I

104TH CONGRESS

1ST SESSION H. R. 2690

To establish limitation with respect to the disclosure and use of genetic

information, and for other purposes.

IN THE HOUSE OF REPRESENTATIVES

NOVEMBER 29, 1995

Mr. STEARNS introduced the following bill; which was referred to the Committee on Commerce, and in addition to the Committees on Government Reform and Oversight and 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 establish limitation with respect to the disclosure and

use of 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 Privacy and

5 Nondiscrimination Act of 1995’’.

6 SEC. 2. FINDINGS AND PURPOSES.

7 (a) FINDINGS.—Congress finds the following:
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1 (1) The DNA molecule contains information

2 about an individual’s probable medical future.

3 (2) Genetic information is uniquely private and

4 personal information that should not be disclosed

5 without the authorization of the individual.

6 (3) The improper disclosure of genetic informa7 tion can lead to significant harm to the individual,

8 including stigmatization and discrimination in areas

9 such as employment, education, health care and in10 surance.

11 (4) An analysis of an individual’s DNA provides

12 information not only about an individual, but also

13 about the individual’s parents, siblings and children.

14 (5) Current legal protections for genetic infor15 mation, tissue samples and DNA samples are inad16 equate to protect genetic privacy, and require fur17 ther attention.

18 (6) Laws for the collection, storage and use of

19 identifiable DNA samples and private genetic infor20 mation obtained from those samples are needed both

21 to protect individual privacy and to permit legitimate

22 genetic research.

23 (b) PURPOSES.—It is the purpose of this Act to—

24 (1) define the rights of individuals whose ge25 netic information is disclosed;
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1 (2) define the circumstances under which an in2 dividual’s genetic information may be disclosed; and

3 (3) protect against discrimination by an insurer

4 or employer based upon an individual’s genetic infor5 mation.

6 SEC. 3. DEFINITIONS.

7 As used in this Act:

8 (1) DNA.—The term ‘‘DNA’’ means

9 deoxyribonucleic acid.

10 (2) DNA SAMPLE.—The term ‘‘DNA sample’’

11 means any human biological specimen from which

12 DNA can be extracted, or the DNA extracted from

13 such specimen.

14 (3) EMPLOYER.—The term ‘‘employer’’ has the

15 same meaning given such term in section 3(d) of the

16 Fair Labor Standards Act of 1938 (29 U.S.C.

17 203(d)).

18 (4) GENETIC INFORMATION.—The term ‘‘ge19 netic information’’ means the information about

20 genes, gene products or inherited characteristics that

21 may derive from an individual or a family member.

22 (5) GENETIC TEST.—The term ‘‘genetic test’’

23 means a test for determining the presence or ab24 sence of genetic characteristics in an individual, in25 cluding tests of nucleic acids such as DNA, RNA
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1 and mitochondrial DNA, chromosomes or proteins in

2 order to diagnose a genetic characteristic.

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

4 insurance company, health care service contractor,

5 fraternal benefit organization, insurance agent, third

6 party administrator, insurance support organization

7 or other person subject to regulation under State in8 surance laws. Such term includes self-funded health

9 plans and health plans regulated under the Em10 ployee Retirement Income Security Act of 1974 (29

11 U.S.C. 1001 et seq.).

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

13 the Secretary of Health and Human Services.

14 SEC. 4. REQUIREMENTS FOR DISCLOSURE OF GENETIC IN15 FORMATION.

16 (a) PROHIBITION.—

17 (1) IN GENERAL.—Except as provided in para18 graph (2), regardless of the manner in which genetic

19 information was received, or of the source of such

20 information, including information received from an

21 individual, an entity may not disclose or be com22 pelled (by subpoena or any other means) to disclose

23 genetic information about an individual unless such

24 disclosure is specifically authorized by the individual

25 involved or the legal representative of the individual
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1 through a written authorization which includes a de2 scription of the information being disclosed, the

3 name of the individual or entity to whom the disclo4 sure is being made, and the purpose of the disclo5 sure.

6 (2) EXCEPTIONS.—Notwithstanding paragraph

7 (1), genetic information concerning an individual

8 may be disclosed if such disclosure—

9 (A) is authorized under Federal or State

10 criminal laws relating to the identification of in11 dividuals, or as is necessary for the purpose of

12 a criminal or death investigation, a criminal or

13 juvenile proceeding, an inquest, or a child fatal14 ity review by a multidisciplinary child abuse

15 team;

16 (B) is required under the specific order of

17 a Federal or State court;

18 (C) is authorized under Federal or State

19 law for the purpose of establishing paternity;

20 (D) is for the purpose of furnishing genetic

21 information relating to a decedent to the blood

22 relatives of the decedent for the purpose of

23 medical diagnosis; or

24 (E) is for the purpose of identifying bodies.
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1 (b) APPLICATION OF SECTION.—The prohibitions of

2 this section shall apply to any redisclosure by any entity

3 after another entity has disclosed the genetic information.

4 SEC. 5. PROHIBITION ON CERTAIN EMPLOYMENT PRAC5 TICES.

6 (a) DISCRIMINATION AS TO RIGHTS OR BENEFITS.—

7 No employer may seek to obtain, obtain, or use the genetic

8 information of an employee or a prospective employee, or

9 require a genetic test of an employee or prospective em10 ployee, to distinguish between or discriminate against or

11 restrict any right or benefit otherwise due or available to

12 the employee or prospective employee.

13 (b) ENFORCEMENT.—The powers, remedies, and pro14 cedures set forth in sections 705 through 709 of the Civil

15 Rights Act of 1964 shall be the powers, remedies, and pro16 cedures this section provides to any person alleging a vio17 lation of this section.

18 SEC. 6. REQUIREMENTS RELATING TO INSURERS.

19 (a) GENERAL PROHIBITION.—An insurer offering

20 health insurance may not use genetic information to re21 ject, deny, limit, cancel, refuse to renew, increase the rates

22 of, or otherwise affect health insurance.

23 (b) PROHIBITION ON INDUCEMENT.—With respect to

24 a genetic test conducted in accordance with subsection (c),
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1 an insurer may not use such a genetic test as an induce2 ment for the purchase of insurance.

3 (c) PERMISSIBILITY OF TESTS.—If an insurer re4 quests that an applicant for insurance (other than an ap5 plicant for health insurance) take a genetic test in connec6 tion with an application for insurance, the use of the re7 sults of such test shall be disclosed to the applicant and

8 the insurer shall obtain the specific written authorization

9 of the applicant for such disclosure.

10 (d) APPLICATION.—This section shall apply only to

11 insurance policies issued on or after the date of enactment

12 of this Act, and to the renewal of policies issued before,

13 on, or after such date of enactment.

14 SEC. 7. FURTHER RECOMMENDATION BY THE NATIONAL

15 BIOETHICS ADVISORY COMMISSION.

16 Not later than August 31, 1996, the National

17 Bioethics Advisory Commission shall prepare and submit

18 to the appropriate committees of Congress a report con19 taining recommendations on—

20 (1) the development and implementation of

21 standards to provide increased protection for the col22 lection, storage, and use of identifiable DNA sam23 ples and genetic information obtained from those

24 samples; and
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1 (2) the development and implementation of ap2 propriate standards for the acquisition and retention

3 of genetic information in all settings, including ap4 propriate exceptions.

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