★

In the Senate of the United States,

April 24, 2008.

Resolved, That the bill from the House of Representatives (H.R. 493) entitled ‘‘An Act to prohibit discrimination

on the basis of genetic information with respect to health insurance and employment.’’, do pass with the following

AMENDMENT:

Strike out all after the enacting clause and insert:

1 SECTION 1. SHORT TITLE; TABLE OF CONTENTS.

2 (a) SHORT TITLE.—This Act may be cited as the ‘‘Ge3 netic Information Nondiscrimination Act of 2008’’.

4 (b) TABLE OF CONTENTS.—The table of contents of this

5 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.

1 SEC. 2. FINDINGS.

2 Congress makes the following findings:

3 (1) Deciphering the sequence of the human ge4 nome and other advances in genetics open major new

5 opportunities for medical progress. New knowledge

6 about the genetic basis of illness will allow for earlier

7 detection of illnesses, often before symptoms have

8 begun. Genetic testing can allow individuals to take

9 steps to reduce the likelihood that they will contract

10 a particular disorder. New knowledge about genetics

11 may allow for the development of better therapies that

12 are more effective against disease or have fewer side

13 effects than current treatments. These advances give

14 rise to the potential misuse of genetic information to

15 discriminate in health insurance and employment.
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1 (2) The early science of genetics became the basis

2 of State laws that provided for the sterilization of

3 persons having presumed genetic ‘‘defects’’ such as

4 mental retardation, mental disease, epilepsy, blind5 ness, and hearing loss, among other conditions. The

6 first sterilization law was enacted in the State of In7 diana in 1907. By 1981, a majority of States adopted

8 sterilization laws to ‘‘correct’’ apparent genetic traits

9 or tendencies. Many of these State laws have since

10 been repealed, and many have been modified to in11 clude essential constitutional requirements of due

12 process and equal protection. However, the current ex13 plosion in the science of genetics, and the history of

14 sterilization laws by the States based on early genetic

15 science, compels Congressional action in this area.

16 (3) Although genes are facially neutral markers,

17 many genetic conditions and disorders are associated

18 with particular racial and ethnic groups and gender.

19 Because some genetic traits are most prevalent in

20 particular groups, members of a particular group

21 may be stigmatized or discriminated against as a re22 sult of that genetic information. This form of dis23 crimination was evident in the 1970s, which saw the

24 advent of programs to screen and identify carriers of

25 sickle cell anemia, a disease which afflicts African-
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1 Americans. Once again, State legislatures began to

2 enact discriminatory laws in the area, and in the

3 early 1970s began mandating genetic screening of all

4 African Americans for sickle cell anemia, leading to

5 discrimination and unnecessary fear. To alleviate

6 some of this stigma, Congress in 1972 passed the Na7 tional Sickle Cell Anemia Control Act, which with8 holds Federal funding from States unless sickle cell

9 testing is voluntary.

10 (4) Congress has been informed of examples of

11 genetic discrimination in the workplace. These in12 clude the use of pre-employment genetic screening at

13 Lawrence Berkeley Laboratory, which led to a court

14 decision in favor of the employees in that case Nor15 man-Bloodsaw v. Lawrence Berkeley Laboratory (135

16 F.3d 1260, 1269 (9th Cir. 1998)). Congress clearly

17 has a compelling public interest in relieving the fear

18 of discrimination and in prohibiting its actual prac19 tice in employment and health insurance.

20 (5) Federal law addressing genetic discrimina21 tion in health insurance and employment is incom22 plete in both the scope and depth of its protections.

23 Moreover, while many States have enacted some type

24 of genetic non-discrimination law, these laws vary

25 widely with respect to their approach, application,
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1 and level of protection. Congress has collected substan2 tial evidence that the American public and the med3 ical community find the existing patchwork of State

4 and Federal laws to be confusing and inadequate to

5 protect them from discrimination. Therefore Federal

6 legislation establishing a national and uniform basic

7 standard is necessary to fully protect the public from

8 discrimination and allay their concerns about the po9 tential for discrimination, thereby allowing individ10 uals to take advantage of genetic testing, technologies,

11 research, and new therapies.

12 TITLE I—GENETIC NON13 DISCRIMINATION IN HEALTH

14 INSURANCE

15 SEC. 101. AMENDMENTS TO EMPLOYEE RETIREMENT IN16 COME SECURITY ACT OF 1974.

17 (a) NO DISCRIMINATION IN GROUP PREMIUMS BASED

18 ON GENETIC INFORMATION.—Section 702(b) of the Em19 ployee Retirement Income Security Act of 1974 (29 U.S.C.

20 1182(b)) is amended—

21 (1) in paragraph (2)(A), by inserting before the

22 semicolon the following: ‘‘except as provided in para23 graph (3)’’; and

24 (2) by adding at the end the following:
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1 ‘‘(3) NO GROUP-BASED DISCRIMINATION ON

2 BASIS OF GENETIC INFORMATION.—

3 ‘‘(A) IN GENERAL.—For purposes of this

4 section, a group health plan, and a health insur5 ance issuer offering group health insurance cov6 erage in connection with a group health plan,

7 may not adjust premium or contribution

8 amounts for the group covered under such plan

9 on the basis of genetic information.

10 ‘‘(B) RULE OF CONSTRUCTION.—Nothing in

11 subparagraph (A) or in paragraphs (1) and (2)

12 of subsection (d) shall be construed to limit the

13 ability of a health insurance issuer offering

14 health insurance coverage in connection with a

15 group health plan to increase the premium for

16 an employer based on the manifestation of a dis17 ease or disorder of an individual who is enrolled

18 in the plan. In such case, the manifestation of a

19 disease or disorder in one individual cannot also

20 be used as genetic information about other group

21 members and to further increase the premium for

22 the employer.’’.

23 (b) LIMITATIONS ON GENETIC TESTING; PROHIBITION

24 ON COLLECTION OF GENETIC INFORMATION; APPLICATION

25 TO ALL PLANS.—Section 702 of the Employee Retirement
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1 Income Security Act of 1974 (29 U.S.C. 1182) is amended

2 by adding at the end the following:

3 ‘‘(c) GENETIC TESTING.—

4 ‘‘(1) LIMITATION ON REQUESTING OR REQUIRING

5 GENETIC TESTING.—A group health plan, and a

6 health insurance issuer offering health insurance cov7 erage in connection with a group health plan, shall

8 not request or require an individual or a family

9 member of such individual to undergo a genetic test.

10 ‘‘(2) RULE OF CONSTRUCTION.—Paragraph (1)

11 shall not be construed to limit the authority of a

12 health care professional who is providing health care

13 services to an individual to request that such indi14 vidual undergo a genetic test.

15 ‘‘(3) RULE OF CONSTRUCTION REGARDING PAY16 MENT.—

17 ‘‘(A) IN GENERAL.—Nothing in paragraph

18 (1) shall be construed to preclude a group health

19 plan, or a health insurance issuer offering health

20 insurance coverage in connection with a group

21 health plan, from obtaining and using the results

22 of a genetic test in making a determination re23 garding payment (as such term is defined for the

24 purposes of applying the regulations promul25 gated by the Secretary of Health and Human
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1 Services under part C of title XI of the Social

2 Security Act and section 264 of the Health In3 surance Portability and Accountability Act of

4 1996, as may be revised from time to time) con5 sistent with subsection (a).

6 ‘‘(B) LIMITATION.—For purposes of sub7 paragraph (A), a group health plan, or a health

8 insurance issuer offering health insurance cov9 erage in connection with a group health plan,

10 may request only the minimum amount of infor11 mation necessary to accomplish the intended

12 purpose.

13 ‘‘(4) RESEARCH EXCEPTION.—Notwithstanding

14 paragraph (1), a group health plan, or a health in15 surance issuer offering health insurance coverage in

16 connection with a group health plan, may request,

17 but not require, that a participant or beneficiary un18 dergo a genetic test if each of the following conditions

19 is met:

20 ‘‘(A) The request is made, in writing, pur21 suant to research that complies with part 46 of

22 title 45, Code of Federal Regulations, or equiva23 lent Federal regulations, and any applicable

24 State or local law or regulations for the protec25 tion of human subjects in research.
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1 ‘‘(B) The plan or issuer clearly indicates to

2 each participant or beneficiary, or in the case of

3 a minor child, to the legal guardian of such ben4 eficiary, to whom the request is made that—

5 ‘‘(i) compliance with the request is vol6 untary; and

7 ‘‘(ii) non-compliance will have no ef8 fect on enrollment status or premium or

9 contribution amounts.

10 ‘‘(C) No genetic information collected or ac11 quired under this paragraph shall be used for

12 underwriting purposes.

13 ‘‘(D) The plan or issuer notifies the Sec14 retary in writing that the plan or issuer is con15 ducting activities pursuant to the exception pro16 vided for under this paragraph, including a de17 scription of the activities conducted.

18 ‘‘(E) The plan or issuer complies with such

19 other conditions as the Secretary may by regula20 tion require for activities conducted under this

21 paragraph.

22 ‘‘(d) PROHIBITION ON COLLECTION OF GENETIC IN23 FORMATION.—

24 ‘‘(1) IN GENERAL.—A group health plan, and a

25 health insurance issuer offering health insurance cov-
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1 erage in connection with a group health plan, shall

2 not request, require, or purchase genetic information

3 for underwriting purposes (as defined in section 733).

4 ‘‘(2) PROHIBITION ON COLLECTION OF GENETIC

5 INFORMATION PRIOR TO ENROLLMENT.—A group

6 health plan, and a health insurance issuer offering

7 health insurance coverage in connection with a group

8 health plan, shall not request, require, or purchase ge9 netic information with respect to any individual

10 prior to such individual’s enrollment under the plan

11 or coverage in connection with such enrollment.

12 ‘‘(3) INCIDENTAL COLLECTION.—If a group

13 health plan, or a health insurance issuer offering

14 health insurance coverage in connection with a group

15 health plan, obtains genetic information incidental to

16 the requesting, requiring, or purchasing of other in17 formation concerning any individual, such request,

18 requirement, or purchase shall not be considered a

19 violation of paragraph (2) if such request, require20 ment, or purchase is not in violation of paragraph

21 (1).

22 ‘‘(e) APPLICATION TO ALL PLANS.—The provisions of

23 subsections (a)(1)(F), (b)(3), (c), and (d), and subsection

24 (b)(1) and section 701 with respect to genetic information,
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1 shall apply to group health plans and health insurance

2 issuers without regard to section 732(a).’’.

3 (c) APPLICATION TO GENETIC INFORMATION OF A

4 FETUS OR EMBRYO.—Such section is further amended by

5 adding at the end the following:

6 ‘‘(f) GENETIC INFORMATION OF A FETUS OR EM7 BRYO.—Any reference in this part to genetic information

8 concerning an individual or family member of an indi9 vidual shall—

10 ‘‘(1) with respect to such an individual or family

11 member of an individual who is a pregnant woman,

12 include genetic information of any fetus carried by

13 such pregnant woman; and

14 ‘‘(2) with respect to an individual or family

15 member utilizing an assisted reproductive technology,

16 include genetic information of any embryo legally

17 held by the individual or family member.’’.

18 (d) DEFINITIONS.—Section 733(d) of the Employee

19 Retirement Income Security Act of 1974 (29 U.S.C.

20 1191b(d)) is amended by adding at the end the following:

21 ‘‘(5) FAMILY MEMBER.—The term ‘family mem22 ber’ means, with respect to an individual—

23 ‘‘(A) a dependent (as such term is used for

24 purposes of section 701(f)(2)) of such individual,

25 and
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1 ‘‘(B) any other individual who is a first-de2 gree, second-degree, third-degree, or fourth-degree

3 relative of such individual or of an individual

4 described in subparagraph (A).

5 ‘‘(6) GENETIC INFORMATION.—

6 ‘‘(A) IN GENERAL.—The term ‘genetic infor7 mation’ means, with respect to any individual,

8 information about—

9 ‘‘(i) such individual’s genetic tests,

10 ‘‘(ii) the genetic tests of family mem11 bers of such individual, and

12 ‘‘(iii) the manifestation of a disease or

13 disorder in family members of such indi14 vidual.

15 ‘‘(B) INCLUSION OF GENETIC SERVICES AND

16 PARTICIPATION IN GENETIC RESEARCH.—Such

17 term includes, with respect to any individual,

18 any request for, or receipt of, genetic services, or

19 participation in clinical research which includes

20 genetic services, by such individual or any fam21 ily member of such individual.

22 ‘‘(C) EXCLUSIONS.—The term ‘genetic infor23 mation’ shall not include information about the

24 sex or age of any individual.

25 ‘‘(7) GENETIC TEST.—
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1 ‘‘(A) IN GENERAL.—The term ‘genetic test’

2 means an analysis of human DNA, RNA, chro3 mosomes, proteins, or metabolites, that detects

4 genotypes, mutations, or chromosomal changes.

5 ‘‘(B) EXCEPTIONS.—The term ‘genetic test’

6 does not mean—

7 ‘‘(i) an analysis of proteins or metabo8 lites that does not detect genotypes,

9 mutations, or chromosomal changes; or

10 ‘‘(ii) an analysis of proteins or me11 tabolites that is directly related to a mani12 fested disease, disorder, or pathological con13 dition that could reasonably be detected by

14 a health care professional with appropriate

15 training and expertise in the field of medi16 cine involved.

17 ‘‘(8) GENETIC SERVICES.—The term ‘genetic

18 services’ means—

19 ‘‘(A) a genetic test;

20 ‘‘(B) genetic counseling (including obtain21 ing, interpreting, or assessing genetic informa22 tion); or

23 ‘‘(C) genetic education.

24 ‘‘(9) UNDERWRITING PURPOSES.—The term ‘un25 derwriting purposes’ means, with respect to any
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1 group health plan, or health insurance coverage of2 fered in connection with a group health plan—

3 ‘‘(A) rules for, or determination of, eligi4 bility (including enrollment and continued eligi5 bility) for benefits under the plan or coverage;

6 ‘‘(B) the computation of premium or con7 tribution amounts under the plan or coverage;

8 ‘‘(C) the application of any pre-existing

9 condition exclusion under the plan or coverage;

10 and

11 ‘‘(D) other activities related to the creation,

12 renewal, or replacement of a contract of health

13 insurance or health benefits.’’.

14 (e) ERISA ENFORCEMENT.—Section 502 of the Em15 ployee Retirement Income Security Act of 1974 (29 U.S.C.

16 1132) is amended—

17 (1) in subsection (a)(6), by striking ‘‘(7), or (8)’’

18 and inserting ‘‘(7), (8), or (9)’’;

19 (2) in subsection (b)(3), by striking ‘‘The Sec20 retary’’ and inserting ‘‘Except as provided in sub21 sections (c)(9) and (a)(6) (with respect to collecting

22 civil penalties under subsection (c)(9)), the Sec23 retary’’; and
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1 (3) in subsection (c), by redesignating paragraph

2 (9) as paragraph (10), and by inserting after para3 graph (8) the following new paragraph:

4 ‘‘(9) SECRETARIAL ENFORCEMENT AUTHORITY

5 RELATING TO USE OF GENETIC INFORMATION.—

6 ‘‘(A) GENERAL RULE.—The Secretary may

7 impose a penalty against any plan sponsor of a

8 group health plan, or any health insurance

9 issuer offering health insurance coverage in con10 nection with the plan, for any failure by such

11 sponsor or issuer to meet the requirements of

12 subsection (a)(1)(F), (b)(3), (c), or (d) of section

13 702 or section 701 or 702(b)(1) with respect to

14 genetic information, in connection with the plan.

15 ‘‘(B) AMOUNT.—

16 ‘‘(i) IN GENERAL.—The amount of the

17 penalty imposed by subparagraph (A) shall

18 be $100 for each day in the noncompliance

19 period with respect to each participant or

20 beneficiary to whom such failure relates.

21 ‘‘(ii) NONCOMPLIANCE PERIOD.—For

22 purposes of this paragraph, the term ‘non23 compliance period’ means, with respect to

24 any failure, the period—
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1 ‘‘(I) beginning on the date such

2 failure first occurs; and

3 ‘‘(II) ending on the date the fail4 ure is corrected.

5 ‘‘(C) MINIMUM PENALTIES WHERE FAILURE

6 DISCOVERED.—Notwithstanding clauses (i) and

7 (ii) of subparagraph (D):

8 ‘‘(i) IN GENERAL.—In the case of 1 or

9 more failures with respect to a participant

10 or beneficiary—

11 ‘‘(I) which are not corrected before

12 the date on which the plan receives a

13 notice from the Secretary of such viola14 tion; and

15 ‘‘(II) which occurred or continued

16 during the period involved;

17 the amount of penalty imposed by subpara18 graph (A) by reason of such failures with

19 respect to such participant or beneficiary

20 shall not be less than $2,500.

21 ‘‘(ii) HIGHER MINIMUM PENALTY

22 WHERE VIOLATIONS ARE MORE THAN DE

23 MINIMIS.—To the extent violations for

24 which any person is liable under this para25 graph for any year are more than de mini-
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1 mis, clause (i) shall be applied by sub2 stituting ‘$15,000’ for ‘$2,500’ with respect

3 to such person.

4 ‘‘(D) LIMITATIONS.—

5 ‘‘(i) PENALTY NOT TO APPLY WHERE

6 FAILURE NOT DISCOVERED EXERCISING

7 REASONABLE DILIGENCE.—No penalty shall

8 be imposed by subparagraph (A) on any

9 failure during any period for which it is es10 tablished to the satisfaction of the Secretary

11 that the person otherwise liable for such

12 penalty did not know, and exercising rea13 sonable diligence would not have known,

14 that such failure existed.

15 ‘‘(ii) PENALTY NOT TO APPLY TO FAIL16 URES CORRECTED WITHIN CERTAIN PERI17 ODS.—No penalty shall be imposed by sub18 paragraph (A) on any failure if—

19 ‘‘(I) such failure was due to rea20 sonable cause and not to willful ne21 glect; and

22 ‘‘(II) such failure is corrected dur23 ing the 30-day period beginning on the

24 first date the person otherwise liable

25 for such penalty knew, or exercising
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1 reasonable diligence would have known,

2 that such failure existed.

3 ‘‘(iii) OVERALL LIMITATION FOR UNIN4 TENTIONAL FAILURES.—In the case of fail5 ures which are due to reasonable cause and

6 not to willful neglect, the penalty imposed

7 by subparagraph (A) for failures shall not

8 exceed the amount equal to the lesser of—

9 ‘‘(I) 10 percent of the aggregate

10 amount paid or incurred by the plan

11 sponsor (or predecessor plan sponsor)

12 during the preceding taxable year for

13 group health plans; or

14 ‘‘(II) $500,000.

15 ‘‘(E) WAIVER BY SECRETARY.—In the case

16 of a failure which is due to reasonable cause and

17 not to willful neglect, the Secretary may waive

18 part or all of the penalty imposed by subpara19 graph (A) to the extent that the payment of such

20 penalty would be excessive relative to the failure

21 involved.

22 ‘‘(F) DEFINITIONS.—Terms used in this

23 paragraph which are defined in section 733 shall

24 have the meanings provided such terms in such

25 section.’’.
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1 (f) REGULATIONS AND EFFECTIVE DATE.—

2 (1) REGULATIONS.—The Secretary of Labor shall

3 issue final regulations not later than 12 months after

4 the date of enactment of this Act to carry out the

5 amendments made by this section.

6 (2) EFFECTIVE DATE.—The amendments made

7 by this section shall apply with respect to group

8 health plans for plan years beginning after the date

9 that is 1 year after the date of enactment of this Act.

10 SEC. 102. AMENDMENTS TO THE PUBLIC HEALTH SERVICE

11 ACT.

12 (a) AMENDMENTS RELATING TO THE GROUP MAR13 KET.—

14 (1) NO DISCRIMINATION IN GROUP PREMIUMS

15 BASED ON GENETIC INFORMATION.—Section 2702(b)

16 of the Public Health Service Act (42 U.S.C. 300gg–

17 1(b)) is amended—

18 (A) in paragraph (2)(A), by inserting before

19 the semicolon the following: ‘‘except as provided

20 in paragraph (3)’’; and

21 (B) by adding at the end the following:

22 ‘‘(3) NO GROUP-BASED DISCRIMINATION ON

23 BASIS OF GENETIC INFORMATION.—

24 ‘‘(A) IN GENERAL.—For purposes of this

25 section, a group health plan, and health insur-
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1 ance issuer offering group health insurance cov2 erage in connection with a group health plan,

3 may not adjust premium or contribution

4 amounts for the group covered under such plan

5 on the basis of genetic information.

6 ‘‘(B) RULE OF CONSTRUCTION.—Nothing in

7 subparagraph (A) or in paragraphs (1) and (2)

8 of subsection (d) shall be construed to limit the

9 ability of a health insurance issuer offering

10 health insurance coverage in connection with a

11 group health plan to increase the premium for

12 an employer based on the manifestation of a dis13 ease or disorder of an individual who is enrolled

14 in the plan. In such case, the manifestation of a

15 disease or disorder in one individual cannot also

16 be used as genetic information about other group

17 members and to further increase the premium for

18 the employer.’’.

19 (2) LIMITATIONS ON GENETIC TESTING; PROHIBI20 TION ON COLLECTION OF GENETIC INFORMATION; AP21 PLICATION TO ALL PLANS.—Section 2702 of the Pub22 lic Health Service Act (42 U.S.C. 300gg–1) is amend23 ed by adding at the end the following:

24 ‘‘(c) GENETIC TESTING.—
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1 ‘‘(1) LIMITATION ON REQUESTING OR REQUIRING

2 GENETIC TESTING.—A group health plan, and a

3 health insurance issuer offering health insurance cov4 erage in connection with a group health plan, shall

5 not request or require an individual or a family

6 member of such individual to undergo a genetic test.

7 ‘‘(2) RULE OF CONSTRUCTION.—Paragraph (1)

8 shall not be construed to limit the authority of a

9 health care professional who is providing health care

10 services to an individual to request that such indi11 vidual undergo a genetic test.

12 ‘‘(3) RULE OF CONSTRUCTION REGARDING PAY13 MENT.—

14 ‘‘(A) IN GENERAL.—Nothing in paragraph

15 (1) shall be construed to preclude a group health

16 plan, or a health insurance issuer offering health

17 insurance coverage in connection with a group

18 health plan, from obtaining and using the results

19 of a genetic test in making a determination re20 garding payment (as such term is defined for the

21 purposes of applying the regulations promul22 gated by the Secretary under part C of title XI

23 of the Social Security Act and section 264 of the

24 Health Insurance Portability and Accountability
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1 Act of 1996, as may be revised from time to

2 time) consistent with subsection (a).

3 ‘‘(B) LIMITATION.—For purposes of sub4 paragraph (A), a group health plan, or a health

5 insurance issuer offering health insurance cov6 erage in connection with a group health plan,

7 may request only the minimum amount of infor8 mation necessary to accomplish the intended

9 purpose.

10 ‘‘(4) RESEARCH EXCEPTION.—Notwithstanding

11 paragraph (1), a group health plan, or a health in12 surance issuer offering health insurance coverage in

13 connection with a group health plan, may request,

14 but not require, that a participant or beneficiary un15 dergo a genetic test if each of the following conditions

16 is met:

17 ‘‘(A) The request is made pursuant to re18 search that complies with part 46 of title 45,

19 Code of Federal Regulations, or equivalent Fed20 eral regulations, and any applicable State or

21 local law or regulations for the protection of

22 human subjects in research.

23 ‘‘(B) The plan or issuer clearly indicates to

24 each participant or beneficiary, or in the case of
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1 a minor child, to the legal guardian of such ben2 eficiary, to whom the request is made that—

3 ‘‘(i) compliance with the request is vol4 untary; and

5 ‘‘(ii) non-compliance will have no ef6 fect on enrollment status or premium or

7 contribution amounts.

8 ‘‘(C) No genetic information collected or ac9 quired under this paragraph shall be used for

10 underwriting purposes.

11 ‘‘(D) The plan or issuer notifies the Sec12 retary in writing that the plan or issuer is con13 ducting activities pursuant to the exception pro14 vided for under this paragraph, including a de15 scription of the activities conducted.

16 ‘‘(E) The plan or issuer complies with such

17 other conditions as the Secretary may by regula18 tion require for activities conducted under this

19 paragraph.

20 ‘‘(d) PROHIBITION ON COLLECTION OF GENETIC IN21 FORMATION.—

22 ‘‘(1) IN GENERAL.—A group health plan, and a

23 health insurance issuer offering health insurance cov24 erage in connection with a group health plan, shall

25 not request, require, or purchase genetic information
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1 for underwriting purposes (as defined in section

2 2791).

3 ‘‘(2) PROHIBITION ON COLLECTION OF GENETIC

4 INFORMATION PRIOR TO ENROLLMENT.—A group

5 health plan, and a health insurance issuer offering

6 health insurance coverage in connection with a group

7 health plan, shall not request, require, or purchase ge8 netic information with respect to any individual

9 prior to such individual’s enrollment under the plan

10 or coverage in connection with such enrollment.

11 ‘‘(3) INCIDENTAL COLLECTION.—If a group

12 health plan, or a health insurance issuer offering

13 health insurance coverage in connection with a group

14 health plan, obtains genetic information incidental to

15 the requesting, requiring, or purchasing of other in16 formation concerning any individual, such request,

17 requirement, or purchase shall not be considered a

18 violation of paragraph (2) if such request, require19 ment, or purchase is not in violation of paragraph

20 (1).

21 ‘‘(e) APPLICATION TO ALL PLANS.—The provisions of

22 subsections (a)(1)(F), (b)(3), (c) , and (d) and subsection

23 (b)(1) and section 2701 with respect to genetic information,

24 shall apply to group health plans and health insurance

25 issuers without regard to section 2721(a).’’.
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1 (3) APPLICATION TO GENETIC INFORMATION OF A

2 FETUS OR EMBRYO.—Such section is further amended

3 by adding at the end the following:

4 ‘‘(f) GENETIC INFORMATION OF A FETUS OR EM5 BRYO.—Any reference in this part to genetic information

6 concerning an individual or family member of an indi7 vidual shall—

8 ‘‘(1) with respect to such an individual or family

9 member of an individual who is a pregnant woman,

10 include genetic information of any fetus carried by

11 such pregnant woman; and

12 ‘‘(2) with respect to an individual or family

13 member utilizing an assisted reproductive technology,

14 include genetic information of any embryo legally

15 held by the individual or family member.’’.

16 (4) DEFINITIONS.—Section 2791(d) of the Public

17 Health Service Act (42 U.S.C. 300gg–91(d)) is

18 amended by adding at the end the following:

19 ‘‘(15) FAMILY MEMBER.—The term ‘family mem20 ber’ means, with respect to any individual—

21 ‘‘(A) a dependent (as such term is used for

22 purposes of section 2701(f)(2)) of such indi23 vidual; and

24 ‘‘(B) any other individual who is a first-de25 gree, second-degree, third-degree, or fourth-degree
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1 relative of such individual or of an individual

2 described in subparagraph (A).

3 ‘‘(16) GENETIC INFORMATION.—

4 ‘‘(A) IN GENERAL.—The term ‘genetic infor5 mation’ means, with respect to any individual,

6 information about—

7 ‘‘(i) such individual’s genetic tests,

8 ‘‘(ii) the genetic tests of family mem9 bers of such individual, and

10 ‘‘(iii) the manifestation of a disease or

11 disorder in family members of such indi12 vidual.

13 ‘‘(B) INCLUSION OF GENETIC SERVICES AND

14 PARTICIPATION IN GENETIC RESEARCH.—Such

15 term includes, with respect to any individual,

16 any request for, or receipt of, genetic services, or

17 participation in clinical research which includes

18 genetic services, by such individual or any fam19 ily member of such individual.

20 ‘‘(C) EXCLUSIONS.—The term ‘genetic infor21 mation’ shall not include information about the

22 sex or age of any individual.

23 ‘‘(17) GENETIC TEST.—

24 ‘‘(A) IN GENERAL.—The term ‘genetic test’

25 means an analysis of human DNA, RNA, chro-
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1 mosomes, proteins, or metabolites, that detects

2 genotypes, mutations, or chromosomal changes.

3 ‘‘(B) EXCEPTIONS.—The term ‘genetic test’

4 does not mean—

5 ‘‘(i) an analysis of proteins or metabo6 lites that does not detect genotypes,

7 mutations, or chromosomal changes; or

8 ‘‘(ii) an analysis of proteins or me9 tabolites that is directly related to a mani10 fested disease, disorder, or pathological con11 dition that could reasonably be detected by

12 a health care professional with appropriate

13 training and expertise in the field of medi14 cine involved.

15 ‘‘(18) GENETIC SERVICES.—The term ‘genetic

16 services’ means—

17 ‘‘(A) a genetic test;

18 ‘‘(B) genetic counseling (including obtain19 ing, interpreting, or assessing genetic informa20 tion); or

21 ‘‘(C) genetic education.

22 ‘‘(19) UNDERWRITING PURPOSES.—The term

23 ‘underwriting purposes’ means, with respect to any

24 group health plan, or health insurance coverage of25 fered in connection with a group health plan—
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1 ‘‘(A) rules for, or determination of, eligi2 bility (including enrollment and continued eligi3 bility) for benefits under the plan or coverage;

4 ‘‘(B) the computation of premium or con5 tribution amounts under the plan or coverage;

6 ‘‘(C) the application of any pre-existing

7 condition exclusion under the plan or coverage;

8 and

9 ‘‘(D) other activities related to the creation,

10 renewal, or replacement of a contract of health

11 insurance or health benefits.’’.

12 (5) REMEDIES AND ENFORCEMENT.—Section

13 2722(b) of the Public Health Service Act (42 U.S.C.

14 300gg–22(b)) is amended by adding at the end the fol15 lowing:

16 ‘‘(3) ENFORCEMENT AUTHORITY RELATING TO

17 GENETIC DISCRIMINATION.—

18 ‘‘(A) GENERAL RULE.—In the cases de19 scribed in paragraph (1), notwithstanding the

20 provisions of paragraph (2)(C), the succeeding

21 subparagraphs of this paragraph shall apply

22 with respect to an action under this subsection

23 by the Secretary with respect to any failure of a

24 health insurance issuer in connection with a

25 group health plan, to meet the requirements of
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1 subsection (a)(1)(F), (b)(3), (c), or (d) of section

2 2702 or section 2701 or 2702(b)(1) with respect

3 to genetic information in connection with the

4 plan.

5 ‘‘(B) AMOUNT.—

6 ‘‘(i) IN GENERAL.—The amount of the

7 penalty imposed under this paragraph shall

8 be $100 for each day in the noncompliance

9 period with respect to each participant or

10 beneficiary to whom such failure relates.

11 ‘‘(ii) NONCOMPLIANCE PERIOD.—For

12 purposes of this paragraph, the term ‘non13 compliance period’ means, with respect to

14 any failure, the period—

15 ‘‘(I) beginning on the date such

16 failure first occurs; and

17 ‘‘(II) ending on the date the fail18 ure is corrected.

19 ‘‘(C) MINIMUM PENALTIES WHERE FAILURE

20 DISCOVERED.—Notwithstanding clauses (i) and

21 (ii) of subparagraph (D):

22 ‘‘(i) IN GENERAL.—In the case of 1 or

23 more failures with respect to an

24 individual—
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HR 493 EAS1S

1 ‘‘(I) which are not corrected before

2 the date on which the plan receives a

3 notice from the Secretary of such viola4 tion; and

5 ‘‘(II) which occurred or continued

6 during the period involved;

7 the amount of penalty imposed by subpara8 graph (A) by reason of such failures with

9 respect to such individual shall not be less

10 than $2,500.

11 ‘‘(ii) HIGHER MINIMUM PENALTY

12 WHERE VIOLATIONS ARE MORE THAN DE

13 MINIMIS.—To the extent violations for

14 which any person is liable under this para15 graph for any year are more than de mini16 mis, clause (i) shall be applied by sub17 stituting ‘$15,000’ for ‘$2,500’ with respect

18 to such person.

19 ‘‘(D) LIMITATIONS.—

20 ‘‘(i) PENALTY NOT TO APPLY WHERE

21 FAILURE NOT DISCOVERED EXERCISING

22 REASONABLE DILIGENCE.—No penalty shall

23 be imposed by subparagraph (A) on any

24 failure during any period for which it is es25 tablished to the satisfaction of the Secretary
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1 that the person otherwise liable for such

2 penalty did not know, and exercising rea3 sonable diligence would not have known,

4 that such failure existed.

5 ‘‘(ii) PENALTY NOT TO APPLY TO FAIL6 URES CORRECTED WITHIN CERTAIN PERI7 ODS.—No penalty shall be imposed by sub8 paragraph (A) on any failure if—

9 ‘‘(I) such failure was due to rea10 sonable cause and not to willful ne11 glect; and

12 ‘‘(II) such failure is corrected dur13 ing the 30-day period beginning on the

14 first date the person otherwise liable

15 for such penalty knew, or exercising

16 reasonable diligence would have known,

17 that such failure existed.

18 ‘‘(iii) OVERALL LIMITATION FOR UNIN19 TENTIONAL FAILURES.—In the case of fail20 ures which are due to reasonable cause and

21 not to willful neglect, the penalty imposed

22 by subparagraph (A) for failures shall not

23 exceed the amount equal to the lesser of—

24 ‘‘(I) 10 percent of the aggregate

25 amount paid or incurred by the em-
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HR 493 EAS1S

1 ployer (or predecessor employer) dur2 ing the preceding taxable year for

3 group health plans; or

4 ‘‘(II) $500,000.

5 ‘‘(E) WAIVER BY SECRETARY.—In the case

6 of a failure which is due to reasonable cause and

7 not to willful neglect, the Secretary may waive

8 part or all of the penalty imposed by subpara9 graph (A) to the extent that the payment of such

10 penalty would be excessive relative to the failure

11 involved.’’.

12 (b) AMENDMENT RELATING TO THE INDIVIDUAL MAR13 KET.—

14 (1) IN GENERAL.—The first subpart 3 of part B

15 of title XXVII of the Public Health Service Act (42

16 U.S.C. 300gg–51 et seq.) (relating to other require17 ments) is amended—

18 (A) by redesignating such subpart as sub19 part 2; and

20 (B) by adding at the end the following:

21 ‘‘SEC. 2753. PROHIBITION OF HEALTH DISCRIMINATION ON

22 THE BASIS OF GENETIC INFORMATION.

23 ‘‘(a) PROHIBITION ON GENETIC INFORMATION AS A

24 CONDITION OF ELIGIBILITY.—
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1 ‘‘(1) IN GENERAL.—A health insurance issuer of2 fering health insurance coverage in the individual

3 market may not establish rules for the eligibility (in4 cluding continued eligibility) of any individual to en5 roll in individual health insurance coverage based on

6 genetic information.

7 ‘‘(2) RULE OF CONSTRUCTION.—Nothing in

8 paragraph (1) or in paragraphs (1) and (2) of sub9 section (e) shall be construed to preclude a health in10 surance issuer from establishing rules for eligibility

11 for an individual to enroll in individual health insur12 ance coverage based on the manifestation of a disease

13 or disorder in that individual, or in a family member

14 of such individual where such family member is cov15 ered under the policy that covers such individual.

16 ‘‘(b) PROHIBITION ON GENETIC INFORMATION IN SET17 TING PREMIUM RATES.—

18 ‘‘(1) IN GENERAL.—A health insurance issuer of19 fering health insurance coverage in the individual

20 market shall not adjust premium or contribution

21 amounts for an individual on the basis of genetic in22 formation concerning the individual or a family

23 member of the individual.

24 ‘‘(2) RULE OF CONSTRUCTION.—Nothing in

25 paragraph (1) or in paragraphs (1) and (2) of sub-
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1 section (e) shall be construed to preclude a health in2 surance issuer from adjusting premium or contribu3 tion amounts for an individual on the basis of a

4 manifestation of a disease or disorder in that indi5 vidual, or in a family member of such individual

6 where such family member is covered under the policy

7 that covers such individual. In such case, the mani8 festation of a disease or disorder in one individual

9 cannot also be used as genetic information about

10 other individuals covered under the policy issued to

11 such individual and to further increase premiums or

12 contribution amounts.

13 ‘‘(c) PROHIBITION ON GENETIC INFORMATION AS PRE14 EXISTING CONDITION.—

15 ‘‘(1) IN GENERAL.—A health insurance issuer of16 fering health insurance coverage in the individual

17 market may not, on the basis of genetic information,

18 impose any preexisting condition exclusion (as de19 fined in section 2701(b)(1)(A)) with respect to such

20 coverage.

21 ‘‘(2) RULE OF CONSTRUCTION.—Nothing in

22 paragraph (1) or in paragraphs (1) and (2) of sub23 section (e) shall be construed to preclude a health in24 surance issuer from imposing any preexisting condi25 tion exclusion for an individual with respect to health
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HR 493 EAS1S

1 insurance coverage on the basis of a manifestation of

2 a disease or disorder in that individual.

3 ‘‘(d) GENETIC TESTING.—

4 ‘‘(1) LIMITATION ON REQUESTING OR REQUIRING

5 GENETIC TESTING.—A health insurance issuer offer6 ing health insurance coverage in the individual mar7 ket shall not request or require an individual or a

8 family member of such individual to undergo a ge9 netic test.

10 ‘‘(2) RULE OF CONSTRUCTION.—Paragraph (1)

11 shall not be construed to limit the authority of a

12 health care professional who is providing health care

13 services to an individual to request that such indi14 vidual undergo a genetic test.

15 ‘‘(3) RULE OF CONSTRUCTION REGARDING PAY16 MENT.—

17 ‘‘(A) IN GENERAL.—Nothing in paragraph

18 (1) shall be construed to preclude a health insur19 ance issuer offering health insurance coverage in

20 the individual market from obtaining and using

21 the results of a genetic test in making a deter22 mination regarding payment (as such term is

23 defined for the purposes of applying the regula24 tions promulgated by the Secretary under part C

25 of title XI of the Social Security Act and section
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HR 493 EAS1S

1 264 of the Health Insurance Portability and Ac2 countability Act of 1996, as may be revised from

3 time to time) consistent with subsection (a) and

4 (c).

5 ‘‘(B) LIMITATION.—For purposes of sub6 paragraph (A), a health insurance issuer offering

7 health insurance coverage in the individual mar8 ket may request only the minimum amount of

9 information necessary to accomplish the intended

10 purpose.

11 ‘‘(4) RESEARCH EXCEPTION.—Notwithstanding

12 paragraph (1), a health insurance issuer offering

13 health insurance coverage in the individual market

14 may request, but not require, that an individual or

15 a family member of such individual undergo a genetic

16 test if each of the following conditions is met:

17 ‘‘(A) The request is made pursuant to re18 search that complies with part 46 of title 45,

19 Code of Federal Regulations, or equivalent Fed20 eral regulations, and any applicable State or

21 local law or regulations for the protection of

22 human subjects in research.

23 ‘‘(B) The issuer clearly indicates to each in24 dividual, or in the case of a minor child, to the
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HR 493 EAS1S

1 legal guardian of such child, to whom the request

2 is made that—

3 ‘‘(i) compliance with the request is vol4 untary; and

5 ‘‘(ii) non-compliance will have no ef6 fect on enrollment status or premium or

7 contribution amounts.

8 ‘‘(C) No genetic information collected or ac9 quired under this paragraph shall be used for

10 underwriting purposes.

11 ‘‘(D) The issuer notifies the Secretary in

12 writing that the issuer is conducting activities

13 pursuant to the exception provided for under this

14 paragraph, including a description of the activi15 ties conducted.

16 ‘‘(E) The issuer complies with such other

17 conditions as the Secretary may by regulation

18 require for activities conducted under this para19 graph.

20 ‘‘(e) PROHIBITION ON COLLECTION OF GENETIC IN21 FORMATION.—

22 ‘‘(1) IN GENERAL.—A health insurance issuer of23 fering health insurance coverage in the individual

24 market shall not request, require, or purchase genetic
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HR 493 EAS1S

1 information for underwriting purposes (as defined in

2 section 2791).

3 ‘‘(2) PROHIBITION ON COLLECTION OF GENETIC

4 INFORMATION PRIOR TO ENROLLMENT.—A health in5 surance issuer offering health insurance coverage in

6 the individual market shall not request, require, or

7 purchase genetic information with respect to any in8 dividual prior to such individual’s enrollment under

9 the plan in connection with such enrollment.

10 ‘‘(3) INCIDENTAL COLLECTION.—If a health in11 surance issuer offering health insurance coverage in

12 the individual market obtains genetic information in13 cidental to the requesting, requiring, or purchasing of

14 other information concerning any individual, such re15 quest, requirement, or purchase shall not be consid16 ered a violation of paragraph (2) if such request, re17 quirement, or purchase is not in violation of para18 graph (1).

19 ‘‘(f) GENETIC INFORMATION OF A FETUS OR EM20 BRYO.—Any reference in this part to genetic information

21 concerning an individual or family member of an indi22 vidual shall—

23 ‘‘(1) with respect to such an individual or family

24 member of an individual who is a pregnant woman,
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HR 493 EAS1S

1 include genetic information of any fetus carried by

2 such pregnant woman; and

3 ‘‘(2) with respect to an individual or family

4 member utilizing an assisted reproductive technology,

5 include genetic information of any embryo legally

6 held by the individual or family member.’’.

7 (2) REMEDIES AND ENFORCEMENT.—Section

8 2761(b) of the Public Health Service Act (42 U.S.C.

9 300gg–61(b)) is amended to read as follows:

10 ‘‘(b) SECRETARIAL ENFORCEMENT AUTHORITY.—The

11 Secretary shall have the same authority in relation to en12 forcement of the provisions of this part with respect to

13 issuers of health insurance coverage in the individual mar14 ket in a State as the Secretary has under section 2722(b)(2),

15 and section 2722(b)(3) with respect to violations of genetic

16 nondiscrimination provisions, in relation to the enforce17 ment of the provisions of part A with respect to issuers of

18 health insurance coverage in the small group market in the

19 State.’’.

20 (c) ELIMINATION OF OPTION OF NON-FEDERAL GOV21 ERNMENTAL PLANS TO BE EXCEPTED FROM REQUIRE22 MENTS CONCERNING GENETIC INFORMATION.—Section

23 2721(b)(2) of the Public Health Service Act (42 U.S.C.

24 300gg–21(b)(2)) is amended—
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1 (1) in subparagraph (A), by striking ‘‘If the

2 plan sponsor’’ and inserting ‘‘Except as provided in

3 subparagraph (D), if the plan sponsor’’; and

4 (2) by adding at the end the following:

5 ‘‘(D) ELECTION NOT APPLICABLE TO RE6 QUIREMENTS CONCERNING GENETIC INFORMA7 TION.—The election described in subparagraph

8 (A) shall not be available with respect to the pro9 visions of subsections (a)(1)(F), (b)(3), (c), and

10 (d) of section 2702 and the provisions of sections

11 2701 and 2702(b) to the extent that such provi12 sions apply to genetic information.’’.

13 (d) REGULATIONS AND EFFECTIVE DATE.—

14 (1) REGULATIONS.—Not later than 12 months

15 after the date of enactment of this Act, the Secretary

16 of Health and Human Services shall issue final regu17 lations to carry out the amendments made by this sec18 tion.

19 (2) EFFECTIVE DATE.—The amendments made

20 by this section shall apply—

21 (A) with respect to group health plans, and

22 health insurance coverage offered in connection

23 with group health plans, for plan years begin24 ning after the date that is 1 year after the date

25 of enactment of this Act; and
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1 (B) with respect to health insurance cov2 erage offered, sold, issued, renewed, in effect, or

3 operated in the individual market after the date

4 that is 1 year after the date of enactment of this

5 Act.

6 SEC. 103. AMENDMENTS TO THE INTERNAL REVENUE CODE

7 OF 1986.

8 (a) NO DISCRIMINATION IN GROUP PREMIUMS BASED

9 ON GENETIC INFORMATION.—Subsection (b) of section 9802

10 of the Internal Revenue Code of 1986 is amended—

11 (1) in paragraph (2)(A), by inserting before the

12 semicolon the following: ‘‘except as provided in para13 graph (3)’’; and

14 (2) by adding at the end the following:

15 ‘‘(3) NO GROUP-BASED DISCRIMINATION ON

16 BASIS OF GENETIC INFORMATION.—

17 ‘‘(A) IN GENERAL.—For purposes of this

18 section, a group health plan may not adjust pre19 mium or contribution amounts for the group

20 covered under such plan on the basis of genetic

21 information.

22 ‘‘(B) RULE OF CONSTRUCTION.—Nothing in

23 subparagraph (A) or in paragraphs (1) and (2)

24 of subsection (d) shall be construed to limit the

25 ability of a group health plan to increase the
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HR 493 EAS1S

1 premium for an employer based on the mani2 festation of a disease or disorder of an indi3 vidual who is enrolled in the plan. In such case,

4 the manifestation of a disease or disorder in one

5 individual cannot also be used as genetic infor6 mation about other group members and to fur7 ther increase the premium for the employer.’’.

8 (b) LIMITATIONS ON GENETIC TESTING; PROHIBITION

9 ON COLLECTION OF GENETIC INFORMATION; APPLICATION

10 TO ALL PLANS.—Section 9802 of such Code is amended by

11 redesignating subsection (c) as subsection (f) and by insert12 ing after subsection (b) the following new subsections:

13 ‘‘(c) GENETIC TESTING.—

14 ‘‘(1) LIMITATION ON REQUESTING OR REQUIRING

15 GENETIC TESTING.—A group health plan may not re16 quest or require an individual or a family member of

17 such individual to undergo a genetic test.

18 ‘‘(2) RULE OF CONSTRUCTION.—Paragraph (1)

19 shall not be construed to limit the authority of a

20 health care professional who is providing health care

21 services to an individual to request that such indi22 vidual undergo a genetic test.

23 ‘‘(3) RULE OF CONSTRUCTION REGARDING PAY24 MENT.—
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1 ‘‘(A) IN GENERAL.—Nothing in paragraph

2 (1) shall be construed to preclude a group health

3 plan from obtaining and using the results of a

4 genetic test in making a determination regard5 ing payment (as such term is defined for the

6 purposes of applying the regulations promul7 gated by the Secretary of Health and Human

8 Services under part C of title XI of the Social

9 Security Act and section 264 of the Health In10 surance Portability and Accountability Act of

11 1996, as may be revised from time to time) con12 sistent with subsection (a).

13 ‘‘(B) LIMITATION.—For purposes of sub14 paragraph (A), a group health plan may request

15 only the minimum amount of information nec16 essary to accomplish the intended purpose.

17 ‘‘(4) RESEARCH EXCEPTION.—Notwithstanding

18 paragraph (1), a group health plan may request, but

19 not require, that a participant or beneficiary undergo

20 a genetic test if each of the following conditions is

21 met:

22 ‘‘(A) The request is made pursuant to re23 search that complies with part 46 of title 45,

24 Code of Federal Regulations, or equivalent Fed25 eral regulations, and any applicable State or
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HR 493 EAS1S

1 local law or regulations for the protection of

2 human subjects in research.

3 ‘‘(B) The plan clearly indicates to each par4 ticipant or beneficiary, or in the case of a minor

5 child, to the legal guardian of such beneficiary,

6 to whom the request is made that—

7 ‘‘(i) compliance with the request is vol8 untary; and

9 ‘‘(ii) non-compliance will have no ef10 fect on enrollment status or premium or

11 contribution amounts.

12 ‘‘(C) No genetic information collected or ac13 quired under this paragraph shall be used for

14 underwriting purposes.

15 ‘‘(D) The plan notifies the Secretary in

16 writing that the plan is conducting activities

17 pursuant to the exception provided for under this

18 paragraph, including a description of the activi19 ties conducted.

20 ‘‘(E) The plan complies with such other

21 conditions as the Secretary may by regulation

22 require for activities conducted under this para23 graph.

24 ‘‘(d) PROHIBITION ON COLLECTION OF GENETIC IN25 FORMATION.—
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HR 493 EAS1S

1 ‘‘(1) IN GENERAL.—A group health plan shall

2 not request, require, or purchase genetic information

3 for underwriting purposes (as defined in section

4 9832).

5 ‘‘(2) PROHIBITION ON COLLECTION OF GENETIC

6 INFORMATION PRIOR TO ENROLLMENT.—A group

7 health plan shall not request, require, or purchase ge8 netic information with respect to any individual

9 prior to such individual’s enrollment under the plan

10 or in connection with such enrollment.

11 ‘‘(3) INCIDENTAL COLLECTION.—If a group

12 health plan obtains genetic information incidental to

13 the requesting, requiring, or purchasing of other in14 formation concerning any individual, such request,

15 requirement, or purchase shall not be considered a

16 violation of paragraph (2) if such request, require17 ment, or purchase is not in violation of paragraph

18 (1).

19 ‘‘(e) APPLICATION TO ALL PLANS.—The provisions of

20 subsections (a)(1)(F), (b)(3), (c), and (d) and subsection

21 (b)(1) and section 9801 with respect to genetic information,

22 shall apply to group health plans without regard to section

23 9831(a)(2).’’.
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HR 493 EAS1S

1 (c) APPLICATION TO GENETIC INFORMATION OF A

2 FETUS OR EMBRYO.—Such section is further amended by

3 adding at the end the following:

4 ‘‘(f) GENETIC INFORMATION OF A FETUS OR EM5 BRYO.—Any reference in this chapter to genetic information

6 concerning an individual or family member of an indi7 vidual shall—

8 ‘‘(1) with respect to such an individual or family

9 member of an individual who is a pregnant woman,

10 include genetic information of any fetus carried by

11 such pregnant woman; and

12 ‘‘(2) with respect to an individual or family

13 member utilizing an assisted reproductive technology,

14 include genetic information of any embryo legally

15 held by the individual or family member.’’.

16 (d) DEFINITIONS.—Subsection (d) of section 9832 of

17 such Code is amended by adding at the end the following:

18 ‘‘(6) FAMILY MEMBER.—The term ‘family mem19 ber’ means, with respect to any individual—

20 ‘‘(A) a dependent (as such term is used for

21 purposes of section 9801(f)(2)) of such indi22 vidual, and

23 ‘‘(B) any other individual who is a first-de24 gree, second-degree, third-degree, or fourth-degree
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HR 493 EAS1S

1 relative of such individual or of an individual

2 described in subparagraph (A).

3 ‘‘(7) GENETIC INFORMATION.—

4 ‘‘(A) IN GENERAL.—The term ‘genetic infor5 mation’ means, with respect to any individual,

6 information about—

7 ‘‘(i) such individual’s genetic tests,

8 ‘‘(ii) the genetic tests of family mem9 bers of such individual, and

10 ‘‘(iii) the manifestation of a disease or

11 disorder in family members of such indi12 vidual.

13 ‘‘(B) INCLUSION OF GENETIC SERVICES AND

14 PARTICIPATION IN GENETIC RESEARCH.—Such

15 term includes, with respect to any individual,

16 any request for, or receipt of, genetic services, or

17 participation in clinical research which includes

18 genetic services, by such individual or any fam19 ily member of such individual.

20 ‘‘(C) EXCLUSIONS.—The term ‘genetic infor21 mation’ shall not include information about the

22 sex or age of any individual.

23 ‘‘(8) GENETIC TEST.—

24 ‘‘(A) IN GENERAL.—The term ‘genetic test’

25 means an analysis of human DNA, RNA, chro-
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HR 493 EAS1S

1 mosomes, proteins, or metabolites, that detects

2 genotypes, mutations, or chromosomal changes.

3 ‘‘(B) EXCEPTIONS.—The term ‘genetic test’

4 does not mean—

5 ‘‘(i) an analysis of proteins or metabo6 lites that does not detect genotypes,

7 mutations, or chromosomal changes, or

8 ‘‘(ii) an analysis of proteins or me9 tabolites that is directly related to a mani10 fested disease, disorder, or pathological con11 dition that could reasonably be detected by

12 a health care professional with appropriate

13 training and expertise in the field of medi14 cine involved.

15 ‘‘(9) GENETIC SERVICES.—The term ‘genetic

16 services’ means—

17 ‘‘(A) a genetic test;

18 ‘‘(B) genetic counseling (including obtain19 ing, interpreting, or assessing genetic informa20 tion); or

21 ‘‘(C) genetic education.

22 ‘‘(10) UNDERWRITING PURPOSES.—The term

23 ‘underwriting purposes’ means, with respect to any

24 group health plan, or health insurance coverage of25 fered in connection with a group health plan—
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HR 493 EAS1S

1 ‘‘(A) rules for, or determination of, eligi2 bility (including enrollment and continued eligi3 bility) for benefits under the plan or coverage;

4 ‘‘(B) the computation of premium or con5 tribution amounts under the plan or coverage;

6 ‘‘(C) the application of any pre-existing

7 condition exclusion under the plan or coverage;

8 and

9 ‘‘(D) other activities related to the creation,

10 renewal, or replacement of a contract of health

11 insurance or health benefits.’’.

12 (e) ENFORCEMENT.—

13 (1) IN GENERAL.—Subchapter C of chapter 100

14 of the Internal Revenue Code of 1986 (relating to gen15 eral provisions) is amended by adding at the end the

16 following new section:

17 ‘‘SEC. 9834. ENFORCEMENT.

18 ‘‘For the imposition of tax on any failure of a group

19 health plan to meet the requirements of this chapter, see

20 section 4980D.’’.

21 (2) CONFORMING AMENDMENT.—The table of sec22 tions for subchapter C of chapter 100 of such Code is

23 amended by adding at the end the following new item:

‘‘Sec. 9834. Enforcement.’’.

24 (f) REGULATIONS AND EFFECTIVE DATE.—
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HR 493 EAS1S

1 (1) REGULATIONS.—The Secretary of the Treas2 ury shall issue final regulations or other guidance not

3 later than 12 months after the date of the enactment

4 of this Act to carry out the amendments made by this

5 section.

6 (2) EFFECTIVE DATE.—The amendments made

7 by this section shall apply with respect to group

8 health plans for plan years beginning after the date

9 that is 1 year after the date of the enactment of this

10 Act.

11 SEC. 104. AMENDMENTS TO TITLE XVIII OF THE SOCIAL SE12 CURITY ACT RELATING TO MEDIGAP.

13 (a) NONDISCRIMINATION.—Section 1882(s)(2) of the

14 Social Security Act (42 U.S.C. 1395ss(s)(2)) is amended

15 by adding at the end the following:

16 ‘‘(E) An issuer of a medicare supplemental

17 policy shall not deny or condition the issuance

18 or effectiveness of the policy (including the impo19 sition of any exclusion of benefits under the pol20 icy based on a pre-existing condition) and shall

21 not discriminate in the pricing of the policy (in22 cluding the adjustment of premium rates) of an

23 individual on the basis of the genetic informa24 tion with respect to such individual.
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HR 493 EAS1S

1 ‘‘(F) RULE OF CONSTRUCTION.—Nothing in

2 subparagraph (E) or in subparagraphs (A) or

3 (B) of subsection (x)(2) shall be construed to

4 limit the ability of an issuer of a medicare sup5 plemental policy from, to the extent otherwise

6 permitted under this title—

7 ‘‘(i) denying or conditioning the

8 issuance or effectiveness of the policy or in9 creasing the premium for an employer

10 based on the manifestation of a disease or

11 disorder of an individual who is covered

12 under the policy; or

13 ‘‘(ii) increasing the premium for any

14 policy issued to an individual based on the

15 manifestation of a disease or disorder of an

16 individual who is covered under the policy

17 (in such case, the manifestation of a disease

18 or disorder in one individual cannot also be

19 used as genetic information about other

20 group members and to further increase the

21 premium for the employer).’’.

22 (b) LIMITATIONS ON GENETIC TESTING AND GENETIC

23 INFORMATION.—
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1 (1) IN GENERAL.—Section 1882 of the Social Se2 curity Act (42 U.S.C. 1395ss) is amended by adding

3 at the end the following:

4 ‘‘(x) LIMITATIONS ON GENETIC TESTING AND INFOR5 MATION.—

6 ‘‘(1) GENETIC TESTING.—

7 ‘‘(A) LIMITATION ON REQUESTING OR RE8 QUIRING GENETIC TESTING.—An issuer of a

9 medicare supplemental policy shall not request

10 or require an individual or a family member of

11 such individual to undergo a genetic test.

12 ‘‘(B) RULE OF CONSTRUCTION.—Subpara13 graph (A) shall not be construed to limit the au14 thority of a health care professional who is pro15 viding health care services to an individual to

16 request that such individual undergo a genetic

17 test.

18 ‘‘(C) RULE OF CONSTRUCTION REGARDING

19 PAYMENT.—

20 ‘‘(i) IN GENERAL.—Nothing in sub21 paragraph (A) shall be construed to pre22 clude an issuer of a medicare supplemental

23 policy from obtaining and using the results

24 of a genetic test in making a determination

25 regarding payment (as such term is defined
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1 for the purposes of applying the regulations

2 promulgated by the Secretary under part C

3 of title XI and section 264 of the Health In4 surance Portability and Accountability Act

5 of 1996, as may be revised from time to

6 time) consistent with subsection (s)(2)(E).

7 ‘‘(ii) LIMITATION.—For purposes of

8 clause (i), an issuer of a medicare supple9 mental policy may request only the min10 imum amount of information necessary to

11 accomplish the intended purpose.

12 ‘‘(D) RESEARCH EXCEPTION.—Notwith13 standing subparagraph (A), an issuer of a medi14 care supplemental policy may request, but not

15 require, that an individual or a family member

16 of such individual undergo a genetic test if each

17 of the following conditions is met:

18 ‘‘(i) The request is made pursuant to

19 research that complies with part 46 of title

20 45, Code of Federal Regulations, or equiva21 lent Federal regulations, and any applicable

22 State or local law or regulations for the

23 protection of human subjects in research.

24 ‘‘(ii) The issuer clearly indicates to

25 each individual, or in the case of a minor
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1 child, to the legal guardian of such child, to

2 whom the request is made that—

3 ‘‘(I) compliance with the request

4 is voluntary; and

5 ‘‘(II) non-compliance will have no

6 effect on enrollment status or premium

7 or contribution amounts.

8 ‘‘(iii) No genetic information collected

9 or acquired under this subparagraph shall

10 be used for underwriting, determination of

11 eligibility to enroll or maintain enrollment

12 status, premium rating, or the creation, re13 newal, or replacement of a plan, contract,

14 or coverage for health insurance or health

15 benefits.

16 ‘‘(iv) The issuer notifies the Secretary

17 in writing that the issuer is conducting ac18 tivities pursuant to the exception provided

19 for under this subparagraph, including a

20 description of the activities conducted.

21 ‘‘(v) The issuer complies with such

22 other conditions as the Secretary may by

23 regulation require for activities conducted

24 under this subparagraph.
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1 ‘‘(2) PROHIBITION ON COLLECTION OF GENETIC

2 INFORMATION.—

3 ‘‘(A) IN GENERAL.—An issuer of a medicare

4 supplemental policy shall not request, require, or

5 purchase genetic information for underwriting

6 purposes (as defined in paragraph (3)).

7 ‘‘(B) PROHIBITION ON COLLECTION OF GE8 NETIC INFORMATION PRIOR TO ENROLLMENT.—

9 An issuer of a medicare supplemental policy

10 shall not request, require, or purchase genetic in11 formation with respect to any individual prior

12 to such individual’s enrollment under the policy

13 in connection with such enrollment.

14 ‘‘(C) INCIDENTAL COLLECTION.—If an

15 issuer of a medicare supplemental policy obtains

16 genetic information incidental to the requesting,

17 requiring, or purchasing of other information

18 concerning any individual, such request, require19 ment, or purchase shall not be considered a vio20 lation of subparagraph (B) if such request, re21 quirement, or purchase is not in violation of sub22 paragraph (A).

23 ‘‘(3) DEFINITIONS.—In this subsection:

24 ‘‘(A) FAMILY MEMBER.—The term ‘family

25 member’ means with respect to an individual,
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1 any other individual who is a first-degree, sec2 ond-degree, third-degree, or fourth-degree relative

3 of such individual.

4 ‘‘(B) GENETIC INFORMATION.—

5 ‘‘(i) IN GENERAL.—The term ‘genetic

6 information’ means, with respect to any in7 dividual, information about—

8 ‘‘(I) such individual’s genetic

9 tests,

10 ‘‘(II) the genetic tests of family

11 members of such individual, and

12 ‘‘(III) subject to clause (iv), the

13 manifestation of a disease or disorder

14 in family members of such individual.

15 ‘‘(ii) INCLUSION OF GENETIC SERVICES

16 AND PARTICIPATION IN GENETIC RE17 SEARCH.—Such term includes, with respect

18 to any individual, any request for, or re19 ceipt of, genetic services, or participation in

20 clinical research which includes genetic

21 services, by such individual or any family

22 member of such individual.

23 ‘‘(iii) EXCLUSIONS.—The term ‘genetic

24 information’ shall not include information

25 about the sex or age of any individual.
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1 ‘‘(C) GENETIC TEST.—

2 ‘‘(i) IN GENERAL.—The term ‘genetic

3 test’ means an analysis of human DNA,

4 RNA, chromosomes, proteins, or metabolites,

5 that detects genotypes, mutations, or chro6 mosomal changes.

7 ‘‘(ii) EXCEPTIONS.—The term ‘genetic

8 test’ does not mean—

9 ‘‘(I) an analysis of proteins or

10 metabolites that does not detect

11 genotypes, mutations, or chromosomal

12 changes; or

13 ‘‘(II) an analysis of proteins or

14 metabolites that is directly related to a

15 manifested disease, disorder, or patho16 logical condition that could reasonably

17 be detected by a health care profes18 sional with appropriate training and

19 expertise in the field of medicine in20 volved.

21 ‘‘(D) GENETIC SERVICES.—The term ‘ge22 netic services’ means—

23 ‘‘(i) a genetic test;
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1 ‘‘(ii) genetic counseling (including ob2 taining, interpreting, or assessing genetic

3 information); or

4 ‘‘(iii) genetic education.

5 ‘‘(E) UNDERWRITING PURPOSES.—The term

6 ‘underwriting purposes’ means, with respect to a

7 medicare supplemental policy—

8 ‘‘(i) rules for, or determination of, eli9 gibility (including enrollment and contin10 ued eligibility) for benefits under the policy;

11 ‘‘(ii) the computation of premium or

12 contribution amounts under the policy;

13 ‘‘(iii) the application of any pre-exist14 ing condition exclusion under the policy;

15 and

16 ‘‘(iv) other activities related to the cre17 ation, renewal, or replacement of a contract

18 of health insurance or health benefits.

19 ‘‘(F) ISSUER OF A MEDICARE SUPPLE20 MENTAL POLICY.—The term ‘issuer of a medicare

21 supplemental policy’ includes a third-party ad22 ministrator or other person acting for or on be23 half of such issuer.’’.

24 (2) APPLICATION TO GENETIC INFORMATION OF A

25 FETUS OR EMBRYO.—Section 1882(x) of such Act, as
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1 added by paragraph (1), is further amended by add2 ing at the end the following:

3 ‘‘(4) GENETIC INFORMATION OF A FETUS OR EM4 BRYO.—Any reference in this section to genetic infor5 mation concerning an individual or family member

6 of an individual shall—

7 ‘‘(A) with respect to such an individual or

8 family member of an individual who is a preg9 nant woman, include genetic information of any

10 fetus carried by such pregnant woman; and

11 ‘‘(B) with respect to an individual or fam12 ily member utilizing an assisted reproductive

13 technology, include genetic information of any

14 embryo legally held by the individual or family

15 member.’’.

16 (3) CONFORMING AMENDMENT.—Section 1882(o)

17 of the Social Security Act (42 U.S.C. 1395ss(o)) is

18 amended by adding at the end the following:

19 ‘‘(4) The issuer of the medicare supplemental

20 policy complies with subsection (s)(2)(E) and sub21 section (x).’’.

22 (c) EFFECTIVE DATE.—The amendments made by this

23 section shall apply with respect to an issuer of a medicare

24 supplemental policy for policy years beginning on or after
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1 the date that is 1 year after the date of enactment of this

2 Act.

3 (d) TRANSITION PROVISIONS.—

4 (1) IN GENERAL.—If the Secretary of Health and

5 Human Services identifies a State as requiring a

6 change to its statutes or regulations to conform its

7 regulatory program to the changes made by this sec8 tion, the State regulatory program shall not be con9 sidered to be out of compliance with the requirements

10 of section 1882 of the Social Security Act due solely

11 to failure to make such change until the date specified

12 in paragraph (4).

13 (2) NAIC STANDARDS.—If, not later than June

14 30, 2008, the National Association of Insurance Com15 missioners (in this subsection referred to as the

16 ‘‘NAIC’’) modifies its NAIC Model Regulation relat17 ing to section 1882 of the Social Security Act (re18 ferred to in such section as the 1991 NAIC Model

19 Regulation, as subsequently modified) to conform to

20 the amendments made by this section, such revised

21 regulation incorporating the modifications shall be

22 considered to be the applicable NAIC model regulation

23 (including the revised NAIC model regulation and the

24 1991 NAIC Model Regulation) for the purposes of

25 such section.
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1 (3) SECRETARY STANDARDS.—If the NAIC does

2 not make the modifications described in paragraph

3 (2) within the period specified in such paragraph, the

4 Secretary of Health and Human Services shall, not

5 later than October 1, 2008, make the modifications

6 described in such paragraph and such revised regula7 tion incorporating the modifications shall be consid8 ered to be the appropriate regulation for the purposes

9 of such section.

10 (4) DATE SPECIFIED.—

11 (A) IN GENERAL.—Subject to subparagraph

12 (B), the date specified in this paragraph for a

13 State is the earlier of—

14 (i) the date the State changes its stat15 utes or regulations to conform its regulatory

16 program to the changes made by this sec17 tion, or

18 (ii) October 1, 2008.

19 (B) ADDITIONAL LEGISLATIVE ACTION RE20 QUIRED.—In the case of a State which the Sec21 retary identifies as—

22 (i) requiring State legislation (other

23 than legislation appropriating funds) to

24 conform its regulatory program to the

25 changes made in this section, but
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1 (ii) having a legislature which is not

2 scheduled to meet in 2008 in a legislative

3 session in which such legislation may be

4 considered, the date specified in this para5 graph is the first day of the first calendar

6 quarter beginning after the close of the first

7 legislative session of the State legislature

8 that begins on or after July 1, 2008. For

9 purposes of the previous sentence, in the

10 case of a State that has a 2-year legislative

11 session, each year of such session shall be

12 deemed to be a separate regular session of

13 the State legislature.

14 SEC. 105. PRIVACY AND CONFIDENTIALITY.

15 (a) IN GENERAL.—Part C of title XI of the Social Se16 curity Act is amended by adding at the end the following

17 new section:

18 ‘‘APPLICATION OF HIPAA REGULATIONS TO GENETIC

19 INFORMATION

20 ‘‘SEC. 1180. (a) IN GENERAL.—The Secretary shall re21 vise the HIPAA privacy regulation (as defined in sub22 section (b)) so it is consistent with the following:

23 ‘‘(1) Genetic information shall be treated as

24 health information described in section 1171(4)(B).

25 ‘‘(2) The use or disclosure by a covered entity

26 that is a group health plan, health insurance issuer
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1 that issues health insurance coverage, or issuer of a

2 medicare supplemental policy of protected health in3 formation that is genetic information about an indi4 vidual for underwriting purposes under the group

5 health plan, health insurance coverage, or medicare

6 supplemental policy shall not be a permitted use or

7 disclosure.

8 ‘‘(b) DEFINITIONS.—For purposes of this section:

9 ‘‘(1) GENETIC INFORMATION; GENETIC TEST;

10 FAMILY MEMBER.—The terms ‘genetic information’,

11 ‘genetic test’, and ‘family member’ have the meanings

12 given such terms in section 2791 of the Public Health

13 Service Act (42 U.S.C. 300gg–91), as amended by the

14 Genetic Information Nondiscrimination Act of 2007.

15 ‘‘(2) GROUP HEALTH PLAN; HEALTH INSURANCE

16 COVERAGE; MEDICARE SUPPLEMENTAL POLICY.—The

17 terms ‘group health plan’ and ‘health insurance cov18 erage’ have the meanings given such terms under sec19 tion 2791 of the Public Health Service Act (42 U.S.C.

20 300gg–91), and the term ‘medicare supplemental pol21 icy’ has the meaning given such term in section

22 1882(g).

23 ‘‘(3) HIPAA PRIVACY REGULATION.—The term

24 ‘HIPAA privacy regulation’ means the regulations

25 promulgated by the Secretary under this part and
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1 section 264 of the Health Insurance Portability and

2 Accountability Act of 1996 (42 U.S.C. 1320d–2 note).

3 ‘‘(4) UNDERWRITING PURPOSES.—The term ‘un4 derwriting purposes’ means, with respect to a group

5 health plan, health insurance coverage, or a medicare

6 supplemental policy—

7 ‘‘(A) rules for, or determination of, eligi8 bility (including enrollment and continued eligi9 bility) for, or determination of, benefits under

10 the plan, coverage, or policy;

11 ‘‘(B) the computation of premium or con12 tribution amounts under the plan, coverage, or

13 policy;

14 ‘‘(C) the application of any pre-existing

15 condition exclusion under the plan, coverage, or

16 policy; and

17 ‘‘(D) other activities related to the creation,

18 renewal, or replacement of a contract of health

19 insurance or health benefits.

20 ‘‘(c) PROCEDURE.—The revisions under subsection (a)

21 shall be made by notice in the Federal Register published

22 not later than 60 days after the date of the enactment of

23 this section and shall be effective upon publication, without

24 opportunity for any prior public comment, but may be re-
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1 vised, consistent with this section, after opportunity for

2 public comment.

3 ‘‘(d) ENFORCEMENT.—In addition to any other sanc4 tions or remedies that may be available under law, a cov5 ered entity that is a group health plan, health insurance

6 issuer, or issuer of a medicare supplemental policy and that

7 violates the HIPAA privacy regulation (as revised under

8 subsection (a) or otherwise) with respect to the use or disclo9 sure of genetic information shall be subject to the penalties

10 described in sections 1176 and 1177 in the same manner

11 and to the same extent that such penalties apply to viola12 tions of this part.’’.

13 (b) REGULATIONS; EFFECTIVE DATE.—

14 (1) REGULATIONS.—Not later than 12 months

15 after the date of the enactment of this Act, the Sec16 retary of Health and Human Services shall issue

17 final regulations to carry out the revision required by

18 section 1180(a) of the Social Security Act, as added

19 by subsection (a). The Secretary has the sole authority

20 to promulgate such regulations, but shall promulgate

21 such regulations in consultation with the Secretaries

22 of Labor and the Treasury.

23 (2) EFFECTIVE DATE.—The amendment made by

24 subsection (a) shall take effect on the date that is 1

25 year after the date of the enactment of this Act.
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1 SEC. 106. ASSURING COORDINATION.

2 Except as provided in section 105(b)(1), the Secretary

3 of Health and Human Services, the Secretary of Labor, and

4 the Secretary of the Treasury shall ensure, through the exe5 cution of an interagency memorandum of understanding

6 among such Secretaries, that—

7 (1) regulations, rulings, and interpretations

8 issued by such Secretaries relating to the same matter

9 over which two or more such Secretaries have respon10 sibility under this title (and the amendments made by

11 this title) are administered so as to have the same ef12 fect at all times; and

13 (2) coordination of policies relating to enforcing

14 the same requirements through such Secretaries in

15 order to have a coordinated enforcement strategy that

16 avoids duplication of enforcement efforts and assigns

17 priorities in enforcement.

18 TITLE II—PROHIBITING EMPLOY19 MENT DISCRIMINATION ON

20 THE BASIS OF GENETIC IN21 FORMATION

22 SEC. 201. DEFINITIONS.

23 In this title:

24 (1) COMMISSION.—The term ‘‘Commission’’

25 means the Equal Employment Opportunity Commis-
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1 sion as created by section 705 of the Civil Rights Act

2 of 1964 (42 U.S.C. 2000e–4).

3 (2) EMPLOYEE; EMPLOYER; EMPLOYMENT AGEN4 CY; LABOR ORGANIZATION; MEMBER.—

5 (A) IN GENERAL.—The term ‘‘employee’’

6 means—

7 (i) an employee (including an appli8 cant), as defined in section 701(f) of the

9 Civil Rights Act of 1964 (42 U.S.C.

10 2000e(f));

11 (ii) a State employee (including an

12 applicant) described in section 304(a) of the

13 Government Employee Rights Act of 1991

14 (42 U.S.C. 2000e–16c(a));

15 (iii) a covered employee (including an

16 applicant), as defined in section 101 of the

17 Congressional Accountability Act of 1995 (2

18 U.S.C. 1301);

19 (iv) a covered employee (including an

20 applicant), as defined in section 411(c) of

21 title 3, United States Code; or

22 (v) an employee or applicant to which

23 section 717(a) of the Civil Rights Act of

24 1964 (42 U.S.C. 2000e–16(a)) applies.
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1 (B) EMPLOYER.—The term ‘‘employer’’

2 means—

3 (i) an employer (as defined in section

4 701(b) of the Civil Rights Act of 1964 (42

5 U.S.C. 2000e(b)));

6 (ii) an entity employing a State em7 ployee described in section 304(a) of the

8 Government Employee Rights Act of 1991;

9 (iii) an employing office, as defined in

10 section 101 of the Congressional Account11 ability Act of 1995;

12 (iv) an employing office, as defined in

13 section 411(c) of title 3, United States Code;

14 or

15 (v) an entity to which section 717(a) of

16 the Civil Rights Act of 1964 applies.

17 (C) EMPLOYMENT AGENCY; LABOR ORGANI18 ZATION.—The terms ‘‘employment agency’’ and

19 ‘‘labor organization’’ have the meanings given

20 the terms in section 701 of the Civil Rights Act

21 of 1964 (42 U.S.C. 2000e).

22 (D) MEMBER.—The term ‘‘member’’, with

23 respect to a labor organization, includes an ap24 plicant for membership in a labor organization.
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1 (3) FAMILY MEMBER.—The term ‘‘family mem2 ber’’ means, with respect to an individual—

3 (A) a dependent (as such term is used for

4 purposes of section 701(f)(2) of the Employee Re5 tirement Income Security Act of 1974) of such

6 individual, and

7 (B) any other individual who is a first-de8 gree, second-degree, third-degree, or fourth-degree

9 relative of such individual or of an individual

10 described in subparagraph (A).

11 (4) GENETIC INFORMATION.—

12 (A) IN GENERAL.—The term ‘‘genetic infor13 mation’’ means, with respect to any individual,

14 information about—

15 (i) such individual’s genetic tests,

16 (ii) the genetic tests of family members

17 of such individual, and

18 (iii) the manifestation of a disease or

19 disorder in family members of such indi20 vidual.

21 (B) INCLUSION OF GENETIC SERVICES AND

22 PARTICIPATION IN GENETIC RESEARCH.—Such

23 term includes, with respect to any individual,

24 any request for, or receipt of, genetic services, or

25 participation in clinical research which includes
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1 genetic services, by such individual or any fam2 ily member of such individual.

3 (C) EXCLUSIONS.—The term ‘‘genetic infor4 mation’’ shall not include information about the

5 sex or age of any individual.

6 (5) GENETIC MONITORING.—The term ‘‘genetic

7 monitoring’’ means the periodic examination of em8 ployees to evaluate acquired modifications to their ge9 netic material, such as chromosomal damage or evi10 dence of increased occurrence of mutations, that may

11 have developed in the course of employment due to ex12 posure to toxic substances in the workplace, in order

13 to identify, evaluate, and respond to the effects of or

14 control adverse environmental exposures in the work15 place.

16 (6) GENETIC SERVICES.—The term ‘‘genetic serv17 ices’’ means—

18 (A) a genetic test;

19 (B) genetic counseling (including obtaining,

20 interpreting, or assessing genetic information);

21 or

22 (C) genetic education.

23 (7) GENETIC TEST.—

24 (A) IN GENERAL.—The term ‘‘genetic test’’

25 means an analysis of human DNA, RNA, chro-
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1 mosomes, proteins, or metabolites, that detects

2 genotypes, mutations, or chromosomal changes.

3 (B) EXCEPTIONS.—The term ‘‘genetic test’’

4 does not mean an analysis of proteins or metabo5 lites that does not detect genotypes, mutations, or

6 chromosomal changes.

7 SEC. 202. EMPLOYER PRACTICES.

8 (a) DISCRIMINATION BASED ON GENETIC INFORMA9 TION.—It shall be an unlawful employment practice for an

10 employer—

11 (1) to fail or refuse to hire, or to discharge, any

12 employee, or otherwise to discriminate against any

13 employee with respect to the compensation, terms,

14 conditions, or privileges of employment of the em15 ployee, because of genetic information with respect to

16 the employee; or

17 (2) to limit, segregate, or classify the employees

18 of the employer in any way that would deprive or

19 tend to deprive any employee of employment opportu20 nities or otherwise adversely affect the status of the

21 employee as an employee, because of genetic informa22 tion with respect to the employee.

23 (b) ACQUISITION OF GENETIC INFORMATION.—It shall

24 be an unlawful employment practice for an employer to re25 quest, require, or purchase genetic information with respect
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1 to an employee or a family member of the employee

2 except—

3 (1) where an employer inadvertently requests or

4 requires family medical history of the employee or

5 family member of the employee;

6 (2) where—

7 (A) health or genetic services are offered by

8 the employer, including such services offered as

9 part of a wellness program;

10 (B) the employee provides prior, knowing,

11 voluntary, and written authorization;

12 (C) only the employee (or family member if

13 the family member is receiving genetic services)

14 and the licensed health care professional or board

15 certified genetic counselor involved in providing

16 such services receive individually identifiable in17 formation concerning the results of such services;

18 and

19 (D) any individually identifiable genetic

20 information provided under subparagraph (C) in

21 connection with the services provided under sub22 paragraph (A) is only available for purposes of

23 such services and shall not be disclosed to the em24 ployer except in aggregate terms that do not dis25 close the identity of specific employees;
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1 (3) where an employer requests or requires fam2 ily medical history from the employee to comply with

3 the certification provisions of section 103 of the Fam4 ily and Medical Leave Act of 1993 (29 U.S.C. 2613)

5 or such requirements under State family and medical

6 leave laws;

7 (4) where an employer purchases documents that

8 are commercially and publicly available (including

9 newspapers, magazines, periodicals, and books, but

10 not including medical databases or court records) that

11 include family medical history;

12 (5) where the information involved is to be used

13 for genetic monitoring of the biological effects of toxic

14 substances in the workplace, but only if—

15 (A) the employer provides written notice of

16 the genetic monitoring to the employee;

17 (B)(i) the employee provides prior, know18 ing, voluntary, and written authorization; or

19 (ii) the genetic monitoring is required by

20 Federal or State law;

21 (C) the employee is informed of individual

22 monitoring results;

23 (D) the monitoring is in compliance with—

24 (i) any Federal genetic monitoring reg25 ulations, including any such regulations
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1 that may be promulgated by the Secretary

2 of Labor pursuant to the Occupational

3 Safety and Health Act of 1970 (29 U.S.C.

4 651 et seq.), the Federal Mine Safety and

5 Health Act of 1977 (30 U.S.C. 801 et seq.),

6 or the Atomic Energy Act of 1954 (42

7 U.S.C. 2011 et seq.); or

8 (ii) State genetic monitoring regula9 tions, in the case of a State that is imple10 menting genetic monitoring regulations

11 under the authority of the Occupational

12 Safety and Health Act of 1970 (29 U.S.C.

13 651 et seq.); and

14 (E) the employer, excluding any licensed

15 health care professional or board certified genetic

16 counselor that is involved in the genetic moni17 toring program, receives the results of the moni18 toring only in aggregate terms that do not dis19 close the identity of specific employees; or

20 (6) where the employer conducts DNA analysis

21 for law enforcement purposes as a forensic laboratory,

22 and such analysis is included in the Combined DNA

23 Index System pursuant to section 210304 of the Vio24 lent Crime Control and Law Enforcement Act of 1994

25 (42 U.S.C. 14132), and requests or requires genetic
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1 information of such employer’s employees, but only to

2 the extent that such genetic information is used for

3 analysis of DNA identification markers for quality

4 control to detect sample contamination.

5 (c) PRESERVATION OF PROTECTIONS.—In the case of

6 information to which any of paragraphs (1) through (6)

7 of subsection (b) applies, such information may not be used

8 in violation of paragraph (1) or (2) of subsection (a) or

9 treated or disclosed in a manner that violates section 206.

10 SEC. 203. EMPLOYMENT AGENCY PRACTICES.

11 (a) DISCRIMINATION BASED ON GENETIC INFORMA12 TION.—It shall be an unlawful employment practice for an

13 employment agency—

14 (1) to fail or refuse to refer for employment, or

15 otherwise to discriminate against, any individual be16 cause of genetic information with respect to the indi17 vidual;

18 (2) to limit, segregate, or classify individuals or

19 fail or refuse to refer for employment any individual

20 in any way that would deprive or tend to deprive any

21 individual of employment opportunities, or otherwise

22 adversely affect the status of the individual as an em23 ployee, because of genetic information with respect to

24 the individual; or
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1 (3) to cause or attempt to cause an employer to

2 discriminate against an individual in violation of

3 this title.

4 (b) ACQUISITION OF GENETIC INFORMATION.—It shall

5 be an unlawful employment practice for an employment

6 agency to request, require, or purchase genetic information

7 with respect to an individual or a family member of the

8 individual except—

9 (1) where an employment agency inadvertently

10 requests or requires family medical history of the in11 dividual or family member of the individual;

12 (2) where—

13 (A) health or genetic services are offered by

14 the employment agency, including such services

15 offered as part of a wellness program;

16 (B) the individual provides prior, knowing,

17 voluntary, and written authorization;

18 (C) only the individual (or family member

19 if the family member is receiving genetic serv20 ices) and the licensed health care professional or

21 board certified genetic counselor involved in pro22 viding such services receive individually identifi23 able information concerning the results of such

24 services; and
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1 (D) any individually identifiable genetic

2 information provided under subparagraph (C) in

3 connection with the services provided under sub4 paragraph (A) is only available for purposes of

5 such services and shall not be disclosed to the em6 ployment agency except in aggregate terms that

7 do not disclose the identity of specific individ8 uals;

9 (3) where an employment agency requests or re10 quires family medical history from the individual to

11 comply with the certification provisions of section 103

12 of the Family and Medical Leave Act of 1993 (29

13 U.S.C. 2613) or such requirements under State family

14 and medical leave laws;

15 (4) where an employment agency purchases doc16 uments that are commercially and publicly available

17 (including newspapers, magazines, periodicals, and

18 books, but not including medical databases or court

19 records) that include family medical history; or

20 (5) where the information involved is to be used

21 for genetic monitoring of the biological effects of toxic

22 substances in the workplace, but only if—

23 (A) the employment agency provides written

24 notice of the genetic monitoring to the indi25 vidual;
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1 (B)(i) the individual provides prior, know2 ing, voluntary, and written authorization; or

3 (ii) the genetic monitoring is required by

4 Federal or State law;

5 (C) the individual is informed of individual

6 monitoring results;

7 (D) the monitoring is in compliance with—

8 (i) any Federal genetic monitoring reg9 ulations, including any such regulations

10 that may be promulgated by the Secretary

11 of Labor pursuant to the Occupational

12 Safety and Health Act of 1970 (29 U.S.C.

13 651 et seq.), the Federal Mine Safety and

14 Health Act of 1977 (30 U.S.C. 801 et seq.),

15 or the Atomic Energy Act of 1954 (42

16 U.S.C. 2011 et seq.); or

17 (ii) State genetic monitoring regula18 tions, in the case of a State that is imple19 menting genetic monitoring regulations

20 under the authority of the Occupational

21 Safety and Health Act of 1970 (29 U.S.C.

22 651 et seq.); and

23 (E) the employment agency, excluding any

24 licensed health care professional or board cer25 tified genetic counselor that is involved in the ge-
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1 netic monitoring program, receives the results of

2 the monitoring only in aggregate terms that do

3 not disclose the identity of specific individuals.

4 (c) PRESERVATION OF PROTECTIONS.—In the case of

5 information to which any of paragraphs (1) through (5)

6 of subsection (b) applies, such information may not be used

7 in violation of paragraph (1), (2), or (3) of subsection (a)

8 or treated or disclosed in a manner that violates section

9 206.

10 SEC. 204. LABOR ORGANIZATION PRACTICES.

11 (a) DISCRIMINATION BASED ON GENETIC INFORMA12 TION.—It shall be an unlawful employment practice for a

13 labor organization—

14 (1) to exclude or to expel from the membership

15 of the organization, or otherwise to discriminate

16 against, any member because of genetic information

17 with respect to the member;

18 (2) to limit, segregate, or classify the members of

19 the organization, or fail or refuse to refer for employ20 ment any member, in any way that would deprive or

21 tend to deprive any member of employment opportu22 nities, or otherwise adversely affect the status of the

23 member as an employee, because of genetic informa24 tion with respect to the member; or
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1 (3) to cause or attempt to cause an employer to

2 discriminate against a member in violation of this

3 title.

4 (b) ACQUISITION OF GENETIC INFORMATION.—It shall

5 be an unlawful employment practice for a labor organiza6 tion to request, require, or purchase genetic information

7 with respect to a member or a family member of the member

8 except—

9 (1) where a labor organization inadvertently re10 quests or requires family medical history of the mem11 ber or family member of the member;

12 (2) where—

13 (A) health or genetic services are offered by

14 the labor organization, including such services

15 offered as part of a wellness program;

16 (B) the member provides prior, knowing,

17 voluntary, and written authorization;

18 (C) only the member (or family member if

19 the family member is receiving genetic services)

20 and the licensed health care professional or board

21 certified genetic counselor involved in providing

22 such services receive individually identifiable in23 formation concerning the results of such services;

24 and
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1 (D) any individually identifiable genetic

2 information provided under subparagraph (C) in

3 connection with the services provided under sub4 paragraph (A) is only available for purposes of

5 such services and shall not be disclosed to the

6 labor organization except in aggregate terms that

7 do not disclose the identity of specific members;

8 (3) where a labor organization requests or re9 quires family medical history from the members to

10 comply with the certification provisions of section 103

11 of the Family and Medical Leave Act of 1993 (29

12 U.S.C. 2613) or such requirements under State family

13 and medical leave laws;

14 (4) where a labor organization purchases docu15 ments that are commercially and publicly available

16 (including newspapers, magazines, periodicals, and

17 books, but not including medical databases or court

18 records) that include family medical history; or

19 (5) where the information involved is to be used

20 for genetic monitoring of the biological effects of toxic

21 substances in the workplace, but only if—

22 (A) the labor organization provides written

23 notice of the genetic monitoring to the member;

24 (B)(i) the member provides prior, knowing,

25 voluntary, and written authorization; or
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1 (ii) the genetic monitoring is required by

2 Federal or State law;

3 (C) the member is informed of individual

4 monitoring results;

5 (D) the monitoring is in compliance with—

6 (i) any Federal genetic monitoring reg7 ulations, including any such regulations

8 that may be promulgated by the Secretary

9 of Labor pursuant to the Occupational

10 Safety and Health Act of 1970 (29 U.S.C.

11 651 et seq.), the Federal Mine Safety and

12 Health Act of 1977 (30 U.S.C. 801 et seq.),

13 or the Atomic Energy Act of 1954 (42

14 U.S.C. 2011 et seq.); or

15 (ii) State genetic monitoring regula16 tions, in the case of a State that is imple17 menting genetic monitoring regulations

18 under the authority of the Occupational

19 Safety and Health Act of 1970 (29 U.S.C.

20 651 et seq.); and

21 (E) the labor organization, excluding any

22 licensed health care professional or board cer23 tified genetic counselor that is involved in the ge24 netic monitoring program, receives the results of
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1 the monitoring only in aggregate terms that do

2 not disclose the identity of specific members.

3 (c) PRESERVATION OF PROTECTIONS.—In the case of

4 information to which any of paragraphs (1) through (5)

5 of subsection (b) applies, such information may not be used

6 in violation of paragraph (1), (2), or (3) of subsection (a)

7 or treated or disclosed in a manner that violates section

8 206.

9 SEC. 205. TRAINING PROGRAMS.

10 (a) DISCRIMINATION BASED ON GENETIC INFORMA11 TION.—It shall be an unlawful employment practice for any

12 employer, labor organization, or joint labor-management

13 committee controlling apprenticeship or other training or

14 retraining, including on-the-job training programs—

15 (1) to discriminate against any individual be16 cause of genetic information with respect to the indi17 vidual in admission to, or employment in, any pro18 gram established to provide apprenticeship or other

19 training or retraining;

20 (2) to limit, segregate, or classify the applicants

21 for or participants in such apprenticeship or other

22 training or retraining, or fail or refuse to refer for

23 employment any individual, in any way that would

24 deprive or tend to deprive any individual of employ25 ment opportunities, or otherwise adversely affect the
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1 status of the individual as an employee, because of ge2 netic information with respect to the individual; or

3 (3) to cause or attempt to cause an employer to

4 discriminate against an applicant for or a partici5 pant in such apprenticeship or other training or re6 training in violation of this title.

7 (b) ACQUISITION OF GENETIC INFORMATION.—It shall

8 be an unlawful employment practice for an employer, labor

9 organization, or joint labor-management committee de10 scribed in subsection (a) to request, require, or purchase ge11 netic information with respect to an individual or a family

12 member of the individual except—

13 (1) where the employer, labor organization, or

14 joint labor-management committee inadvertently re15 quests or requires family medical history of the indi16 vidual or family member of the individual;

17 (2) where—

18 (A) health or genetic services are offered by

19 the employer, labor organization, or joint labor20 management committee, including such services

21 offered as part of a wellness program;

22 (B) the individual provides prior, knowing,

23 voluntary, and written authorization;

24 (C) only the individual (or family member

25 if the family member is receiving genetic serv-
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1 ices) and the licensed health care professional or

2 board certified genetic counselor involved in pro3 viding such services receive individually identifi4 able information concerning the results of such

5 services; and

6 (D) any individually identifiable genetic

7 information provided under subparagraph (C) in

8 connection with the services provided under sub9 paragraph (A) is only available for purposes of

10 such services and shall not be disclosed to the em11 ployer, labor organization, or joint labor-man12 agement committee except in aggregate terms

13 that do not disclose the identity of specific indi14 viduals;

15 (3) where the employer, labor organization, or

16 joint labor-management committee requests or re17 quires family medical history from the individual to

18 comply with the certification provisions of section 103

19 of the Family and Medical Leave Act of 1993 (29

20 U.S.C. 2613) or such requirements under State family

21 and medical leave laws;

22 (4) where the employer, labor organization, or

23 joint labor-management committee purchases docu24 ments that are commercially and publicly available

25 (including newspapers, magazines, periodicals, and
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1 books, but not including medical databases or court

2 records) that include family medical history;

3 (5) where the information involved is to be used

4 for genetic monitoring of the biological effects of toxic

5 substances in the workplace, but only if—

6 (A) the employer, labor organization, or

7 joint labor-management committee provides

8 written notice of the genetic monitoring to the

9 individual;

10 (B)(i) the individual provides prior, know11 ing, voluntary, and written authorization; or

12 (ii) the genetic monitoring is required by

13 Federal or State law;

14 (C) the individual is informed of individual

15 monitoring results;

16 (D) the monitoring is in compliance with—

17 (i) any Federal genetic monitoring reg18 ulations, including any such regulations

19 that may be promulgated by the Secretary

20 of Labor pursuant to the Occupational

21 Safety and Health Act of 1970 (29 U.S.C.

22 651 et seq.), the Federal Mine Safety and

23 Health Act of 1977 (30 U.S.C. 801 et seq.),

24 or the Atomic Energy Act of 1954 (42

25 U.S.C. 2011 et seq.); or
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1 (ii) State genetic monitoring regula2 tions, in the case of a State that is imple3 menting genetic monitoring regulations

4 under the authority of the Occupational

5 Safety and Health Act of 1970 (29 U.S.C.

6 651 et seq.); and

7 (E) the employer, labor organization, or

8 joint labor-management committee, excluding

9 any licensed health care professional or board

10 certified genetic counselor that is involved in the

11 genetic monitoring program, receives the results

12 of the monitoring only in aggregate terms that

13 do not disclose the identity of specific individ14 uals; or

15 (6) where the employer conducts DNA analysis

16 for law enforcement purposes as a forensic laboratory,

17 and such analysis is included in the Combined DNA

18 Index System pursuant to section 210304 of the Vio19 lent Crime Control and Law Enforcement Act of 1994

20 (42 U.S.C. 14132), and requests or requires genetic

21 information of such employer’s apprentices or train22 ees, but only to the extent that such genetic informa23 tion is used for analysis of DNA identification mark24 ers for quality control to detect sample contamina25 tion.
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1 (c) PRESERVATION OF PROTECTIONS.—In the case of

2 information to which any of paragraphs (1) through (6)

3 of subsection (b) applies, such information may not be used

4 in violation of paragraph (1), (2), or (3) of subsection (a)

5 or treated or disclosed in a manner that violates section

6 206.

7 SEC. 206. CONFIDENTIALITY OF GENETIC INFORMATION.

8 (a) TREATMENT OF INFORMATION AS PART OF CON9 FIDENTIAL MEDICAL RECORD.—If an employer, employ10 ment agency, labor organization, or joint labor-manage11 ment committee possesses genetic information about an em12 ployee or member, such information shall be maintained on

13 separate forms and in separate medical files and be treated

14 as a confidential medical record of the employee or member.

15 An employer, employment agency, labor organization, or

16 joint labor-management committee shall be considered to be

17 in compliance with the maintenance of information re18 quirements of this subsection with respect to genetic infor19 mation subject to this subsection that is maintained with

20 and treated as a confidential medical record under section

21 102(d)(3)(B) of the Americans With Disabilities Act (42

22 U.S.C. 12112(d)(3)(B)).

23 (b) LIMITATION ON DISCLOSURE.—An employer, em24 ployment agency, labor organization, or joint labor-man-
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1 agement committee shall not disclose genetic information

2 concerning an employee or member except—

3 (1) to the employee or member of a labor organi4 zation (or family member if the family member is re5 ceiving the genetic services) at the written request of

6 the employee or member of such organization;

7 (2) to an occupational or other health researcher

8 if the research is conducted in compliance with the

9 regulations and protections provided for under part

10 46 of title 45, Code of Federal Regulations;

11 (3) in response to an order of a court, except

12 that—

13 (A) the employer, employment agency, labor

14 organization, or joint labor-management com15 mittee may disclose only the genetic information

16 expressly authorized by such order; and

17 (B) if the court order was secured without

18 the knowledge of the employee or member to

19 whom the information refers, the employer, em20 ployment agency, labor organization, or joint

21 labor-management committee shall inform the

22 employee or member of the court order and any

23 genetic information that was disclosed pursuant

24 to such order;
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1 (4) to government officials who are investigating

2 compliance with this title if the information is rel3 evant to the investigation;

4 (5) to the extent that such disclosure is made in

5 connection with the employee’s compliance with the

6 certification provisions of section 103 of the Family

7 and Medical Leave Act of 1993 (29 U.S.C. 2613) or

8 such requirements under State family and medical

9 leave laws; or

10 (6) to a Federal, State, or local public health

11 agency only with regard to information that is de12 scribed in section 201(4)(A)(iii) and that concerns a

13 contagious disease that presents an imminent hazard

14 of death or life-threatening illness, and that the em15 ployee whose family member or family members is or

16 are the subject of a disclosure under this paragraph

17 is notified of such disclosure.

18 (c) RELATIONSHIP TO HIPAA REGULATIONS.—With

19 respect to the regulations promulgated by the Secretary of

20 Health and Human Services under part C of title XI of

21 the Social Security Act (42 U.S.C. 1320d et seq.) and sec22 tion 264 of the Health Insurance Portability and Account23 ability Act of 1996 (42 U.S.C. 1320d–2 note), this title does

24 not prohibit a covered entity under such regulations from

25 any use or disclosure of health information that is author-
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1 ized for the covered entity under such regulations. The pre2 vious sentence does not affect the authority of such Secretary

3 to modify such regulations.

4 SEC. 207. REMEDIES AND ENFORCEMENT.

5 (a) EMPLOYEES COVERED BY TITLE VII OF THE CIVIL

6 RIGHTS ACT OF 1964.—

7 (1) IN GENERAL.—The powers, procedures, and

8 remedies provided in sections 705, 706, 707, 709, 710,

9 and 711 of the Civil Rights Act of 1964 (42 U.S.C.

10 2000e–4 et seq.) to the Commission, the Attorney Gen11 eral, or any person, alleging a violation of title VII

12 of that Act (42 U.S.C. 2000e et seq.) shall be the pow13 ers, procedures, and remedies this title provides to the

14 Commission, the Attorney General, or any person, re15 spectively, alleging an unlawful employment practice

16 in violation of this title against an employee de17 scribed in section 201(2)(A)(i), except as provided in

18 paragraphs (2) and (3).

19 (2) COSTS AND FEES.—The powers, remedies,

20 and procedures provided in subsections (b) and (c) of

21 section 722 of the Revised Statutes of the United

22 States (42 U.S.C. 1988), shall be powers, remedies,

23 and procedures this title provides to the Commission,

24 the Attorney General, or any person, alleging such a

25 practice.
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1 (3) DAMAGES.—The powers, remedies, and pro2 cedures provided in section 1977A of the Revised

3 Statutes of the United States (42 U.S.C. 1981a), in4 cluding the limitations contained in subsection (b)(3)

5 of such section 1977A, shall be powers, remedies, and

6 procedures this title provides to the Commission, the

7 Attorney General, or any person, alleging such a

8 practice (not an employment practice specifically ex9 cluded from coverage under section 1977A(a)(1) of the

10 Revised Statutes of the United States).

11 (b) EMPLOYEES COVERED BY GOVERNMENT EM12 PLOYEE RIGHTS ACT OF 1991.—

13 (1) IN GENERAL.—The powers, remedies, and

14 procedures provided in sections 302 and 304 of the

15 Government Employee Rights Act of 1991 (42 U.S.C.

16 2000e–16b, 2000e–16c) to the Commission, or any

17 person, alleging a violation of section 302(a)(1) of

18 that Act (42 U.S.C. 2000e–16b(a)(1)) shall be the

19 powers, remedies, and procedures this title provides to

20 the Commission, or any person, respectively, alleging

21 an unlawful employment practice in violation of this

22 title against an employee described in section

23 201(2)(A)(ii), except as provided in paragraphs (2)

24 and (3).
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1 (2) COSTS AND FEES.—The powers, remedies,

2 and procedures provided in subsections (b) and (c) of

3 section 722 of the Revised Statutes of the United

4 States (42 U.S.C. 1988), shall be powers, remedies,

5 and procedures this title provides to the Commission,

6 or any person, alleging such a practice.

7 (3) DAMAGES.—The powers, remedies, and pro8 cedures provided in section 1977A of the Revised

9 Statutes of the United States (42 U.S.C. 1981a), in10 cluding the limitations contained in subsection (b)(3)

11 of such section 1977A, shall be powers, remedies, and

12 procedures this title provides to the Commission, or

13 any person, alleging such a practice (not an employ14 ment practice specifically excluded from coverage

15 under section 1977A(a)(1) of the Revised Statutes of

16 the United States).

17 (c) EMPLOYEES COVERED BY CONGRESSIONAL AC18 COUNTABILITY ACT OF 1995.—

19 (1) IN GENERAL.—The powers, remedies, and

20 procedures provided in the Congressional Account21 ability Act of 1995 (2 U.S.C. 1301 et seq.) to the

22 Board (as defined in section 101 of that Act (2 U.S.C.

23 1301)), or any person, alleging a violation of section

24 201(a)(1) of that Act (42 U.S.C. 1311(a)(1)) shall be

25 the powers, remedies, and procedures this title pro-
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1 vides to that Board, or any person, alleging an un2 lawful employment practice in violation of this title

3 against an employee described in section

4 201(2)(A)(iii), except as provided in paragraphs (2)

5 and (3).

6 (2) COSTS AND FEES.—The powers, remedies,

7 and procedures provided in subsections (b) and (c) of

8 section 722 of the Revised Statutes of the United

9 States (42 U.S.C. 1988), shall be powers, remedies,

10 and procedures this title provides to that Board, or

11 any person, alleging such a practice.

12 (3) DAMAGES.—The powers, remedies, and pro13 cedures provided in section 1977A of the Revised

14 Statutes of the United States (42 U.S.C. 1981a), in15 cluding the limitations contained in subsection (b)(3)

16 of such section 1977A, shall be powers, remedies, and

17 procedures this title provides to that Board, or any

18 person, alleging such a practice (not an employment

19 practice specifically excluded from coverage under sec20 tion 1977A(a)(1) of the Revised Statutes of the United

21 States).

22 (4) OTHER APPLICABLE PROVISIONS.—With re23 spect to a claim alleging a practice described in para24 graph (1), title III of the Congressional Account25 ability Act of 1995 (2 U.S.C. 1381 et seq.) shall apply
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1 in the same manner as such title applies with respect

2 to a claim alleging a violation of section 201(a)(1) of

3 such Act (2 U.S.C. 1311(a)(1)).

4 (d) EMPLOYEES COVERED BY CHAPTER 5 OF TITLE

5 3, UNITED STATES CODE.—

6 (1) IN GENERAL.—The powers, remedies, and

7 procedures provided in chapter 5 of title 3, United

8 States Code, to the President, the Commission, the

9 Merit Systems Protection Board, or any person, alleg10 ing a violation of section 411(a)(1) of that title, shall

11 be the powers, remedies, and procedures this title pro12 vides to the President, the Commission, such Board,

13 or any person, respectively, alleging an unlawful em14 ployment practice in violation of this title against an

15 employee described in section 201(2)(A)(iv), except as

16 provided in paragraphs (2) and (3).

17 (2) COSTS AND FEES.—The powers, remedies,

18 and procedures provided in subsections (b) and (c) of

19 section 722 of the Revised Statutes of the United

20 States (42 U.S.C. 1988), shall be powers, remedies,

21 and procedures this title provides to the President, the

22 Commission, such Board, or any person, alleging such

23 a practice.

24 (3) DAMAGES.—The powers, remedies, and pro25 cedures provided in section 1977A of the Revised
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1 Statutes of the United States (42 U.S.C. 1981a), in2 cluding the limitations contained in subsection (b)(3)

3 of such section 1977A, shall be powers, remedies, and

4 procedures this title provides to the President, the

5 Commission, such Board, or any person, alleging such

6 a practice (not an employment practice specifically

7 excluded from coverage under section 1977A(a)(1) of

8 the Revised Statutes of the United States).

9 (e) EMPLOYEES COVERED BY SECTION 717 OF THE

10 CIVIL RIGHTS ACT OF 1964.—

11 (1) IN GENERAL.—The powers, remedies, and

12 procedures provided in section 717 of the Civil Rights

13 Act of 1964 (42 U.S.C. 2000e–16) to the Commission,

14 the Attorney General, the Librarian of Congress, or

15 any person, alleging a violation of that section shall

16 be the powers, remedies, and procedures this title pro17 vides to the Commission, the Attorney General, the

18 Librarian of Congress, or any person, respectively, al19 leging an unlawful employment practice in violation

20 of this title against an employee or applicant de21 scribed in section 201(2)(A)(v), except as provided in

22 paragraphs (2) and (3).

23 (2) COSTS AND FEES.—The powers, remedies,

24 and procedures provided in subsections (b) and (c) of

25 section 722 of the Revised Statutes of the United
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1 States (42 U.S.C. 1988), shall be powers, remedies,

2 and procedures this title provides to the Commission,

3 the Attorney General, the Librarian of Congress, or

4 any person, alleging such a practice.

5 (3) DAMAGES.—The powers, remedies, and pro6 cedures provided in section 1977A of the Revised

7 Statutes of the United States (42 U.S.C. 1981a), in8 cluding the limitations contained in subsection (b)(3)

9 of such section 1977A, shall be powers, remedies, and

10 procedures this title provides to the Commission, the

11 Attorney General, the Librarian of Congress, or any

12 person, alleging such a practice (not an employment

13 practice specifically excluded from coverage under sec14 tion 1977A(a)(1) of the Revised Statutes of the United

15 States).

16 (f) PROHIBITION AGAINST RETALIATION.—No person

17 shall discriminate against any individual because such in18 dividual has opposed any act or practice made unlawful

19 by this title or because such individual made a charge, testi20 fied, assisted, or participated in any manner in an inves21 tigation, proceeding, or hearing under this title. The rem22 edies and procedures otherwise provided for under this sec23 tion shall be available to aggrieved individuals with respect

24 to violations of this subsection.
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1 (g) DEFINITION.—In this section, the term ‘‘Commis2 sion’’ means the Equal Employment Opportunity Commis3 sion.

4 SEC. 208. DISPARATE IMPACT.

5 (a) GENERAL RULE.—Notwithstanding any other pro6 vision of this Act, ‘‘disparate impact’’, as that term is used

7 in section 703(k) of the Civil Rights Act of 1964 (42 U.S.C.

8 2000e–2(k)), on the basis of genetic information does not

9 establish a cause of action under this Act.

10 (b) COMMISSION.—On the date that is 6 years after

11 the date of enactment of this Act, there shall be established

12 a commission, to be known as the Genetic Nondiscrimina13 tion Study Commission (referred to in this section as the

14 ‘‘Commission’’) to review the developing science of genetics

15 and to make recommendations to Congress regarding wheth16 er to provide a disparate impact cause of action under this

17 Act.

18 (c) MEMBERSHIP.—

19 (1) IN GENERAL.—The Commission shall be com20 posed of 8 members, of which—

21 (A) 1 member shall be appointed by the Ma22 jority Leader of the Senate;

23 (B) 1 member shall be appointed by the Mi24 nority Leader of the Senate;
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1 (C) 1 member shall be appointed by the

2 Chairman of the Committee on Health, Edu3 cation, Labor, and Pensions of the Senate;

4 (D) 1 member shall be appointed by the

5 ranking minority member of the Committee on

6 Health, Education, Labor, and Pensions of the

7 Senate;

8 (E) 1 member shall be appointed by the

9 Speaker of the House of Representatives;

10 (F) 1 member shall be appointed by the Mi11 nority Leader of the House of Representatives;

12 (G) 1 member shall be appointed by the

13 Chairman of the Committee on Education and

14 Labor of the House of Representatives; and

15 (H) 1 member shall be appointed by the

16 ranking minority member of the Committee on

17 Education and Labor of the House of Represent18 atives.

19 (2) COMPENSATION AND EXPENSES.—The mem20 bers of the Commission shall not receive compensation

21 for the performance of services for the Commission,

22 but shall be allowed travel expenses, including per

23 diem in lieu of subsistence, at rates authorized for

24 employees of agencies under subchapter I of chapter

25 57 of title 5, United States Code, while away from
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1 their homes or regular places of business in the per2 formance of services for the Commission.

3 (d) ADMINISTRATIVE PROVISIONS.—

4 (1) LOCATION.—The Commission shall be located

5 in a facility maintained by the Equal Employment

6 Opportunity Commission.

7 (2) DETAIL OF GOVERNMENT EMPLOYEES.—Any

8 Federal Government employee may be detailed to the

9 Commission without reimbursement, and such detail

10 shall be without interruption or loss of civil service

11 status or privilege.

12 (3) INFORMATION FROM FEDERAL AGENCIES.—

13 The Commission may secure directly from any Fed14 eral department or agency such information as the

15 Commission considers necessary to carry out the pro16 visions of this section. Upon request of the Commis17 sion, the head of such department or agency shall fur18 nish such information to the Commission.

19 (4) HEARINGS.—The Commission may hold such

20 hearings, sit and act at such times and places, take

21 such testimony, and receive such evidence as the Com22 mission considers advisable to carry out the objectives

23 of this section, except that, to the extent possible, the

24 Commission shall use existing data and research.
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1 (5) POSTAL SERVICES.—The Commission may

2 use the United States mails in the same manner and

3 under the same conditions as other departments and

4 agencies of the Federal Government.

5 (e) REPORT.—Not later than 1 year after all of the

6 members are appointed to the Commission under subsection

7 (c)(1), the Commission shall submit to Congress a report

8 that summarizes the findings of the Commission and makes

9 such recommendations for legislation as are consistent with

10 this Act.

11 (f) AUTHORIZATION OF APPROPRIATIONS.—There are

12 authorized to be appropriated to the Equal Employment

13 Opportunity Commission such sums as may be necessary

14 to carry out this section.

15 SEC. 209. CONSTRUCTION.

16 (a) IN GENERAL.—Nothing in this title shall be con17 strued to—

18 (1) limit the rights or protections of an indi19 vidual under any other Federal or State statute that

20 provides equal or greater protection to an individual

21 than the rights or protections provided for under this

22 title, including the protections of an individual under

23 the Americans with Disabilities Act of 1990 (42

24 U.S.C. 12101 et seq.) (including coverage afforded to

25 individuals under section 102 of such Act (42 U.S.C.
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1 12112)), or under the Rehabilitation Act of 1973 (29

2 U.S.C. 701 et seq.);

3 (2)(A) limit the rights or protections of an indi4 vidual to bring an action under this title against an

5 employer, employment agency, labor organization, or

6 joint labor-management committee for a violation of

7 this title; or

8 (B) provide for enforcement of, or penalties for

9 violation of, any requirement or prohibition applica10 ble to any employer, employment agency, labor orga11 nization, or joint labor-management committee sub12 ject to enforcement for a violation under—

13 (i) the amendments made by title I of this

14 Act;

15 (ii)(I) subsection (a) of section 701 of the

16 Employee Retirement Income Security Act of

17 1974 as such section applies with respect to ge18 netic information pursuant to subsection

19 (b)(1)(B) of such section;

20 (II) section 702(a)(1)(F) of such Act; or

21 (III) section 702(b)(1) of such Act as such

22 section applies with respect to genetic informa23 tion as a health status-related factor;

24 (iii)(I) subsection (a) of section 2701 of the

25 Public Health Service Act as such section applies
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1 with respect to genetic information pursuant to

2 subsection (b)(1)(B) of such section;

3 (II) section 2702(a)(1)(F) of such Act; or

4 (III) section 2702(b)(1) of such Act as such

5 section applies with respect to genetic informa6 tion as a health status-related factor; or

7 (iv)(I) subsection (a) of section 9801 of the

8 Internal Revenue Code of 1986 as such section

9 applies with respect to genetic information pur10 suant to subsection (b)(1)(B) of such section;

11 (II) section 9802(a)(1)(F) of such Act; or

12 (III) section 9802(b)(1) of such Act as such

13 section applies with respect to genetic informa14 tion as a health status-related factor;

15 (3) apply to the Armed Forces Repository of

16 Specimen Samples for the Identification of Remains;

17 (4) limit or expand the protections, rights, or ob18 ligations of employees or employers under applicable

19 workers’ compensation laws;

20 (5) limit the authority of a Federal department

21 or agency to conduct or sponsor occupational or other

22 health research that is conducted in compliance with

23 the regulations contained in part 46 of title 45, Code

24 of Federal Regulations (or any corresponding or simi25 lar regulation or rule);
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1 (6) limit the statutory or regulatory authority of

2 the Occupational Safety and Health Administration

3 or the Mine Safety and Health Administration to

4 promulgate or enforce workplace safety and health

5 laws and regulations; or

6 (7) require any specific benefit for an employee

7 or member or a family member of an employee or

8 member under any group health plan or health insur9 ance issuer offering group health insurance coverage

10 in connection with a group health plan.

11 (b) GENETIC INFORMATION OF A FETUS OR EM12 BRYO.—Any reference in this title to genetic information

13 concerning an individual or family member of an indi14 vidual shall—

15 (1) with respect to such an individual or family

16 member of an individual who is a pregnant woman,

17 include genetic information of any fetus carried by

18 such pregnant woman; and

19 (2) with respect to an individual or family mem20 ber utilizing an assisted reproductive technology, in21 clude genetic information of any embryo legally held

22 by the individual or family member.

23 (c) RELATION TO AUTHORITIES UNDER TITLE I.—

24 With respect to a group health plan, or a health insurance

25 issuer offering group health insurance coverage in connec-
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1 tion with a group health plan, this title does not prohibit

2 any activity of such plan or issuer that is authorized for

3 the plan or issuer under any provision of law referred to

4 in clauses (i) through (iv) of subsection (a)(2)(B).

5 SEC. 210. MEDICAL INFORMATION THAT IS NOT GENETIC

6 INFORMATION.

7 An employer, employment agency, labor organization,

8 or joint labor-management committee shall not be consid9 ered to be in violation of this title based on the use, acquisi10 tion, or disclosure of medical information that is not genetic

11 information about a manifested disease, disorder, or patho12 logical condition of an employee or member, including a

13 manifested disease, disorder, or pathological condition that

14 has or may have a genetic basis.

15 SEC. 211. REGULATIONS.

16 Not later than 1 year after the date of enactment of

17 this title, the Commission shall issue final regulations to

18 carry out this title.

19 SEC. 212. AUTHORIZATION OF APPROPRIATIONS.

20 There are authorized to be appropriated such sums as

21 may be necessary to carry out this title (except for section

22 208).

23 SEC. 213. EFFECTIVE DATE.

24 This title takes effect on the date that is 18 months

25 after the date of enactment of this Act.
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1 TITLE III—MISCELLANEOUS

2 PROVISIONS

3 SEC. 301. SEVERABILITY.

4 If any provision of this Act, an amendment made by

5 this Act, or the application of such provision or amendment

6 to any person or circumstance is held to be unconstitu7 tional, the remainder of this Act, the amendments made by

8 this Act, and the application of such provisions to any per9 son or circumstance shall not be affected thereby.

10 SEC. 302. CHILD LABOR PROTECTIONS.

11 (a) IN GENERAL.—Section 16(e) of the Fair Labor

12 Standards Act of 1938 (29 U.S.C. 216(e)) is amended to

13 read as follows:

14 ‘‘(e)(1)(A) Any person who violates the provisions of

15 sections 12 or 13(c), relating to child labor, or any regula16 tion issued pursuant to such sections, shall be subject to a

17 civil penalty not to exceed—

18 ‘‘(i) $11,000 for each employee who

19 was the subject of such a violation; or

20 ‘‘(ii) $50,000 with regard to each such

21 violation that causes the death or serious

22 injury of any employee under the age of 18

23 years, which penalty may be doubled where

24 the violation is a repeated or willful viola25 tion.
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1 ‘‘(B) For purposes of subparagraph (A), the term ‘seri2 ous injury’ means—

3 ‘‘(i) permanent loss or substantial impairment of

4 one of the senses (sight, hearing, taste, smell, tactile

5 sensation);

6 ‘‘(ii) permanent loss or substantial impairment

7 of the function of a bodily member, organ, or mental

8 faculty, including the loss of all or part of an arm,

9 leg, foot, hand or other body part; or

10 ‘‘(iii) permanent paralysis or substantial im11 pairment that causes loss of movement or mobility of

12 an arm, leg, foot, hand or other body part.

13 ‘‘(2) Any person who repeatedly or willfully violates

14 section 6 or 7, relating to wages, shall be subject to a civil

15 penalty not to exceed $1,100 for each such violation.

16 ‘‘(3) In determining the amount of any penalty under

17 this subsection, the appropriateness of such penalty to the

18 size of the business of the person charged and the gravity

19 of the violation shall be considered. The amount of any pen20 alty under this subsection, when finally determined, may

21 be—

22 ‘‘(A) deducted from any sums owing by the

23 United States to the person charged;

24 ‘‘(B) recovered in a civil action brought by the

25 Secretary in any court of competent jurisdiction, in
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1 which litigation the Secretary shall be represented by

2 the Solicitor of Labor; or

3 ‘‘(C) ordered by the court, in an action brought

4 for a violation of section 15(a)(4) or a repeated or

5 willful violation of section 15(a)(2), to be paid to the

6 Secretary.

7 ‘‘(4) Any administrative determination by the Sec8 retary of the amount of any penalty under this subsection

9 shall be final, unless within 15 days after receipt of notice

10 thereof by certified mail the person charged with the viola11 tion takes exception to the determination that the violations

12 for which the penalty is imposed occurred, in which event

13 final determination of the penalty shall be made in an ad14 ministrative proceeding after opportunity for hearing in

15 accordance with section 554 of title 5, United States Code,

16 and regulations to be promulgated by the Secretary.

17 ‘‘(5) Except for civil penalties collected for violations

18 of section 12, sums collected as penalties pursuant to this

19 section shall be applied toward reimbursement of the costs

20 of determining the violations and assessing and collecting

21 such penalties, in accordance with the provision of section

22 2 of the Act entitled ‘An Act to authorize the Department

23 of Labor to make special statistical studies upon payment

24 of the cost thereof and for other purposes’ (29 U.S.C. 9a).
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1 Civil penalties collected for violations of section 12 shall

2 be deposited in the general fund of the Treasury.’’.

3 (b) EFFECTIVE DATE.—The amendments made by this

4 section shall take effect on the date of the enactment of this

5 Act.

Attest:

Secretary.
110TH CONGRESS

2D SESSION H.R. 493

AMENDMENT