I
105TH CONGRESS
2D SESSION
H. R. 3299
To establish limitations with respect to the disclosure and use of genetic
information in connection with group health plans and health insurance
coverage, to provide for consistent standards applicable in connection
with hospital care and medical services provided under title 38 of the
United States Code, to prohibit employment discrimination on the basis
of genetic information and genetic testing, and for other purposes.
IN THE HOUSE OF REPRESENTATIVES
FEBRUARY 26, 1998
Mrs. LINDA SMITH of Washington introduced the following bill; which was re-
ferred to the Committee on Commerce, and in addition to the Committees
on Education and the Workforce, and Veterans’ Affairs, for a period to
be subsequently determined by the Speaker, in each case for consider-
ation 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 in connection with group
health plans and health insurance coverage, to provide
for consistent standards applicable in connection with
hospital care and medical services provided under title
38 of the United States Code, to prohibit employment
discrimination on the basis of genetic information and
genetic testing, 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 ‘‘Family Genetic Pri-
vacy and Protection Act’’.
SEC. 2. PROHIBITION OF HEALTH INSURANCE DISCRIMINA-
TION ON THE BASIS OF GENETIC INFORMA-
TION.
(a) GROUP COVERAGE.—
(1) AMENDMENTS TO PUBLIC HEALTH SERVICE
ACT.—
(A) INCLUSION OF GENETIC TESTING IN
NONDISCRIMINATION
REQUIREMENTS.—Section
2702(a)(1)(F) of the Public Health Service Act
(42 U.S.C. 300gg–1(a)(1)(F)), as added by sec-
tion 102(a) of Health Insurance Portability and
Accountability Act of 1996, is amended by in-
serting ‘‘(or a request for, or receipt of, genetic
information or a genetic test)’’ after ‘‘genetic
information’’.
(B) PROHIBITIONS AGAINST USE AND DIS-
CLOSURE OF GENETIC INFORMATION.—Subpart
2 of part A of title XXVII of the Public Health
Service Act, as amended by section 703(a) of
Public Law 104–204, is amended by adding at
the end the following new section:
‘‘SEC. 2706. PROHIBITIONS AGAINST USE AND DISCLOSURE
OF GENETIC INFORMATION.
‘‘(a) PROHIBITION OF USE OF GENETIC INFORMA-
TION.—A group health plan, and a health insurance issuer
offering health insurance coverage in connection with a
group health plan, may not use genetic information to re-
ject, deny, limit, cancel, refuse to renew, establish differen-
tial rates or premium payments for, or otherwise affect
benefits provided under the plan or health insurance cov-
erage offered in connection with the plan.
‘‘(b) PROHIBITION OF DISCLOSURE OF GENETIC IN-
FORMATION.—
‘‘(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, a health insurance issuer in connection
with health insurance coverage offered in connection
with a group health plan and a group health plan
may not disclose or be compelled (by subpoena or
any other means) to disclose genetic information
about an individual unless such disclosure is specifi-
cally authorized by the individual involved or the
legal representative of the individual through a writ-
ten authorization which includes a description of the
information being disclosed, the name of the individ-
ual or entity to whom the disclosure is being made,
and the purpose of the disclosure.
‘‘(2) 
EXCEPTIONS.—Notwithstanding 
para-
graph (1), genetic information concerning an indi-
vidual 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; or
‘‘(D) is for the purpose of identifying bod-
ies.
‘‘(3) APPLICATION OF SUBSECTION.—The pro-
hibitions of this subsection shall apply to any re-
disclosure by any entity after another entity has dis-
closed the genetic information.’’.
(C) DEFINITIONS.—Section 2791(d) of the
Public Health Service Act (42 U.S.C. 300gg–
91(d)) is amended by adding at the end the fol-
lowing new paragraph:
‘‘(15) 
GENETIC
INFORMATION; 
GENETIC
TEST.—
‘‘(A) GENETIC INFORMATION.—The term
‘genetic information’ with respect to an individ-
ual means information about the genes of the
individual or a member of the individual’s fam-
ily or about any gene products or inherited
characteristics that may derive from the indi-
vidual or a member of the individual’s family.
‘‘(B) GENETIC TEST.—The term ‘genetic
test’ means a test for determining the presence
or absence of genetic characteristics in an indi-
vidual, including tests of nucleic acids such as
DNA, RNA, and mitochondrial DNA, chro-
mosomes, or proteins in order to diagnose a ge-
netic characteristic.’’.
(D) 
CONFORMING
AMENDMENT.—Section
2723(c) of such Act (42 U.S.C. 300gg–23(c)), as
amended by section 604(b)(2) of Public Law 104–
204, is amended by striking ‘‘section 2704’’ and in-
serting ‘‘sections 2704 and 2706’’.
(2) ERISA AMENDMENTS.—
(A) INCLUSION OF GENETIC TESTING IN
NONDISCRIMINATION
REQUIREMENTS.—Section
702(a)(1)(F) of the Employee Retirement In-
come Security Act of 1974 (29 U.S.C.
1182(a)(1)(F)), as added by section 101(a) of
Health Insurance Portability and Accountability
Act of 1996, is amended by inserting ‘‘(or a re-
quest for, or receipt of, genetic information or
a genetic test)’’ after ‘‘genetic information’’.
(B) PROHIBITION AGAINST USE AND DIS-
CLOSURE OF GENETIC INFORMATION.—Subpart
B of part 7 of subtitle B of title I of the Em-
ployee Retirement Income Security Act of 1974,
as amended by section 702(a) of Public Law
104–204, is amended by adding at the end the
following new section:
‘‘SEC. 713. PROHIBITION AGAINST USE AND DISCLOSURE
OF GENETIC INFORMATION.
‘‘(a) PROHIBITION OF USE OF GENETIC INFORMA-
TION.—A group health plan, and a health insurance in-
surer offering health insurance coverage in connection
with a group health plan, may not use genetic information
to reject, deny, limit, cancel, refuse to renew, increase the
rates of, or otherwise affect benefits provided under the
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; or
‘‘(D) is for the purpose of identifying bod-
ies.
‘‘(3) APPLICATION OF SUBSECTION.—The pro-
hibitions of this subsection shall apply to any re-
disclosure by any entity after another entity has dis-
closed the genetic information.’’.
(C) DEFINITIONS.—Section 733(d) of the
Employee Retirement Income Security Act of
1974 (29 U.S.C. 1186(d)) is amended by add-
ing at the end the following new paragraph:
‘‘(5) GENETIC INFORMATION; GENETIC TEST.—
‘‘(A) The term ‘genetic information’ with
respect to an individual means information
about the genes of the individual or a member
of the individual’s family or about any gene
products or inherited characteristics that may
derive from the individual or a member of the
individual’s family.
‘‘(B) The term ‘genetic test’ means a test
for determining the presence or absence of ge-
netic 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.’’.
(D) CONFORMING AMENDMENTS.—(i) Sec-
tion 731(c) of such Act (29 U.S.C. 1191(c)), as
amended by section 603(b)(1) of Public Law
104–204, is amended by striking ‘‘section 711’’
and inserting ‘‘sections 711 and 713’’.
(ii) Section 732(a) of such Act (29 U.S.C.
1191a(a)), as amended by section 603(b)(2) of
Public Law 104–204, is amended by striking
‘‘section 711’’ and inserting ‘‘sections 711 and
713’’.
(iii) The table of contents in section 1 of
such Act is amended by inserting after the item
relating to section 712 the following new item:
‘‘Sec. 713. Prohibition against use and disclosure of genetic information.’’.
(b) INDIVIDUAL HEALTH INSURANCE.—Part B of
title XXVII of the Public Health Service Act, as amended
by section 605(a) of Public Law 104–204, is amended by
inserting after section 2751 the following new section:
‘‘SEC. 2752. PROHIBITION AGAINST USE AND DISCLOSURE
OF GENETIC INFORMATION.
‘‘The provisions of section 2706 shall apply to health
insurance coverage offered by a health insurance issuer
in the individual market in the same manner as it applies
to health insurance coverage offered by a health insurance
issuer in connection with a group health plan in the small
or large group market.’’.
(c) TREATMENT OF GENETIC INFORMATION UNDER
PROGRAMS ADMINISTERED
BY
THE DEPARTMENT
OF
VETERANS’ AFFAIRS.—
(1) IN GENERAL.—Subchapter III of chapter
73 of title 38, United States Code, is amended by
inserting after section 7334 the following new sec-
tion:
‘‘§ 7335. Treatment of genetic information
‘‘The Secretary shall prescribe standards, relating to
the use and disclosure of genetic information in connection
with hospital care and medical services provided under
chapter 17 of this title, which are consistent with the
standards applicable under section 2706 of the Public
Health Service Act (relating to prohibitions against use
and disclosure of genetic information) in connection with
benefits provided by group health plans and health insur-
ance coverage offered by health insurance issuers.’’.
(2) CONFORMING AMENDMENT.—The table of
sections for chapter 73 of title 38, United States
Code is amended by inserting after the item relating
to section 7334 the following new item:
‘‘7335. Treatment of genetic information.’’.
(d) EFFECTIVE DATES.—(1) The amendments made
by subsection (a) shall apply with respect to group health
plans for plan years beginning on or after January 1,
1998.
(2) The amendments made by subsection (b) shall
apply with respect to health insurance coverage offered,
sold, issued, renewed, in effect, or operated in the individ-
ual market on or after such date.
(3) The amendments made by subsection (c) shall
apply with respect to hospital care and medical services
provided on or after such date.
SEC. 3. PROHIBITION OF EMPLOYMENT PRACTICES IN-
VOLVING GENETIC INFORMATION.
(a) ACQUISITION AND USE OF GENETIC INFORMA-
TION AND GENETIC TESTING.—
(1) IN GENERAL.—Subject to paragraph (2), it
shall be an unlawful employment practice for an em-
ployer—
(A) to attempt to acquire, to acquire, or to
use the genetic information of an employee or
applicant for employment, or
(B) to require a genetic test of an em-
ployee or applicant for employment,
for the purpose of distinguishing among employees
or applicants for employment or for the purpose of
discriminating against or restricting any right or
benefit otherwise due or available to an employee or
applicant for employment, in connection with any
matter relating to employment or employment op-
portunities, including terms and conditions of em-
ployment, privileges and benefits for employees, and
termination of employment.
(2) EXCEPTION.—Paragraph (1) shall not
apply with respect to any act described in paragraph
(1) with respect to genetic information or any re-
quirement described in paragraph (1) for a genetic
test if such act or requirement—
(A) is job-related and consistent with busi-
ness necessity, or
(B) is required under Federal or State law.
(b) NONDISCLOSURE AND CONFIDENTIALITY OF GE-
NETIC INFORMATION.—It shall be an unlawful employ-
ment practice for an employer—
(1) to allow access to genetic information of
employees to any person other than persons whose
duties or responsibilities in connection with the em-
ployer require access to such information for pur-
poses consistent with subsection (a), or
(2) to establish or maintain access by the em-
ployer to an employee’s genetic information which
has been acquired—
(A) by any employee welfare benefit plan
established or maintained by the employer in
which such employee is a participant (or by any
other fiduciary of such a plan), or
(B) by any health insurance issuer offering
health insurance coverage in connection with a
group health plan in which such employee is a
participant,
without the prior, written, and informed consent of the
employee, signed by the employee, setting forth the person
or persons to whom access to such information is to be
allowed.
(c) 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.
(d) DEFINITIONS.—As used in this section:
(1) EMPLOYER; EMPLOYEE.—The terms ‘‘em-
ployer’’ and ‘‘employee’’ have the meanings given
such terms, respectively, in section 701 of the Civil
Rights Act of 1964 (42 U.S.C. 2000e).
(2) EMPLOYMENT OR EMPLOYMENT OPPORTU-
NITIES.—The term ‘‘employment or employment op-
portunities’’ includes job application procedures, hir-
ing, advancement, discharge, compensation, job
training, or any other term, condition, or privilege of
employment.
(3) GENETIC
INFORMATION.—The term ‘‘ge-
netic information’’ with respect to an individual
means information about the genes of the individual
or a member of the individual’s family or about any
gene products or inherited characteristics that may
derive from the individual or a member of the indi-
vidual’s family.
(4) 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.
(5) OTHER TERMS.—
(A) GROUP
HEALTH
PLAN; HEALTH
IN-
SURANCE
ISSUER; HEALTH
INSURANCE
COV-
ERAGE.—The terms ‘‘group health plan’’,
‘‘health insurance issuer’’, and ‘‘health insur-
ance coverage’’ have the meanings given such
terms, respectively, in section 733 of the Em-
ployee Retirement Income Security Act of 1974
(29 U.S.C. 1191b(a)).
(B) EMPLOYEE WELFARE BENEFIT PLAN;
PARTICIPANT.—The terms ‘‘employee welfare
benefit plan’’ and ‘‘participant’’ have the mean-
ings given such terms, respectively, in section 3
of the Employee Retirement Income Security
Act of 1974 (29 U.S.C. 1002).
SEC. 4. NATIONAL BIPARTISAN COMMISSION ON THE USE
OF GENETIC INFORMATION.
(a) ESTABLISHMENT.—There is established a com-
mission to be known as the National Bipartisan Commis-
sion on the Use of Genetic Information (in this section
referred to as the ‘‘Commission’’).
(b) DUTIES OF THE COMMISSION.—The Commission
shall make recommendations with respect to the following:
(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.
(2) The development and implementation of ap-
propriate standards for the acquisition and retention
of genetic information in all settings, but particu-
larly in clinical settings, including appropriate excep-
tions.
(c) MEMBERSHIP.—
(1) NUMBER AND APPOINTMENT.—The Com-
mission shall be composed of 17 members, of
whom—
(A) four shall be appointed by the Presi-
dent;
(B) six shall be appointed by the Majority
Leader of the Senate, in consultation with the
Minority Leader of the Senate, of whom not
more than 4 shall be of the same political party;
(C) six shall be appointed by the Speaker
of the House of Representatives, in consultation
with the Minority Leader of the House of Rep-
resentatives, of whom not more than 4 shall be
of the same political party; and
(D) one, who shall serve as Chairman of
the Commission, appointed jointly by the Presi-
dent, Majority Leader of the Senate, and the
Speaker of the House of Representatives.
(2) EXPERTISE.—It is the sense of the Con-
gress that the Commission should include Members
with expertise in the following areas:
(A) Science and clinical research.
(B) Religion.
(C) Genetic counseling, and patient advo-
cacy and support.
(D) Ethics.
(E) Law.
(3) DEADLINE FOR APPOINTMENT.—Members
of the Commission shall be appointed by not later
than January 1, 1999.
(4) TERMS
OF
APPOINTMENT.—The term of
any appointment under paragraph (1) to the Com-
mission shall be for the life of the Commission.
(5) MEETINGS.—The Commission shall meet at
the call of its Chairman or a majority of its mem-
bers.
(6) QUORUM.—A quorum shall consist of 8
members of the Commission, except that 4 members
may conduct a hearing under subsection (e).
(7) VACANCIES.—A vacancy on the Commission
shall be filled in the same manner in which the origi-
nal appointment was made not later than 30 days
after the Commission is given notice of the vacancy
and shall not affect the power of the remaining
members to execute the duties of the Commission.
(8) COMPENSATION.—Members of the Commis-
sion shall receive no additional pay, allowances, or
benefits by reason of their service on the Commis-
sion.
(9) EXPENSES.—Each member of the Commis-
sion shall receive travel expenses and per diem in
lieu of subsistence in accordance with sections 5702
and 5703 of title 5, United States Code.
(d) STAFF AND SUPPORT SERVICES.—
(1) EXECUTIVE DIRECTOR.—
(A) APPOINTMENT.—The Chairman shall
appoint an executive director of the Commis-
sion.
(B) COMPENSATION.—The executive direc-
tor shall be paid the rate of basic pay for level
V of the Executive Schedule.
(2) STAFF.—With the approval of the Commis-
sion, the executive director may appoint such per-
sonnel as the executive director considers appro-
priate.
(3) APPLICABILITY OF CIVIL SERVICE LAWS.—
The staff of the Commission shall be appointed with-
out regard to the provisions of title 5, United States
Code, governing appointments in the competitive
service, and shall be paid without regard to the pro-
visions of chapter 51 and subchapter III of chapter
53 of such title (relating to classification and Gen-
eral Schedule pay rates).
(4) EXPERTS
AND
CONSULTANTS.—With the
approval of the Commission, the executive director
may procure temporary and intermittent services
under section 3109(b) of title 5, United States Code.
(5) PHYSICAL FACILITIES.—The Administrator
of the General Services Administration shall locate
suitable office space for the operation of the Com-
mission. The facilities shall serve as the head-
quarters of the Commission and shall include all
necessary equipment and incidentals required for the
proper functioning of the Commission.
(e) POWERS OF COMMISSION.—
(1) HEARINGS
AND
OTHER
ACTIVITIES.—For
the purpose of carrying out its duties, the Commis-
sion may hold such hearings and undertake such
other activities as the Commission determines to be
necessary to carry out its duties.
(2) STUDIES BY GAO.—Upon the request of the
Commission, the Comptroller General shall conduct
such studies or investigations as the Commission de-
termines to be necessary to carry out its duties.
(3) COST
ESTIMATES
BY
CONGRESSIONAL
BUDGET OFFICE AND OFFICE OF THE CHIEF ACTU-
ARY OF HCFA.—
(A) The Director of the Congressional
Budget Office or the Chief Actuary of the
Health Care Financing Administration, or both,
shall provide to the Commission, upon the re-
quest of the Commission, such cost estimates as
the Commission determines to be necessary to
carry out its duties.
(B) The Commission shall reimburse the
Director of the Congressional Budget Office for
expenses relating to the employment in the of-
fice of the Director of such additional staff as
may be necessary for the Director to comply
with requests by the Commission under sub-
paragraph (A).
(4) DETAIL OF FEDERAL EMPLOYEES.—Upon
the request of the Commission, the head of any Fed-
eral agency is authorized to detail, without reim-
bursement, any of the personnel of such agency to
the Commission to assist the Commission in carry-
ing out its duties. Any such detail shall not interrupt
or otherwise affect the civil service status or privi-
leges of the Federal employee.
(5) TECHNICAL
ASSISTANCE.—Upon the re-
quest of the Commission, the head of a Federal
agency shall provide such technical assistance to the
Commission as the Commission determines to be
necessary to carry out its duties.
(6) USE OF MAILS.—The Commission may use
the United States mails in the same manner and
under the same conditions as Federal agencies and
shall, for purposes of the frank, be considered a
commission of Congress as described in section 3215
of title 39, United States Code.
(7) OBTAINING
INFORMATION.—The Commis-
sion may secure directly from any Federal agency
information necessary to enable it to carry out its
duties, if the information may be disclosed under
section 552 of title 5, United States Code. Upon re-
quest of the Chairman of the Commission, the head
of such agency shall furnish such information to the
Commission.
(8) ADMINISTRATIVE
SUPPORT
SERVICES.—
Upon the request of the Commission, the Adminis-
trator of General Services shall provide to the Com-
mission on a reimbursable basis such administrative
support services as the Commission may request.
(9) PRINTING.—For purposes of costs relating
to printing and binding, including the cost of per-
sonnel detailed from the Government Printing Of-
fice, the Commission shall be deemed to be a com-
mittee of the Congress.
(f) REPORT.—Not later than 18 months after the
date of the enactment of this Act, the Commission shall
submit a report to the President and the Congress which
shall contain a detailed statement of only those rec-
ommendations, findings, and conclusions of the Commis-
sion that receive the approval of at least 11 members of
the Commission.
(g) TERMINATION.—The Commission shall terminate
30 days after the date of submission of the report required
in subsection (f).
Æ