION RE-
QUIRED.—In the case of a State which the Sec-
retary identifies as—
(i) requiring State legislation (other
than legislation appropriating funds) to
conform its regulatory program to the
changes made in this section, but
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(ii) having a legislature which is not
scheduled to meet in 2008 in a legislative
session in which such legislation may be
considered, the date specified in this para-
graph is the first day of the first calendar
quarter beginning after the close of the first
legislative session of the State legislature
that begins on or after July 1, 2008. For
purposes of the previous sentence, in the
case of a State that has a 2-year legislative
session, each year of such session shall be
deemed to be a separate regular session of
the State legislature.
SEC. 105. PRIVACY AND CONFIDENTIALITY.
(a) IN GENERAL.—Part C of title XI of the Social Se-
curity Act is amended by adding at the end the following
new section:
‘‘APPLICATION OF HIPAA REGULATIONS TO GENETIC
INFORMATION
‘‘SEC. 1180. (a) IN GENERAL.—The Secretary shall re-
vise the HIPAA privacy regulation (as defined in sub-
section (b)) so it is consistent with the following:
‘‘(1) Genetic information shall be treated as
health information described in section 1171(4)(B).
‘‘(2) The use or disclosure by a covered entity
that is a group health plan, health insurance issuer
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that issues health insurance coverage, or issuer of a
medicare supplemental policy of protected health in-
formation that is genetic information about an indi-
vidual for underwriting purposes under the group
health plan, health insurance coverage, or medicare
supplemental policy shall not be a permitted use or
disclosure.
‘‘(b) DEFINITIONS.—For purposes of this section:
‘‘(1) GENETIC
INFORMATION; GENETIC
TEST;
FAMILY MEMBER.—The terms ‘genetic information’,
‘genetic test’, and ‘family member’ have the meanings
given such terms in section 2791 of the Public Health
Service Act (42 U.S.C. 300gg–91), as amended by the
Genetic Information Nondiscrimination Act of 2007.
‘‘(2) GROUP HEALTH PLAN; HEALTH INSURANCE
COVERAGE; MEDICARE SUPPLEMENTAL POLICY.—The
terms ‘group health plan’ and ‘health insurance cov-
erage’ have the meanings given such terms under sec-
tion 2791 of the Public Health Service Act (42 U.S.C.
300gg–91), and the term ‘medicare supplemental pol-
icy’ has the meaning given such term in section
1882(g).
‘‘(3) HIPAA PRIVACY REGULATION.—The term
‘HIPAA privacy regulation’ means the regulations
promulgated by the Secretary under this part and
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section 264 of the Health Insurance Portability and
Accountability Act of 1996 (42 U.S.C. 1320d–2 note).
‘‘(4) UNDERWRITING PURPOSES.—The term ‘un-
derwriting purposes’ means, with respect to a group
health plan, health insurance coverage, or a medicare
supplemental policy—
‘‘(A) rules for, or determination of, eligi-
bility (including enrollment and continued eligi-
bility) for, or determination of, benefits under
the plan, coverage, or policy;
‘‘(B) the computation of premium or con-
tribution amounts under the plan, coverage, or
policy;
‘‘(C) the application of any pre-existing
condition exclusion under the plan, coverage, or
policy; and
‘‘(D) other activities related to the creation,
renewal, or replacement of a contract of health
insurance or health benefits.
‘‘(c) PROCEDURE.—The revisions under subsection (a)
shall be made by notice in the Federal Register published
not later than 60 days after the date of the enactment of
this section and shall be effective upon publication, without
opportunity for any prior public comment, but may be re-
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vised, consistent with this section, after opportunity for
public comment.
‘‘(d) ENFORCEMENT.—In addition to any other sanc-
tions or remedies that may be available under law, a cov-
ered entity that is a group health plan, health insurance
issuer, or issuer of a medicare supplemental policy and that
violates the HIPAA privacy regulation (as revised under
subsection (a) or otherwise) with respect to the use or disclo-
sure of genetic information shall be subject to the penalties
described in sections 1176 and 1177 in the same manner
and to the same extent that such penalties apply to viola-
tions of this part.’’.
(b) REGULATIONS; EFFECTIVE DATE.—
(1) REGULATIONS.—Not later than 12 months
after the date of the enactment of this Act, the Sec-
retary of Health and Human Services shall issue
final regulations to carry out the revision required by
section 1180(a) of the Social Security Act, as added
by subsection (a). The Secretary has the sole authority
to promulgate such regulations, but shall promulgate
such regulations in consultation with the Secretaries
of Labor and the Treasury.
(2) EFFECTIVE DATE.—The amendment made by
subsection (a) shall take effect on the date that is 1
year after the date of the enactment of this Act.
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SEC. 106. ASSURING COORDINATION.
Except as provided in section 105(b)(1), the Secretary
of Health and Human Services, the Secretary of Labor, and
the Secretary of the Treasury shall ensure, through the exe-
cution 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 respon-
sibility under this title (and the amendments made by
this title) are administered so as to have the same ef-
fect at all times; and
(2) coordination of policies relating to enforcing
the same requirements through such Secretaries in
order to have a coordinated enforcement strategy that
avoids duplication of enforcement efforts and assigns
priorities in enforcement.
TITLE II—PROHIBITING EMPLOY-
MENT 
DISCRIMINATION 
ON
THE BASIS OF GENETIC IN-
FORMATION
SEC. 201. DEFINITIONS.
In this title:
(1) 
COMMISSION.—The 
term 
‘‘Commission’’
means the Equal Employment Opportunity Commis-
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sion as created by section 705 of the Civil Rights Act
of 1964 (42 U.S.C. 2000e–4).
(2) EMPLOYEE; EMPLOYER; EMPLOYMENT AGEN-
CY; LABOR ORGANIZATION; MEMBER.—
(A) IN
GENERAL.—The term ‘‘employee’’
means—
(i) an employee (including an appli-
cant), 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.
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(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 em-
ployee 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 Account-
ability 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 ORGANI-
ZATION.—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 ap-
plicant for membership in a labor organization.
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(3) FAMILY MEMBER.—The term ‘‘family mem-
ber’’ means, with respect to an individual—
(A) a dependent (as such term is used for
purposes of section 701(f)(2) of the Employee Re-
tirement Income Security Act of 1974) of such
individual, and
(B) any other individual who is a first-de-
gree, second-degree, third-degree, or fourth-degree
relative of such individual or of an individual
described in subparagraph (A).
(4) GENETIC INFORMATION.—
(A) IN GENERAL.—The term ‘‘genetic infor-
mation’’ means, with respect to any individual,
information about—
(i) such individual’s genetic tests,
(ii) the genetic tests of family members
of such individual, and
(iii) the manifestation of a disease or
disorder in family members of such indi-
vidual.
(B) INCLUSION OF GENETIC SERVICES AND
PARTICIPATION
IN
GENETIC
RESEARCH.—Such
term includes, with respect to any individual,
any request for, or receipt of, genetic services, or
participation in clinical research which includes
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genetic services, by such individual or any fam-
ily member of such individual.
(C) EXCLUSIONS.—The term ‘‘genetic infor-
mation’’ shall not include information about the
sex or age of any individual.
(5) GENETIC MONITORING.—The term ‘‘genetic
monitoring’’ means the periodic examination of em-
ployees to evaluate acquired modifications to their ge-
netic material, such as chromosomal damage or evi-
dence of increased occurrence of mutations, that may
have developed in the course of employment due to ex-
posure to toxic substances in the workplace, in order
to identify, evaluate, and respond to the effects of or
control adverse environmental exposures in the work-
place.
(6) GENETIC SERVICES.—The term ‘‘genetic serv-
ices’’ means—
(A) a genetic test;
(B) genetic counseling (including obtaining,
interpreting, or assessing genetic information);
or
(C) genetic education.
(7) GENETIC TEST.—
(A) IN GENERAL.—The term ‘‘genetic test’’
means an analysis of human DNA, RNA, chro-
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mosomes, proteins, or metabolites, that detects
genotypes, mutations, or chromosomal changes.
(B) EXCEPTIONS.—The term ‘‘genetic test’’
does not mean an analysis of proteins or metabo-
lites that does not detect genotypes, mutations, or
chromosomal changes.
SEC. 202. EMPLOYER PRACTICES.
(a) DISCRIMINATION BASED ON GENETIC INFORMA-
TION.—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 em-
ployee, because of genetic information with respect to
the employee; or
(2) to limit, segregate, or classify the employees
of the employer in any way that would deprive or
tend to deprive any employee of employment opportu-
nities or otherwise adversely affect the status of the
employee as an employee, because of genetic informa-
tion with respect to the employee.
(b) ACQUISITION OF GENETIC INFORMATION.—It shall
be an unlawful employment practice for an employer to re-
quest, require, or purchase genetic information with respect
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to an employee or a family member of the employee
except—
(1) where an employer inadvertently requests or
requires family medical history of the employee or
family member of the employee;
(2) where—
(A) health or genetic services are offered by
the employer, including such services offered as
part of a wellness program;
(B) the employee provides prior, knowing,
voluntary, and written authorization;
(C) only the employee (or family member if
the family member is receiving genetic services)
and the licensed health care professional or board
certified genetic counselor involved in providing
such services receive individually identifiable in-
formation concerning the results of such services;
and
(D) any individually identifiable genetic
information provided under subparagraph (C) in
connection with the services provided under sub-
paragraph (A) is only available for purposes of
such services and shall not be disclosed to the em-
ployer except in aggregate terms that do not dis-
close the identity of specific employees;
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(3) where an employer requests or requires fam-
ily medical history from the employee to comply with
the certification provisions of section 103 of the Fam-
ily and Medical Leave Act of 1993 (29 U.S.C. 2613)
or such requirements under State family and medical
leave laws;
(4) where an employer purchases documents that
are commercially and publicly available (including
newspapers, magazines, periodicals, and books, but
not including medical databases or court records) that
include family medical history;
(5) where the information involved is to be used
for genetic monitoring of the biological effects of toxic
substances in the workplace, but only if—
(A) the employer provides written notice of
the genetic monitoring to the employee;
(B)(i) the employee provides prior, know-
ing, 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 reg-
ulations, including any such regulations
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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 regula-
tions, in the case of a State that is imple-
menting 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 moni-
toring program, receives the results of the moni-
toring only in aggregate terms that do not dis-
close the identity of specific employees; or
(6) where the employer conducts DNA analysis
for law enforcement purposes as a forensic laboratory,
and such analysis is included in the Combined DNA
Index System pursuant to section 210304 of the Vio-
lent Crime Control and Law Enforcement Act of 1994
(42 U.S.C. 14132), and requests or requires genetic
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information of such employer’s employees, but only to
the extent that such genetic information is used for
analysis of DNA identification markers for quality
control to detect sample contamination.
(c) PRESERVATION OF PROTECTIONS.—In the case of
information to which any of paragraphs (1) through (6)
of subsection (b) applies, such information may not be used
in violation of paragraph (1) or (2) of subsection (a) or
treated or disclosed in a manner that violates section 206.
SEC. 203. EMPLOYMENT AGENCY PRACTICES.
(a) DISCRIMINATION BASED ON GENETIC INFORMA-
TION.—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 be-
cause of genetic information with respect to the indi-
vidual;
(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 em-
ployee, because of genetic information with respect to
the individual; or
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(3) to cause or attempt to cause an employer to
discriminate against an individual in violation of
this title.
(b) ACQUISITION OF GENETIC INFORMATION.—It shall
be an unlawful employment practice for an employment
agency to request, require, or purchase genetic information
with respect to an individual or a family member of the
individual except—
(1) where an employment agency inadvertently
requests or requires family medical history of the in-
dividual or family member of the individual;
(2) where—
(A) health or genetic services are offered by
the employment agency, including such services
offered as part of a wellness program;
(B) the individual provides prior, knowing,
voluntary, and written authorization;
(C) only the individual (or family member
if the family member is receiving genetic serv-
ices) and the licensed health care professional or
board certified genetic counselor involved in pro-
viding such services receive individually identifi-
able information concerning the results of such
services; and
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(D) any individually identifiable genetic
information provided under subparagraph (C) in
connection with the services provided under sub-
paragraph (A) is only available for purposes of
such services and shall not be disclosed to the em-
ployment agency except in aggregate terms that
do not disclose the identity of specific individ-
uals;
(3) where an employment agency requests or re-
quires 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 doc-
uments 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 indi-
vidual;
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(B)(i) the individual provides prior, know-
ing, 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 reg-
ulations, 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 regula-
tions, in the case of a State that is imple-
menting 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 cer-
tified genetic counselor that is involved in the ge-
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netic monitoring program, receives the results of
the monitoring only in aggregate terms that do
not disclose the identity of specific individuals.
(c) PRESERVATION OF PROTECTIONS.—In the case of
information to which any of paragraphs (1) through (5)
of subsection (b) applies, such information may not be used
in violation of paragraph (1), (2), or (3) of subsection (a)
or treated or disclosed in a manner that violates section
206.
SEC. 204. LABOR ORGANIZATION PRACTICES.
(a) DISCRIMINATION BASED ON GENETIC INFORMA-
TION.—It shall be an unlawful employment practice for a
labor organization—
(1) to exclude or to expel from the membership
of the organization, or otherwise to discriminate
against, any member because of genetic information
with respect to the member;
(2) to limit, segregate, or classify the members of
the organization, or fail or refuse to refer for employ-
ment any member, in any way that would deprive or
tend to deprive any member of employment opportu-
nities, or otherwise adversely affect the status of the
member as an employee, because of genetic informa-
tion with respect to the member; or
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(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 organiza-
tion to request, require, or purchase genetic information
with respect to a member or a family member of the member
except—
(1) where a labor organization inadvertently re-
quests or requires family medical history of the mem-
ber or family member of the member;
(2) where—
(A) health or genetic services are offered by
the labor organization, including such services
offered as part of a wellness program;
(B) the member provides prior, knowing,
voluntary, and written authorization;
(C) only the member (or family member if
the family member is receiving genetic services)
and the licensed health care professional or board
certified genetic counselor involved in providing
such services receive individually identifiable in-
formation concerning the results of such services;
and
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(D) any individually identifiable genetic
information provided under subparagraph (C) in
connection with the services provided under sub-
paragraph (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 re-
quires 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 docu-
ments 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
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(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 reg-
ulations, 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 regula-
tions, in the case of a State that is imple-
menting 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 cer-
tified genetic counselor that is involved in the ge-
netic monitoring program, receives the results of
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the monitoring only in aggregate terms that do
not disclose the identity of specific members.
(c) PRESERVATION OF PROTECTIONS.—In the case of
information to which any of paragraphs (1) through (5)
of subsection (b) applies, such information may not be used
in violation of paragraph (1), (2), or (3) of subsection (a)
or treated or disclosed in a manner that violates section
206.
SEC. 205. TRAINING PROGRAMS.
(a) DISCRIMINATION BASED ON GENETIC INFORMA-
TION.—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 be-
cause of genetic information with respect to the indi-
vidual in admission to, or employment in, any pro-
gram 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 employ-
ment opportunities, or otherwise adversely affect the
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status of the individual as an employee, because of ge-
netic information with respect to the individual; or
(3) to cause or attempt to cause an employer to
discriminate against an applicant for or a partici-
pant in such apprenticeship or other training or re-
training 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 de-
scribed in subsection (a) to request, require, or purchase ge-
netic information with respect to an individual or a family
member of the individual except—
(1) where the employer, labor organization, or
joint labor-management committee inadvertently re-
quests or requires family medical history of the indi-
vidual or family member of the individual;
(2) where—
(A) health or genetic services are offered by
the employer, labor organization, or joint labor-
management committee, including such services
offered as part of a wellness program;
(B) the individual provides prior, knowing,
voluntary, and written authorization;
(C) only the individual (or family member
if the family member is receiving genetic serv-
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books, but not including medical databases or court
records) that include family medical history;
(5) where the information involved is to be used
for genetic monitoring of the biological effects of toxic
substances in the workplace, but only if—
(A) the employer, labor organization, or
joint 
labor-management 
committee 
provides
written notice of the genetic monitoring to the
individual;
(B)(i) the individual provides prior, know-
ing, 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 reg-
ulations, 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
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(ii) State genetic monitoring regula-
tions, in the case of a State that is imple-
menting 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 individ-
uals; or
(6) where the employer conducts DNA analysis
for law enforcement purposes as a forensic laboratory,
and such analysis is included in the Combined DNA
Index System pursuant to section 210304 of the Vio-
lent Crime Control and Law Enforcement Act of 1994
(42 U.S.C. 14132), and requests or requires genetic
information of such employer’s apprentices or train-
ees, but only to the extent that such genetic informa-
tion is used for analysis of DNA identification mark-
ers for quality control to detect sample contamina-
tion.
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(c) PRESERVATION OF PROTECTIONS.—In the case of
information to which any of paragraphs (1) through (6)
of subsection (b) applies, such information may not be used
in violation of paragraph (1), (2), or (3) of subsection (a)
or treated or disclosed in a manner that violates section
206.
SEC. 206. CONFIDENTIALITY OF GENETIC INFORMATION.
(a) TREATMENT OF INFORMATION AS PART OF CON-
FIDENTIAL MEDICAL RECORD.—If an employer, employ-
ment agency, labor organization, or joint labor-manage-
ment committee possesses genetic information about an em-
ployee or member, such information shall be maintained on
separate forms and in separate medical files and be treated
as a confidential medical record of the employee or member.
An employer, employment agency, labor organization, or
joint labor-management committee shall be considered to be
in compliance with the maintenance of information re-
quirements of this subsection with respect to genetic infor-
mation subject to this subsection that is maintained with
and treated as a confidential medical record under section
102(d)(3)(B) of the Americans With Disabilities Act (42
U.S.C. 12112(d)(3)(B)).
(b) LIMITATION ON DISCLOSURE.—An employer, em-
ployment agency, labor organization, or joint labor-man-
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agement committee shall not disclose genetic information
concerning an employee or member except—
(1) to the employee or member of a labor organi-
zation (or family member if the family member is re-
ceiving the genetic services) at the written request of
the employee or member of such organization;
(2) to an occupational or other health researcher
if the research is conducted in compliance with the
regulations and protections provided for under part
46 of title 45, Code of Federal Regulations;
(3) in response to an order of a court, except
that—
(A) the employer, employment agency, labor
organization, or joint labor-management com-
mittee 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, em-
ployment agency, labor organization, or joint
labor-management committee shall inform the
employee or member of the court order and any
genetic information that was disclosed pursuant
to such order;
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(4) to government officials who are investigating
compliance with this title if the information is rel-
evant to the investigation;
(5) to the extent that such disclosure is made in
connection with the employee’s compliance with the
certification provisions of section 103 of the Family
and Medical Leave Act of 1993 (29 U.S.C. 2613) or
such requirements under State family and medical
leave laws; or
(6) to a Federal, State, or local public health
agency only with regard to information that is de-
scribed in section 201(4)(A)(iii) and that concerns a
contagious disease that presents an imminent hazard
of death or life-threatening illness, and that the em-
ployee whose family member or family members is or
are the subject of a disclosure under this paragraph
is notified of such disclosure.
(c) RELATIONSHIP TO HIPAA REGULATIONS.—With
respect to the regulations promulgated by the Secretary of
Health and Human Services under part C of title XI of
the Social Security Act (42 U.S.C. 1320d et seq.) and sec-
tion 264 of the Health Insurance Portability and Account-
ability Act of 1996 (42 U.S.C. 1320d–2 note), this title does
not prohibit a covered entity under such regulations from
any use or disclosure of health information that is author-
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ized for the covered entity under such regulations. The pre-
vious sentence does not affect the authority of such Secretary
to modify such regulations.
SEC. 207. REMEDIES AND ENFORCEMENT.
(a) EMPLOYEES COVERED BY TITLE VII OF THE CIVIL
RIGHTS ACT OF 1964.—
(1) IN GENERAL.—The powers, procedures, and
remedies provided in sections 705, 706, 707, 709, 710,
and 711 of the Civil Rights Act of 1964 (42 U.S.C.
2000e–4 et seq.) to the Commission, the Attorney Gen-
eral, or any person, alleging a violation of title VII
of that Act (42 U.S.C. 2000e et seq.) shall be the pow-
ers, procedures, and remedies this title provides to the
Commission, the Attorney General, or any person, re-
spectively, alleging an unlawful employment practice
in violation of this title against an employee de-
scribed in section 201(2)(A)(i), except as provided in
paragraphs (2) and (3).
(2) COSTS
AND
FEES.—The powers, remedies,
and procedures provided in subsections (b) and (c) of
section 722 of the Revised Statutes of the United
States (42 U.S.C. 1988), shall be powers, remedies,
and procedures this title provides to the Commission,
the Attorney General, or any person, alleging such a
practice.
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(3) DAMAGES.—The powers, remedies, and pro-
cedures provided in section 1977A of the Revised
Statutes of the United States (42 U.S.C. 1981a), in-
cluding 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 ex-
cluded from coverage under section 1977A(a)(1) of the
Revised Statutes of the United States).
(b) EMPLOYEES
COVERED
BY
GOVERNMENT
EM-
PLOYEE 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).
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vides to that Board, or any person, alleging an un-
lawful employment practice in violation of this title
against 
an 
employee 
described 
in 
section
201(2)(A)(iii), except as provided in paragraphs (2)
and (3).
(2) COSTS
AND
FEES.—The powers, remedies,
and procedures provided in subsections (b) and (c) of
section 722 of the Revised Statutes of the United
States (42 U.S.C. 1988), shall be powers, remedies,
and procedures this title provides to that Board, or
any person, alleging such a practice.
(3) DAMAGES.—The powers, remedies, and pro-
cedures provided in section 1977A of the Revised
Statutes of the United States (42 U.S.C. 1981a), in-
cluding 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 sec-
tion 1977A(a)(1) of the Revised Statutes of the United
States).
(4) OTHER APPLICABLE PROVISIONS.—With re-
spect to a claim alleging a practice described in para-
graph (1), title III of the Congressional Account-
ability Act of 1995 (2 U.S.C. 1381 et seq.) shall apply
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(g) DEFINITION.—In this section, the term ‘‘Commis-
sion’’ means the Equal Employment Opportunity Commis-
sion.
SEC. 208. DISPARATE IMPACT.
(a) GENERAL RULE.—Notwithstanding any other pro-
vision of this Act, ‘‘disparate impact’’, as that term is used
in section 703(k) of the Civil Rights Act of 1964 (42 U.S.C.
2000e–2(k)), on the basis of genetic information does not
establish a cause of action under this Act.
(b) COMMISSION.—On the date that is 6 years after
the date of enactment of this Act, there shall be established
a commission, to be known as the Genetic Nondiscrimina-
tion Study Commission (referred to in this section as the
‘‘Commission’’) to review the developing science of genetics
and to make recommendations to Congress regarding wheth-
er to provide a disparate impact cause of action under this
Act.
(c) MEMBERSHIP.—
(1) IN GENERAL.—The Commission shall be com-
posed of 8 members, of which—
(A) 1 member shall be appointed by the Ma-
jority Leader of the Senate;
(B) 1 member shall be appointed by the Mi-
nority Leader of the Senate;
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(C) 1 member shall be appointed by the
Chairman of the Committee on Health, Edu-
cation, 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 Mi-
nority Leader of the House of Representatives;
(G) 1 member shall be appointed by the
Chairman of the Committee on Education and
Labor of the House of Representatives; and
(H) 1 member shall be appointed by the
ranking minority member of the Committee on
Education and Labor of the House of Represent-
atives.
(2) COMPENSATION AND EXPENSES.—The mem-
bers 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
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their homes or regular places of business in the per-
formance 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 Fed-
eral department or agency such information as the
Commission considers necessary to carry out the pro-
visions of this section. Upon request of the Commis-
sion, the head of such department or agency shall fur-
nish 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 Com-
mission considers advisable to carry out the objectives
of this section, except that, to the extent possible, the
Commission shall use existing data and research.
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(5) POSTAL SERVICES.—The Commission may
use the United States mails in the same manner and
under the same conditions as other departments and
agencies of the Federal Government.
(e) REPORT.—Not later than 1 year after all of the
members are appointed to the Commission under subsection
(c)(1), the Commission shall submit to Congress a report
that summarizes the findings of the Commission and makes
such recommendations for legislation as are consistent with
this Act.
(f) AUTHORIZATION OF APPROPRIATIONS.—There are
authorized to be appropriated to the Equal Employment
Opportunity Commission such sums as may be necessary
to carry out this section.
SEC. 209. CONSTRUCTION.
(a) IN GENERAL.—Nothing in this title shall be con-
strued to—
(1) limit the rights or protections of an indi-
vidual under any other Federal or State statute that
provides equal or greater protection to an individual
than the rights or protections provided for under this
title, including the protections of an individual under
the Americans with Disabilities Act of 1990 (42
U.S.C. 12101 et seq.) (including coverage afforded to
individuals under section 102 of such Act (42 U.S.C.
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12112)), or under the Rehabilitation Act of 1973 (29
U.S.C. 701 et seq.);
(2)(A) limit the rights or protections of an indi-
vidual 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) provide for enforcement of, or penalties for
violation of, any requirement or prohibition applica-
ble to any employer, employment agency, labor orga-
nization, or joint labor-management committee sub-
ject to enforcement for a violation under—
(i) the amendments made by title I of this
Act;
(ii)(I) subsection (a) of section 701 of the
Employee Retirement Income Security Act of
1974 as such section applies with respect to ge-
netic 
information 
pursuant 
to 
subsection
(b)(1)(B) of such section;
(II) section 702(a)(1)(F) of such Act; or
(III) section 702(b)(1) of such Act as such
section applies with respect to genetic informa-
tion as a health status-related factor;
(iii)(I) subsection (a) of section 2701 of the
Public Health Service Act as such section applies
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with respect to genetic information pursuant to
subsection (b)(1)(B) of such section;
(II) section 2702(a)(1)(F) of such Act; or
(III) section 2702(b)(1) of such Act as such
section applies with respect to genetic informa-
tion as a health status-related factor; or
(iv)(I) subsection (a) of section 9801 of the
Internal Revenue Code of 1986 as such section
applies with respect to genetic information pur-
suant to subsection (b)(1)(B) of such section;
(II) section 9802(a)(1)(F) of such Act; or
(III) section 9802(b)(1) of such Act as such
section applies with respect to genetic informa-
tion as a health status-related factor;
(3) apply to the Armed Forces Repository of
Specimen Samples for the Identification of Remains;
(4) limit or expand the protections, rights, or ob-
ligations of employees or employers under applicable
workers’ compensation laws;
(5) limit the authority of a Federal department
or agency to conduct or sponsor occupational or other
health research that is conducted in compliance with
the regulations contained in part 46 of title 45, Code
of Federal Regulations (or any corresponding or simi-
lar regulation or rule);
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tion with a group health plan, this title does not prohibit
any activity of such plan or issuer that is authorized for
the plan or issuer under any provision of law referred to
in clauses (i) through (iv) of subsection (a)(2)(B).
SEC. 210. MEDICAL INFORMATION THAT IS NOT GENETIC
INFORMATION.
An employer, employment agency, labor organization,
or joint labor-management committee shall not be consid-
ered to be in violation of this title based on the use, acquisi-
tion, or disclosure of medical information that is not genetic
information about a manifested disease, disorder, or patho-
logical condition of an employee or member, including a
manifested disease, disorder, or pathological condition that
has or may have a genetic basis.
SEC. 211. REGULATIONS.
Not later than 1 year after the date of enactment of
this title, the Commission shall issue final regulations to
carry out this title.
SEC. 212. AUTHORIZATION OF APPROPRIATIONS.
There are authorized to be appropriated such sums as
may be necessary to carry out this title (except for section
208).
SEC. 213. EFFECTIVE DATE.
This title takes effect on the date that is 18 months
after the date of enactment of this Act.
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TITLE III—MISCELLANEOUS
PROVISIONS
SEC. 301. SEVERABILITY.
If any provision of this Act, an amendment made by
this Act, or the application of such provision or amendment
to any person or circumstance is held to be unconstitu-
tional, the remainder of this Act, the amendments made by
this Act, and the application of such provisions to any per-
son or circumstance shall not be affected thereby.
SEC. 302. CHILD LABOR PROTECTIONS.
(a) IN GENERAL.—Section 16(e) of the Fair Labor
Standards Act of 1938 (29 U.S.C. 216(e)) is amended to
read as follows:
‘‘(e)(1)(A) Any person who violates the provisions of
sections 12 or 13(c), relating to child labor, or any regula-
tion issued pursuant to such sections, shall be subject to a
civil penalty not to exceed—
‘‘(i) $11,000 for each employee who
was the subject of such a violation; or
‘‘(ii) $50,000 with regard to each such
violation that causes the death or serious
injury of any employee under the age of 18
years, which penalty may be doubled where
the violation is a repeated or willful viola-
tion.
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‘‘(B) For purposes of subparagraph (A), the term ‘seri-
ous injury’ means—
‘‘(i) permanent loss or substantial impairment of
one of the senses (sight, hearing, taste, smell, tactile
sensation);
‘‘(ii) permanent loss or substantial impairment
of the function of a bodily member, organ, or mental
faculty, including the loss of all or part of an arm,
leg, foot, hand or other body part; or
‘‘(iii) permanent paralysis or substantial im-
pairment that causes loss of movement or mobility of
an arm, leg, foot, hand or other body part.
‘‘(2) Any person who repeatedly or willfully violates
section 6 or 7, relating to wages, shall be subject to a civil
penalty not to exceed $1,100 for each such violation.
‘‘(3) In determining the amount of any penalty under
this subsection, the appropriateness of such penalty to the
size of the business of the person charged and the gravity
of the violation shall be considered. The amount of any pen-
alty under this subsection, when finally determined, may
be—
‘‘(A) deducted from any sums owing by the
United States to the person charged;
‘‘(B) recovered in a civil action brought by the
Secretary in any court of competent jurisdiction, in
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which litigation the Secretary shall be represented by
the Solicitor of Labor; or
‘‘(C) ordered by the court, in an action brought
for a violation of section 15(a)(4) or a repeated or
willful violation of section 15(a)(2), to be paid to the
Secretary.
‘‘(4) Any administrative determination by the Sec-
retary of the amount of any penalty under this subsection
shall be final, unless within 15 days after receipt of notice
thereof by certified mail the person charged with the viola-
tion takes exception to the determination that the violations
for which the penalty is imposed occurred, in which event
final determination of the penalty shall be made in an ad-
ministrative proceeding after opportunity for hearing in
accordance with section 554 of title 5, United States Code,
and regulations to be promulgated by the Secretary.
‘‘(5) Except for civil penalties collected for violations
of section 12, sums collected as penalties pursuant to this
section shall be applied toward reimbursement of the costs
of determining the violations and assessing and collecting
such penalties, in accordance with the provision of section
2 of the Act entitled ‘An Act to authorize the Department
of Labor to make special statistical studies upon payment
of the cost thereof and for other purposes’ (29 U.S.C. 9a).
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Civil penalties collected for violations of section 12 shall
be deposited in the general fund of the Treasury.’’.
(b) EFFECTIVE DATE.—The amendments made by this
section shall take effect on the date of the enactment of this
Act.
Attest:
Secretary.