I

104TH CONGRESS

2D SESSION H. R. 4008

To prohibit health insurers and group health plans from discriminating

against individuals on the basis of genetic information.

IN THE HOUSE OF REPRESENTATIVES

AUGUST 2, 1996

Mr. SOLOMON introduced the following bill; which was referred to the Committee on Commerce, and in addition to the Committee on Economic and

Educational Opportunities, for a period to be subsequently determined by

the Speaker, in each case for consideration of such provisions as fall within the jurisdiction of the committee concerned

A BILL

To prohibit health insurers and group health plans from

discriminating against individuals on the basis of genetic

information.

1 Be it enacted by the Senate and House of Representa2 tives of the United States of America in Congress assembled,

3 SECTION 1. SHORT TITLE.

4 This Act may be cited as the ‘‘Genetic Information

5 Health Insurance Nondiscrimination Act of 1996’’.
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1 SEC. 2. PROHIBITION OF HEALTH INSURANCE DISCRIMINA2 TION ON THE BASIS OF GENETIC INFORMA3 TION.

4 (a) IN GENERAL.—

5 (1) APPLICATION TO INSURERS.—An insurer

6 may not deny, cancel, or refuse to renew health in7 surance coverage, may not vary the premiums,

8 terms, or conditions for health insurance coverage,

9 and may not otherwise discriminate with respect to

10 an individual with respect to health insurance cov11 erage—

12 (A) on the basis of genetic information, or

13 (B) on the basis of the request for, or re14 ceipt of, genetic information or a genetic test.

15 (2) APPLICATION TO GROUP HEALTH PLANS.—

16 A group health plan may not establish rules relating

17 to who may be a participant or beneficiary with re18 spect to the plan, may not vary the premiums,

19 terms, or conditions for benefits under the plan, and

20 otherwise may not otherwise discriminate with re21 spect to a participant or beneficiary under the

22 plan—

23 (A) on the basis of genetic information, or

24 (B) on the basis of the request for, or re25 ceipt of, genetic information or a genetic test.
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1 (b) LIMITATION ON COLLECTION AND DISCLOSURE

2 OF GENETIC INFORMATION.—

3 (1) LIMITATION ON COLLECTION.—An insurer

4 may not request or require an individual to whom

5 the insurer provides health insurance coverage (or

6 an individual who desires the insurer to provide

7 health insurance coverage), and a group health plan

8 may not request or require a participant or bene9 ficiary under the plan (or an individual who desires

10 to become such a participant or beneficiary), to dis11 close any genetic information or to obtain any ge12 netic test.

13 (2) RESTRICTION ON DISCLOSURE.—Subject to

14 paragraph (3), an insurer or group health plan may

15 not disclose genetic information about an individual

16 (regardless of how the information was obtained)

17 without a prior written authorization of the individ18 ual (or legal representative of the individual) that in19 cludes—

20 (A) a description of the information being

21 disclosed,

22 (B) the name of the individual or person to

23 whom the disclosure is being made, and

24 (C) the purpose of the disclosure.

25 Such authorization is required for each disclosure.
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1 (3) EXCEPTIONS TO DISCLOSURE RESTRIC2 TION.—Genetic information concerning an individual

3 may be disclosed by an insurer or group health plan

4 if such disclosure—

5 (A) is authorized under criminal laws re6 lating to the identification of individuals, or is

7 authorized under Federal or State law and is

8 necessary for the purpose of a criminal or death

9 investigation, a criminal or juvenile proceeding,

10 an inquest, or a child fatality review by a multi11 disciplinary child abuse team;

12 (B) is required under the specific order of

13 a court;

14 (C) is authorized under law for the pur15 pose of establishing paternity;

16 (D) is for the purpose of furnishing genetic

17 information relating to a decedent to the blood

18 relatives of the decedent for the purpose of

19 medical diagnosis; or

20 (E) is for the purpose of identifying a

21 body.

22 (c) DISCLOSURE OF RIGHTS.—Each insurer and

23 group health plan shall provide for disclosure of the rights

24 under this section in such manner as the Secretary may

25 require.
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1 (d) ENFORCEMENT.—

2 (1) INSURERS.—

3 (A) ENFORCEMENT BY STATE INSURANCE

4 COMMISSIONER.—

5 (i) IN GENERAL.—The requirements

6 established under subsections (a), (b), and

7 (c) insofar as they apply to insurers shall

8 be enforced by the State insurance com9 missioner for the State involved or the offi10 cial or officials designated by the State.

11 (ii) ENFORCEMENT PLAN.—Each

12 State shall require that an insurer offering

13 or renewing health insurance coverage in

14 such State meet such requirements pursu15 ant to an enforcement plan filed by the

16 State with the Secretary.

17 (B) ENFORCEMENT BY SECRETARY.—In

18 the case of the failure of a State to file such a

19 plan or substantially enforce the plan, the Sec20 retary shall implement an enforcement plan in

21 such State. Under the Secretary’s enforcement

22 plan, each insurer operating in such State that

23 violates a requirement of subsection (a), (b), or

24 (c) shall be subject to civil enforcement under

25 sections 502, 504, 506, and 510 of the Em-
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1 ployee Retirement Income Security Act of 1974.

2 For purposes of applying the previous sentence,

3 any reference in the sections referred to in such

4 sentence to the Secretary of Labor is deemed a

5 reference to the Secretary of Health and

6 Human Services.

7 (2) GROUP HEALTH PLANS.—With respect to

8 group health plans, the Secretary of Labor shall en9 force the requirements established under subsections

10 (a), (b), and (c) in the same manner as provided for

11 under sections 502, 504, 506, and 510 of the Em12 ployee Retirement Income Security Act of 1974.

13 (2) PRIVATE RIGHT OF ACTION.—A person may

14 bring a civil action—

15 (A) to enjoin any act or practice which vio16 lates subsection (a) or (b),

17 (B) to obtain other appropriate equitable

18 relief (i) to redress such violations, or (ii) to en19 force any such subsections, or

20 (C) to obtain other legal relief, including

21 monetary damages.

22 (3) JURISDICTION.—State courts of competent

23 jurisdiction and district courts of the United States

24 have concurrent jurisdiction of actions under this

25 subsection. The district courts of the United States
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1 shall have jurisdiction, without respect to the

2 amount in controversy or the citizenship of the par3 ties, to grant the relief provided for in paragraph (2)

4 in any action.

5 (4) VENUE.—For purposes of this subsection

6 the venue provisions of section 1391 of title 28,

7 United States Code, shall apply.

8 (5) REGULATIONS.—The Secretary and the

9 Secretary of Labor (in consultation with the Sec10 retary in relation to the application of this section

11 with respect to group health plans) may promulgate

12 such regulations as may be necessary or appropriate

13 to carry out this section.

14 (e) APPLICABILITY.—

15 (1) PREEMPTION OF STATE LAW.—A State may

16 establish or enforce requirements for insurers or

17 health insurance coverage with respect to the subject

18 matter of this section, but only if such requirements

19 are not less restrictive than the requirements estab20 lished under subsections (a), (b), and (c).

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

22 section shall be construed to affect or modify the

23 provisions of section 514 of the Employee Retire24 ment Income Security Act of 1974.
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1 (3) CONTINUATION.—Nothing in this section

2 shall be construed as requiring a group health plan

3 to provide benefits to a particular participant or

4 beneficiary.

5 (f) DEFINITIONS.—For purposes of this Act:

6 (1) GENETIC INFORMATION.—The term ‘‘ge7 netic information’’ means the information about

8 genes, gene products, or inherited characteristics

9 that may derive from an individual or a blood-rel10 ative of the individual.

11 (2) GENETIC TEST.—The term ‘‘genetic test’’

12 means a test for determining the presence or ab13 sence of genetic characteristics in an individual.

14 (3) GROUP HEALTH PLAN.—The term ‘‘group

15 health plan means any employee welfare benefit

16 plan, governmental plan, or church plan (as defined

17 under paragraphs (1), (32), and (33) of section 3 of

18 the Employee Retirement Income Security Act of

19 1974) that provides or pays for medical benefits

20 whether directly, through insurance, or otherwise.

21 (4) HEALTH INSURANCE COVERAGE.—The term

22 ‘‘health insurance coverage’’ means a contractual ar23 rangement for the provision of, or payment for,

24 health care, including any arrangement consisting of

25 a hospital or medical expense incurred policy or cer-
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1 tificate, hospital or medical service plan contract, or

2 health maintenance organization subscriber contract

3 and including such an arrangement in connection

4 with a group health plan.

5 (5) INSURER.—The term ‘‘insurer’’ means an

6 insurance company, insurance service, or insurance

7 organization (including a health maintenance organi8 zation) which is licensed to engage in the business

9 of insurance in a State and which is subject to State

10 law which regulates insurance (within the meaning

11 of section 514(b)(2)) and which provides health in12 surance coverage. Such term does not include a

13 group health plan.

14 (6) PARTICIPANT; BENEFICIARY.—The terms

15 ‘‘participant’’ and ‘‘beneficiary’’ have the meanings

16 given such terms in paragraphs (7) and (8), respec17 tively, of section 3 of the Employee Retirement In18 come Security Act of 1974.

19 (7) SECRETARY.—Except as specifically pro20 vided, the term ‘‘Secretary’’ means the Secretary of

21 Health and Human Services.

22 (8) STATE.—The term ‘‘State’’ includes the

23 District of Columbia, Puerto Rico, the Northern

24 Mariana Islands, the Virgin Islands, American

25 Samoa, and Guam.
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1 (g) AUTHORIZATION OF FUNDING UNDER ERISA.—

2 Section 508 of the Employee Retirement Income Security

3 Act of 1974 (29 U.S.C. 1138) is amended by inserting

4 ‘‘and under the Genetic Information Health Insurance

5 Nondiscrimination Act of 1996’’ before the period.

6 (h) EFFECTIVE DATE.—This section shall apply to

7 health insurance coverage offered or renewed and to group

8 health plans after the end of the 90-day period beginning

9 on the date of the enactment of this Act.

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