I
105TH CONGRESS
1ST SESSION
H. R. 341
To establish limitations with respect to the disclosure and use of genetic
information, and for other purposes.
IN THE HOUSE OF REPRESENTATIVES
JANUARY 7, 1997
Mr. STEARNS (for himself, Mr. STUMP, Mr. TAYLOR of North Carolina, Mr.
CALVERT, Mr. FALEOMAVAEGA, Mr. OBERSTAR, Ms. LOFGREN, Mr.
MINGE, Mr. WATT of North Carolina, and Mr. OXLEY) introduced the
following bill; which was referred to the Committee on Commerce, and
in addition to the Committees on Government Reform and Oversight and
Education and the Workforce, 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 limitations with respect to the disclosure and
use of genetic information, and for other purposes.
Be it enacted by the Senate and House of Representa-
tives of the United States of America in Congress assembled,
SECTION 1. SHORT TITLE.
This Act may be cited as the ‘‘Genetic Privacy and
Nondiscrimination Act of 1997’’.
SEC. 2. FINDINGS AND PURPOSES.
(a) FINDINGS.—Congress finds the following:
(1) The DNA molecule contains information
about an individual’s probable medical future.
(2) Genetic information is uniquely private and
personal information that should not be disclosed
without the authorization of the individual.
(3) The improper disclosure of genetic informa-
tion can lead to significant harm to the individual,
including stigmatization and discrimination in areas
such as employment, education, health care and in-
surance.
(4) An analysis of an individual’s DNA provides
information not only about an individual, but also
about the individual’s parents, siblings and children.
(5) Current legal protections for genetic infor-
mation, tissue samples and DNA samples are inad-
equate to protect genetic privacy, and require fur-
ther attention.
(6) Laws for the collection, storage and use of
identifiable DNA samples and private genetic infor-
mation obtained from those samples are needed both
to protect individual privacy and to permit legitimate
genetic research.
(b) PURPOSES.—It is the purpose of this Act to—
(1) define the rights of individuals whose ge-
netic information is disclosed;
(2) define the circumstances under which an in-
dividual’s genetic information may be disclosed; and
(3) protect against discrimination by an insurer
or employer based upon an individual’s genetic infor-
mation.
SEC. 3. DEFINITIONS.
As used in this Act:
(1) 
DNA.—The 
term 
‘‘DNA’’ 
means
deoxyribonucleic acid.
(2) DNA SAMPLE.—The term ‘‘DNA sample’’
means any human biological specimen from which
DNA can be extracted, or the DNA extracted from
such specimen.
(3) EMPLOYER.—The term ‘‘employer’’ has the
same meaning given such term in section 3(d) of the
Fair Labor Standards Act of 1938 (29 U.S.C.
203(d)).
(4) GENETIC
INFORMATION.—The term ‘‘ge-
netic information’’ means the information about
genes, gene products or inherited characteristics that
may derive from an individual or a family member.
(5) GENETIC TEST.—The term ‘‘genetic test’’
means a test for determining the presence or ab-
sence of genetic characteristics in an individual, in-
cluding tests of nucleic acids such as DNA, RNA
and mitochondrial DNA, chromosomes or proteins in
order to diagnose a genetic characteristic.
(6) INSURER.—The term ‘‘insurer’’ means an
insurance company, health care service contractor,
fraternal benefit organization, insurance agent, third
party administrator, insurance support organization
or other person subject to regulation under State in-
surance laws. Such term includes self-funded health
plans and health plans regulated under the Em-
ployee Retirement Income Security Act of 1974 (29
U.S.C. 1001 et seq.).
(7) SECRETARY.—The term ‘‘Secretary’’ means
the Secretary of Health and Human Services.
SEC. 4. REQUIREMENTS FOR DISCLOSURE OF GENETIC
INFORMATION.
(a) PROHIBITION.—
(1) IN GENERAL.—Except as provided in para-
graph (2), regardless of the manner in which genetic
information was received, or of the source of such
information, including information received from an
individual, an entity may not disclose or be com-
pelled (by subpoena or any other means) to disclose
genetic information about an individual unless such
disclosure is specifically authorized by the individual
involved or the legal representative of the individual
through a written authorization which includes a de-
scription of the information being disclosed, the
name of the individual or entity to whom the disclo-
sure is being made, and the purpose of the disclo-
sure.
(2) EXCEPTIONS.—Notwithstanding paragraph
(1), genetic information concerning an individual
may be disclosed if such disclosure—
(A) is authorized under Federal or State
criminal laws relating to the identification of in-
dividuals, or as is necessary for the purpose of
a criminal or death investigation, a criminal or
juvenile proceeding, an inquest, or a child fatal-
ity review by a multidisciplinary child abuse
team;
(B) is required under the specific order of
a Federal or State court;
(C) is authorized under Federal or State
law for the purpose of establishing paternity;
(D) is for the purpose of furnishing genetic
information relating to a decedent to the blood
relatives of the decedent for the purpose of
medical diagnosis; or
(E) is for the purpose of identifying bodies.
(b) APPLICATION OF SECTION.—The prohibitions of
this section shall apply to any redisclosure by any entity
after another entity has disclosed the genetic information.
SEC. 5. PROHIBITION ON CERTAIN EMPLOYMENT PRAC-
TICES.
(a) DISCRIMINATION AS TO RIGHTS OR BENEFITS.—
No employer may seek to obtain, obtain, or use the genetic
information of an employee or a prospective employee, or
require a genetic test of an employee or prospective em-
ployee, to distinguish between or discriminate against or
restrict any right or benefit otherwise due or available to
the employee or prospective employee.
(b) ENFORCEMENT.—The powers, remedies, and pro-
cedures set forth in sections 705 through 709 of the Civil
Rights Act of 1964 shall be the powers, remedies, and pro-
cedures this section provides to any person alleging a vio-
lation of this section.
SEC. 6. REQUIREMENTS RELATING TO INSURERS.
(a) GENERAL PROHIBITION.—An insurer offering
health insurance may not use genetic information to re-
ject, deny, limit, cancel, refuse to renew, increase the rates
of, or otherwise affect health insurance.
(b) PROHIBITION ON INDUCEMENT.—With respect to
a genetic test conducted in accordance with subsection (c),
an insurer may not use such a genetic test as an induce-
ment for the purchase of insurance.
(c) PERMISSIBILITY OF TESTS.—If an insurer re-
quests that an applicant for insurance (other than an ap-
plicant for health insurance) take a genetic test in connec-
tion with an application for insurance, the use of the re-
sults of such test shall be disclosed to the applicant and
the insurer shall obtain the specific written authorization
of the applicant for such disclosure.
(d) APPLICATION.—This section shall apply only to
insurance policies issued on or after the date of enactment
of this Act, and to the renewal of policies issued before,
on, or after such date of enactment.
SEC. 7. FURTHER RECOMMENDATION BY THE NATIONAL
BIOETHICS ADVISORY COMMISSION.
Not later than 1 year after the date of the enactment
of this Act, the National Bioethics Advisory Commission
shall prepare and submit to the appropriate committees
of Congress a report containing recommendations on—
(1) the development and implementation of
standards to provide increased protection for the col-
lection, storage, and use of identifiable DNA sam-
ples and genetic information obtained from those
samples; and
(2) the development and implementation of ap-
propriate standards for the acquisition and retention
of genetic information in all settings, including ap-
propriate exceptions.
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