II

104TH CONGRESS

2D SESSION S. 1600

To establish limitations on health plans with respect to genetic information,

and for other purposes.

IN THE SENATE OF THE UNITED STATES

MARCH 7 (legislative day, MARCH 6), 1996

Mrs. FEINSTEIN (for herself and Mr. MACK) introduced the following bill;

which was read twice and referred to the Committee on Labor and

Human Resources

A BILL

To establish limitations on health plans with respect to

genetic information, and for other purposes.

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 Fairness Act

5 of 1996’’.

6 SEC. 2. DEFINITIONS.

7 As used in this Act:

8 (1) FAMILY MEMBER.—The term ‘‘family mem9 ber’’ means, with respect to an individual, another
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1 individual related by blood to that individual or a

2 spouse or adopted child of the individual.

3 (2) GENETIC INFORMATION.—The term ‘‘ge4 netic information’’ means the information about

5 genes, gene products or inherited characteristics that

6 may be derived from an individual or a family mem7 ber.

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

9 services’’ means health services provided to obtain,

10 assess, and interpret genetic information for diag11 nostic and therapeutic purposes, and for genetic

12 education and counseling.

13 (4) GENETIC TEST.—The term ‘‘genetic test’’

14 means a procedure that is generally accepted in the

15 scientific and medical communities and that is per16 formed for the purposes of identifying the presence,

17 absence, or alternation of any gene or chromosome.

18 (5) HEALTH PLAN.—The term ‘‘health plan’’

19 means—

20 (A) a group health plan (as such term is

21 defined in section 607 of the Employee Retire22 ment Income Security Act of 1974 (29 U.S.C.

23 1167)), and a multiple employer welfare ar24 rangement (as defined in section 3(40) of such

25 Act) that provides health insurance coverage; or
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1 (B) any contractual arrangement for the

2 provision of a payment for health care, includ3 ing any health insurance arrangement or any

4 arrangement consisting of a hospital or medical

5 expense incurred policy or certificate, hospital

6 or medical service plan contract, or health

7 maintenance organization subscriber contract.

8 (6) INSURER.—The term ‘‘insurer’’ means—

9 (A) an insurance company, health care

10 service contractor, fraternal benefit organiza11 tion, insurance agent, third party adminis12 trator, insurance support organization or other

13 person subject to regulation under State health

14 insurance laws;

15 (B) a managed care organization; or

16 (C) an employee welfare benefit plan regu17 lated under the Employee Retirement Income

18 Security Act of 1974 (29 U.S.C. 1001 et seq.).

19 (7) SECRETARY.—The term ‘‘Secretary’’ means

20 the Secretary of Health and Human Services.

21 SEC. 3. PROHIBITIONS.

22 (a) GENETIC INFORMATION.—An insurer offering a

23 health plan may not—

24 (1) terminate, restrict, limit, or otherwise apply

25 conditions to coverage of an individual or family
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1 member under the plan, or restrict the sale of the

2 plan to an individual or family member;

3 (2) cancel or refuse to renew the coverage of an

4 individual or family member under the plan;

5 (3) deny coverage or exclude an individual or

6 family member from coverage under the plan;

7 (4) impose a rider that excludes coverage for

8 certain benefits and services under the plan;

9 (5) establish differentials in premium rates or

10 cost sharing for coverage under the plan; or

11 (6) otherwise discriminate against an individual

12 or family member in the provision of health care;

13 on the basis of any genetic information concerning an indi14 vidual or family member or on the basis of an individual’s

15 or family member’s request for or receipt of genetic serv16 ices.

17 (b) GENETIC TESTS.—An insurer offering a health

18 plan may not require an applicant for coverage under the

19 plan, or an individual or family member who is presently

20 covered under the plan, to be the subject of a genetic test

21 or to be subjected to questions relating to genetic informa22 tion.

23 (c) NOTICE OF RIGHTS.—An insurer offering a

24 health plan shall, in the enrollment information provided

25 by the insurer concerning such plan, provide an enrollee
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1 with a written statement disclosing the rights of the en2 rollee under this Act. Such statement shall be in a form

3 and manner that is noticeable to and understandable by

4 an average enrollee.

5 (d) ENFORCEMENT.—

6 (1) PLANS OTHER THAN EMPLOYEE WELFARE

7 BENEFIT PLANS.—The requirements established

8 under subsections (a), (b), and (c) shall be enforced

9 by the State insurance commissioner for the State

10 involved or the official or officials designated by the

11 State, except that in no case shall a State enforce

12 such requirements as they relate to employee welfare

13 benefit plans.

14 (2) EMPLOYEE WELFARE BENEFIT PLANS.—

15 With respect to employee welfare benefit plans, the

16 Secretary shall enforce the requirements established

17 under subsections (a), (b), and (c) in the same man18 ner as provided for under sections 502, 504, 506,

19 and 510 of the Employee Retirement Income Secu20 rity Act of 1974 (29 U.S.C. 1132, 1134, 1136, and

21 1140).

22 (3) PRIVATE RIGHT OF ACTION.—A person

23 may, after that person has exhausted all available

24 administrative remedies, bring a civil action—
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1 (A) to enjoin any act or practice which vio2 lates subsection (a), (b), or (c);

3 (B) to obtain other appropriate equitable

4 relief—

5 (i) to redress such violations; or

6 (ii) to require the Secretary of Health

7 and Human Services to enforce any such

8 subsections, or

9 (C) to obtain other legal relief, including

10 monetary damages.

11 (4) JURISDICTION.—State courts of competent

12 jurisdiction and district courts of the United States

13 have concurrent jurisdiction of actions under this

14 subsection. The district courts of the United States

15 shall have jurisdiction, without respect to the

16 amount in controversy or the citizenship of the par17 ties, to grant the relief provided for in paragraph (3)

18 in any action.

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

20 the venue provisions of section 1391 of title 28,

21 United States Code, shall apply.

22 (6) REGULATIONS.—The Secretary may pro23 mulgate such regulations as may be necessary or ap24 propriate to carry out this section.
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1 SEC. 4. EFFECTIVE DATE.

2 This Act shall apply to any health plan offered or

3 renewed on or after the end of the 90-day period beginning

4 on the date of the enactment of this Act.

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