I
106TH CONGRESS
1ST SESSION
H. R. 2555
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
JULY 19, 1999
Mr. STEARNS (for himself, Mr. BURTON of Indiana, Mr. CANADY of Florida,
Mr. COOK, Mr. DEFAZIO, Mr. DUNCAN, Mr. FALEOMAVAEGA, Mr. FARR
of California, Mr. FOLEY, Mr. LOBIONDO, Mrs. MEEK of Florida, Mr.
MCCOLLUM, Mr. OXLEY, Mrs. ROUKEMA, Mr. SENSENBRENNER, Mr.
TAYLOR of North Carolina, and Mr. UPTON) introduced the following bill;
which was referred to the Committee on Commerce, and in addition to
the Committees on Education and the Workforce, Veterans’ Affairs, and
Government Reform, 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 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 ‘‘Genetic Privacy and
Nondiscrimination Act of 1999’’.
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 is amended by adding at the end
the following new section:
‘‘SEC. 2707. 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 indi-
vidual 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 indi-
vidual 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 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)) is
amended by striking ‘‘section 2704’’ and insert-
ing ‘‘sections 2704 and 2707’’.
(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)) is amended by inserting ‘‘(or a
request 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
is amended by adding at the end the following
new section:
‘‘SEC. 714. 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
plan or health insurance coverage 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 indi-
vidual 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 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)) is
amended by striking ‘‘section 711’’ and insert-
ing ‘‘sections 711 and 714’’.
(ii) Section 732(a) of such Act (29 U.S.C.
1191a(a)) is amended by striking ‘‘section 711’’
and inserting ‘‘sections 711 and 714’’.
(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. 714. Prohibition against use and disclosure of genetic information.’’.
(b) INDIVIDUAL HEALTH INSURANCE.—Part B of
title XXVII of the Public Health Service Act is amended
by inserting after section 2752 the following new section:
‘‘SEC. 2753. PROHIBITION AGAINST USE AND DISCLOSURE
OF GENETIC INFORMATION.
‘‘The provisions of section 2707 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 2707 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,
2000.
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. 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.
Æ