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Ethics

A Bill to Protect Genetic Privacy introduced (but not yet acted upon) in The US Senate

Headings
The Act


Genetic Privacy and Nondiscrimination Act of 1995 (Introduced in the Senate)

S 1416 IS

104th CONGRESS

1st Session

S. 1416

To establish limitation with respect to the disclosure and use of genetic
information, and for other purposes.

IN THE SENATE OF THE UNITED STATES

November 15, 1995

Mr. HATFIELD (for himself and Mr. MACK) introduced the following bill; which
was read twice and referred to the Committee on Labor and Human Resources

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A BILL

To establish limitation with respect to the disclosure and use of genetic
information, and for other purposes.

Be it enacted by the Senate and House of Representatives 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 1995.

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 information can lead to
significant harm to the individual, including stigmatization and
discrimination in areas such as employment, education, health care
and insurance.

(4) An analysis of an individuals DNA provides information not
only about an individual, but also about the individual's parents,
siblings and children.

(5) Current legal protections for genetic information, tissue
samples and DNA samples are inadequate to protect genetic privacy,
and require further attention.

(6) Laws for the collection, storage and use of identifiable DNA
samples and private genetic information 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 genetic information is
disclosed;

(2) define the circumstances under which an individual's genetic
information may be disclosed; and

(3) protect against discrimination by an insurer or employer based
upon an individual's genetic information.

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 genetic 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 absence of genetic characteristics in
an individual, including 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 insurance laws.
Such term includes self-funded health plans and health plans
regulated under the Employee 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 paragraph (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 compelled (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
description of the information being disclosed, the name of the
individual or entity to whom the disclosure is being made, and the
purpose of the disclosure.

(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 individuals, or as is
necessary for the purpose of a criminal or death
investigation, a criminal or juvenile proceeding, an inquest,
or a child fatality 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 PRACTICES.

(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 employee, 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 procedures set forth in
sections 705 through 709 of the Civil Rights Act of 1964 shall be the
powers, remedies, and procedures this section provides to any person
alleging a violation of this section.

SEC. 6. REQUIREMENTS RELATING TO INSURERS.

(a) GENERAL PROHIBITION- An insurer offering health insurance may not
use genetic information to reject, 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 inducement for the purchase of insurance.

(c) PERMISSIBILITY OF TESTS- If an insurer requests that an applicant
for insurance (other than an applicant for health insurance) take a
genetic test in connection with an application for insurance, the use
of the results 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 August 31, 1996, 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 collection, storage, and use of
identifiable DNA samples and genetic information obtained from
those samples; and

(2) the development and implementation of appropriate standards
for the acquisition and retention of genetic information in all
settings, including appropriate exceptions.

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