I
105TH CONGRESS
1ST SESSION
H. R. 328
To amend the Public Health Service Act and the Employee Retirement
Income Security Act of 1974 to prohibit health issuers and group health
plans from discriminating against individuals on the basis of genetic
information.
IN THE HOUSE OF REPRESENTATIVES
JANUARY 7, 1997
Mr. SOLOMON introduced the following bill; which was referred to the Commit-
tee on Commerce, and in addition to the Committee on Education and
the Workforce, for a period to be subsequently determined by the Speak-
er, in each case for consideration of such provisions as fall within the ju-
risdiction of the committee concerned
A BILL
To amend the Public Health Service Act and the Employee
Retirement Income Security Act of 1974 to prohibit
health issuers and group health plans from discriminat-
ing against individuals on the basis of genetic informa-
tion.
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 Information
Health Insurance Nondiscrimination Act of 1997’’.
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.—
Section 2702(a)(1)(F) of the Public Health
Service Act (42 U.S.C. 300gg–1(a)(1)(F)), as
added by section 102(a) of Health Insurance
Portability and Accountability Act of 1996, is
amended by inserting ‘‘(or a request for, or re-
ceipt of, genetic information or a genetic test)’’
after ‘‘genetic information’’.
(B) LIMITATION ON COLLECTION 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. LIMITATION ON COLLECTION AND DISCLOSURE
OF GENETIC INFORMATION.
‘‘(a) LIMITATION ON COLLECTION.—A health insur-
ance issuer may not request or require an individual to
whom the issuer provides health insurance coverage in
connection with a group health plan (or an individual who
desires the issuer to provide health insurance coverage in
connection with a group health plan ), and a group health
plan may not request or require a participant or bene-
ficiary under the plan (or an individual who desires to be-
come such a participant or beneficiary), to disclose any
genetic information or to obtain any genetic test.
‘‘(b) RESTRICTION ON DISCLOSURE.—Subject to sub-
section (c), 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 dis-
close genetic information about an individual (regardless
of how the information was obtained) without a prior writ-
ten authorization of the individual (or legal representative
of the individual) that includes—
‘‘(1) a description of the information being dis-
closed,
‘‘(2) the name of the individual or person to
whom the disclosure is being made, and
‘‘(3) the purpose of the disclosure.
Such authorization is required for each disclosure.
‘‘(c) EXCEPTIONS TO DISCLOSURE RESTRICTION.—
Genetic information concerning an individual may be dis-
closed by a health insurance issuer or group health plan
if such disclosure—
‘‘(15) 
GENETIC
INFORMATION; 
GENETIC
TEST.—(A) The term ‘genetic information’ means
the information about genes, gene products, or in-
herited characteristics that may derive from an indi-
vidual or a blood-relative of the individual.
‘‘(B) The term ‘genetic test’ means a test for
determining the presence or absence of genetic char-
acteristics in an individual.’’.
(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 inserting ‘‘sections 2704 and 2706’’.
(2) ERISA AMENDMENTS.—
(A) INCLUSION
OF
GENETIC
TESTING.—
Section 702(a)(1)(F) of the Employee Retire-
ment Income 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) LIMITATION
ON
COLLECTION
AND
DISLOSURE OF GENETIC INFORMATION.—Sub-
part B of part 7 of subtitle B of title I of the
Employee 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. LIMITATION ON COLLECTION AND DISCLOSURE
OF GENETIC INFORMATION.
‘‘(a) LIMITATION ON COLLECTION.—A health insur-
ance issuer may not request or require an individual to
whom the issuer provides health insurance coverage in
connection with a group health plan (or an individual who
desires the issuer to provide health insurance coverage in
connection with a group health plan ), and a group health
plan may not request or require a participant or bene-
ficiary under the plan (or an individual who desires to be-
come such a participant or beneficiary), to disclose any
genetic information or to obtain any genetic test.
‘‘(b) RESTRICTION ON DISCLOSURE.—Subject to sub-
section (c), 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 dis-
close genetic information about an individual (regardless
of how the information was obtained) without a prior writ-
ten authorization of the individual (or legal representative
of the individual) that includes—
‘‘(1) a description of the information being dis-
closed,
‘‘(2) the name of the individual or person to
whom the disclosure is being made, and
‘‘(3) the purpose of the disclosure.
Such authorization is required for each disclosure.
‘‘(c) EXCEPTIONS TO DISCLOSURE RESTRICTION.—
Genetic information concerning an individual may be dis-
closed by a health insurance issuer or group health plan
if such disclosure—
‘‘(1) is authorized under criminal laws relating
to the identification of individuals, or is authorized
under Federal or State law and is necessary for the
purpose of a criminal or death investigation, a crimi-
nal or juvenile proceeding, an inquest, or a child fa-
tality review by a multidisciplinary child abuse team;
‘‘(2) is required under the specific order of a
court;
‘‘(3) is authorized under law for the purpose of
establishing paternity;
‘‘(4) is for the purpose of furnishing genetic in-
formation relating to a decedent to the blood rel-
atives of the decedent for the purpose of medical di-
agnosis; or
‘‘(5) is for the purpose of identifying a body.
‘‘(d) NOTICE UNDER GROUP HEALTH PLAN.—The
imposition of the requirements of this section shall be
treated as a material modification in the terms of the plan
described in section 102(a)(1), for purposes of assuring
notice of such requirements under the plan; except that
the summary description required to be provided under the
last sentence of section 104(b)(1) with respect to such
modification shall be provided by not later than 60 days
after the first day of the first plan year in which such
requirements apply.’’.
(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’ means the infor-
mation about genes, gene products, or inherited
characteristics that may derive from an individual or
a blood-relative of the individual.
‘‘(B) The term ‘genetic test’ means a test for
determining the presence or absence of genetic char-
acteristics in an individual.’’.
‘‘(2) CONSTRUCTION.—Section 731(a)(1) shall
not be construed as superseding a State law de-
scribed in paragraph (1).’’.
(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 ins0erting after the
item relating to section 712 the following new
item:
‘‘Sec. 713. Limitation on collection and disclosure of genetic information.’’.
(3) 
INTERNAL
REVENUE
CODE
AMEND-
MENTS.—
(A) 
GENETIC
INFORMATION.—Section
9802(a)(1)(F) of the Internal Revenue Code of
1986, as added by section 401(a) of the Health
Insurance Portability and Accountability Act of
1996, is amended by inserting ‘‘(or a request
for, or receipt of, genetic information or a ge-
netic test)’’ after ‘‘genetic information’’.
(B) DEFINITIONS.—Section 9805(d) of
such Act is amended by adding at the end the
following new paragraph:
‘‘(6) GENETIC INFORMATION; GENETIC TEST.—
(A) The term ‘genetic information’ means the infor-
mation about genes, gene products, or inherited
characteristics that may derive from an individual or
a blood-relative of the individual.
‘‘(B) The term ‘genetic test’ means a test for
determining the presence or absence of genetic char-
acteristics in an individual.’’.
(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. LIMITATION ON COLLECTION AND DISCLOSURE
OF GENETIC INFORMATION.
‘‘(a) IN GENERAL.—The provisions of section 2706
(other than subsection (d)) shall apply to health insurance
coverage offered by a health insurance issuer in the indi-
vidual 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.
‘‘(b) NOTICE.—A health insurance issuer under this
part shall comply with the notice requirement under sec-
tion 713(d) of the Employee Retirement Income Security
Act of 1974 with respect to the requirements referred to
in subsection (a) as if such section applied to such issuer
and such issuer were a group health plan.’’.
(c) 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 amendment 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.
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