II

104TH CONGRESS

2D SESSION S. 1694

To prohibit insurance providers from denying or canceling health insurance

coverage, or varying the premiums, terms, or conditions for health insurance coverage on the basis of genetic information or a request for

genetic services, and for other purposes.

IN THE SENATE OF THE UNITED STATES

APRIL 23, 1996

Ms. SNOWE introduced the following bill; which was read twice and referred

to the Committee on Labor and Human Resources

A BILL

To prohibit insurance providers from denying or canceling

health insurance coverage, or varying the premiums,

terms, or conditions for health insurance coverage on

the basis of genetic information or a request for genetic

services, 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 Information

5 Nondiscrimination in Health Insurance 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.—An insurance provider may not

5 deny or cancel health insurance coverage, or vary the pre6 miums, terms, or conditions for health insurance coverage,

7 for an individual or a family member of an individual—

8 (1) on the basis of genetic information; or

9 (2) on the basis that the individual or family

10 member of an individual has requested or received

11 genetic services.

12 (b) LIMITATION ON COLLECTION AND DISCLOSURE

13 OF INFORMATION.—

14 (1) IN GENERAL.—An insurance provider may

15 not request or require an individual to whom the

16 provider provides health insurance coverage, or an

17 individual who desires the provider to provide health

18 insurance coverage, to disclose to the provider ge19 netic information about the individual or family

20 member of the individual.

21 (2) REQUIREMENT OF PRIOR AUTHORIZA22 TION.—An insurance provider may not disclose ge23 netic information about an individual without the

24 prior written authorization of the individual or legal

25 representative of the individual. Such authorization

26 is required for each disclosure and shall include an
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1 identification of the person to whom the disclosure

2 would be made.

3 (c) ENFORCEMENT.—

4 (1) PLANS OTHER THAN EMPLOYEE HEALTH

5 BENEFIT PLANS.—The requirements established

6 under subsections (a) and (b) shall be enforced by

7 the State insurance commissioner for the State in8 volved or the official or officials designated by the

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

10 such requirements as they relate to employee health

11 benefit plans.

12 (2) EMPLOYEE HEALTH BENEFIT PLANS.—

13 With respect to employee health benefit plans, the

14 Secretary shall enforce the requirements established

15 under subsections (a) and (b) in the same manner

16 as provided for under sections 502, 504, 506, and

17 510 of the Employee Retirement Income Security

18 Act of 1974 (29 U.S.C. 1132, 1134, 1136, and

19 1140).

20 (3) PRIVATE RIGHT OF ACTION.—A person may

21 bring a civil action—

22 (A) to enjoin any act or practice which vio23 lates subsection (a) or (b),
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1 (B) to obtain other appropriate equitable

2 relief (i) to redress such violations, or (ii) to en3 force any such subsections, or

4 (C) to obtain other legal relief, including

5 monetary damages.

6 (4) JURISDICTION.—State courts of competent

7 jurisdiction and district courts of the United States

8 have concurrent jurisdiction of actions under this

9 subsection. The district courts of the United States

10 shall have jurisdiction, without respect to the

11 amount in controversy or the citizenship of the par12 ties, to grant the relief provided for in paragraph (3)

13 in any action.

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

15 the venue provisions of section 1391 of title 28,

16 United States Code, shall apply.

17 (6) REGULATIONS.—The Secretary may pro18 mulgate such regulations as may be necessary or ap19 propriate to carry out this section.

20 (d) APPLICABILITY.—

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

22 establish or enforce requirements for insurance pro23 viders or health insurance coverage with respect to

24 the subject matter of this section, but only if such
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1 requirements are more restrictive than the require2 ments established under subsections (a) and (b).

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

4 section shall be construed to affect or modify the

5 provisions of section 514 of the Employee Retire6 ment Income Security Act of 1974 (29 U.S.C.

7 1144).

8 (3) CONTINUATION.—Nothing in this section

9 shall be construed as requiring a group health plan

10 or an employee health benefit plan to provide bene11 fits to a particular participant or beneficiary.

12 (e) DEFINITIONS.—For purposes of this Act:

13 (1) EMPLOYEE HEALTH BENEFIT PLAN.—The

14 term ‘‘employee health benefit plan’’ means any em15 ployee welfare benefit plan, governmental plan, or

16 church plan (as defined under paragraphs (1), (32),

17 and (33) of section 3 of the Employee Retirement

18 Income Security Act of 1974 (29 U.S.C. 1002)) that

19 provides or pays for health insurance coverage (such

20 as provider and hospital benefits) whether—

21 (A) directly;

22 (B) through a group health plan; or

23 (C) otherwise.
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1 (2) FAMILY MEMBER.—The term ‘‘family mem2 ber’’ means, with respect to an individual, another

3 individual related by blood to that individual.

4 (3) GENETIC INFORMATION.—The term ‘‘ge5 netic information’’ means information about genes,

6 gene products, or inherited characteristics.

7 (4) GENETIC SERVICES.—The term ‘‘genetic

8 services’’ means health services to obtain, assess,

9 and interpret genetic information for diagnostic and

10 therapeutic purposes, and for genetic education and

11 counselling.

12 (5) GROUP HEALTH PLAN.—The term ‘‘group

13 health plan’’ has the meaning given such term in

14 section 607 of the Employee Retirement Income Se15 curity Act of 1974 (29 U.S.C. 1167), and includes

16 a multiple employer welfare arrangement (as defined

17 in section 3(40) of such Act) that provides health in18 surance coverage.

19 (6) HEALTH INSURANCE COVERAGE.—The term

20 ‘‘health insurance coverage’’ means a contractual ar21 rangement for the provision of a payment for health

22 care, including—

23 (A) a group health plan; and

24 (B) any other health insurance arrange25 ment, including any arrangement consisting of
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1 a hospital or medical expense incurred policy or

2 certificate, hospital or medical service plan con3 tract, or health maintenance organization sub4 scriber contract.

5 (7) INDIVIDUAL HEALTH PLAN.—The term ‘‘in6 dividual health plan’’ means any health insurance

7 coverage offered to individuals that is not a group

8 health plan.

9 (8) INSURANCE PROVIDER.—The term ‘‘insur10 ance provider’’ means an insurer or other entity pro11 viding health insurance coverage.

12 (9) PERSON.—The term ‘‘person’’ includes cor13 porations, companies, associations, firms, partner14 ships, societies, and joint stock companies, as well as

15 individuals.

16 (10) SECRETARY.—The term ‘‘Secretary’’

17 means the Secretary of Labor.

18 (11) STATE.—The term ‘‘State’’ means any of

19 the 50 States, the District of Columbia, Puerto Rico,

20 the Northern Mariana Islands, the Virgin Islands,

21 American Samoa, and Guam.

22 (f) TECHNICAL AMENDMENT.—Section 508 of the

23 Employee Retirement Income Security Act of 1974 (29

24 U.S.C. 1138) is amended by inserting ‘‘and under the Ge-
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1 netic Insurance Nondiscrimination in Health Insurance

2 Act of 1995’’ before the period.

3 (g) EFFECTIVE DATE.—This section shall apply to

4 health insurance coverage offered or renewed on or after

5 the end of the 90-day period beginning on the date of the

6 enactment of this Act.

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