I 
108TH CONGRESS 
1ST SESSION H. R. 3636
To amend the Public Health Service Act to prohibit health discrimination 
against individuals and their family members on the basis of genetic 
information, and for other purposes. 
IN THE HOUSE OF REPRESENTATIVES 
NOVEMBER 21, 2003
Mr. STEARNS introduced the following bill; which was referred to the 
Committee on Energy and Commerce 
A BILL 
To amend the Public Health Service Act to prohibit health 
discrimination against individuals and their family mem-
bers on the basis 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 2003’’.
SEC. 2. AMENDMENTS TO THE PUBLIC HEALTH SERVICE 
ACT. 
(a) AMENDMENTS RELATING TO THE GROUP MAR-
KET.—
(1) PROHIBITION OF HEALTH DISCRIMINATION 
ON THE BASIS OF GENETIC INFORMATION IN THE 
GROUP MARKET.—
(A) NO
ENROLLMENT
RESTRICTION
FOR 
GENETIC SERVICES.—Section 2702(a)(1)(F) of 
the Public Health Service Act (42 U.S.C. 
300gg–1(a)(1)(F)) is amended by inserting be-
fore the period the following: ‘‘(including infor-
mation about a request for or receipt of genetic 
services)’’. 
(B) NO
DISCRIMINATION
IN
PREMIUMS 
BASED
ON
PREDICTIVE
GENETIC
INFORMA-
TION.—Subpart 2 of part A of title XXVII of 
the Public Health Service Act (42 U.S.C. 
300gg–4 et seq.) is amended by adding at the 
end the following new section: 
‘‘SEC. 
2707. 
PROHIBITING 
PREMIUM 
DISCRIMINATION 
AGAINST GROUPS ON THE BASIS OF PRE-
DICTIVE GENETIC INFORMATION IN THE 
GROUP MARKET. 
‘‘A group health plan, or a health insurance issuer 
offering group health insurance coverage in connection
with a group health plan shall not adjust premium or con-
tribution amounts for a group on the basis of predictive 
genetic information concerning any individual (including 
a dependent) or family member of the individual (includ-
ing information about a request for or receipt of genetic 
services).’’. 
(C) CONFORMING
AMENDMENT.—Section 
2702(b) of the Public Health Service Act (42 
U.S.C. 300gg–1(b)) is amended by adding at 
the end the following: 
‘‘(3) REFERENCE
TO
RELATED
PROVISION.—
For a provision prohibiting the adjustment of pre-
mium or contribution amounts for a group under a 
group health plan on the basis of predictive genetic 
information (including information about a request 
for or receipt of genetic services), see section 2707.’’. 
(2) DEFINITIONS.—Section 2791(d) of the Pub-
lic Health Service Act (42 U.S.C. 300gg–91(d)) is 
amended by adding at the end the following: 
‘‘(15) FAMILY
MEMBER.—The term ‘family 
member’ means, with respect to an individual—
‘‘(A) the spouse of the individual; 
‘‘(B) a dependent child of the individual; 
and
‘‘(C) all other individuals related by blood 
to the individual or the spouse or child de-
scribed in subparagraph (A) or (B). 
‘‘(16) GENETIC SERVICES.—The term ‘genetic 
services’ means health services for an individual pro-
vided to interpret and assess predictive genetic infor-
mation for diagnostic or therapeutic purposes as well 
as to counsel individuals regarding the use of spe-
cific predictive genetic information. 
‘‘(17) PREDICTIVE GENETIC INFORMATION.—
‘‘(A) IN GENERAL.—The term ‘predictive 
genetic information’ means individually identifi-
able information which identifies the presence, 
absence, variation, alteration, or modification of 
a human gene or genes that—
‘‘(i) are scientifically or medically 
identifiable; and 
‘‘(ii) are—
‘‘(I) known to be a primary cause 
of a disease, disorder, or syndrome in 
a person, or associated with a signifi-
cantly increased statistical risk of de-
velopment of a disease, disorder, or 
syndrome in a person, but which have 
not resulted in signs in the person
that would otherwise permit diagnosis 
of the disease, disorder, or syndrome; 
or 
‘‘(II) associated with an in-
creased statistical risk of a person 
having offspring with a disease, dis-
order, or syndrome. 
‘‘(B) LIMITATIONS.—The term ‘predictive 
genetic information’ does not include—
‘‘(i) information from which individual 
identifiers 
are 
removed, 
encoded, 
or 
encrypted to prevent disclosure of the indi-
vidual’s identity; 
‘‘(ii) information for research con-
ducted in compliance with the regulations 
and protections provided for under parts 
50 and 56 of title 21 and under part 46 
of title 45, Code of Federal Regulations; or 
‘‘(iii) information related to a mani-
fested disease, disorder, impairment, or 
condition which could be reasonably de-
tected by a health care professional with 
appropriate training and expertise in the 
field of medicine involved.
‘‘(18) PREDICTIVE GENETIC TEST.—The term 
‘predictive genetic test’ means a laboratory test on 
a biological sample of a person performed solely to 
obtain predictive genetic information.’’. 
(b) AMENDMENTS RELATING TO THE INDIVIDUAL 
MARKET.—The first subpart 3 of part B of title XXVII 
of the Public Health Service Act (42 U.S.C. 300gg–51 et 
seq.) (relating to other requirements) is amended by add-
ing at the end the following: 
‘‘SEC. 2753. PROHIBITION OF HEALTH DISCRIMINATION ON 
THE BASIS OF PREDICTIVE GENETIC INFOR-
MATION. 
‘‘(a) PROHIBITION ON PREDICTIVE GENETIC INFOR-
MATION AS A CONDITION OF ELIGIBILITY.—A health in-
surance issuer offering health insurance coverage in the 
individual market may not use predictive genetic informa-
tion as a condition of eligibility of an individual to enroll 
in individual health insurance coverage (including infor-
mation about a request for or receipt of genetic services). 
‘‘(b) PROHIBITION ON PREDICTIVE GENETIC INFOR-
MATION IN SETTING PREMIUM RATES.—A health insur-
ance issuer offering health insurance coverage in the indi-
vidual market shall not adjust premium rates for individ-
uals on the basis of predictive genetic information con-
cerning such an individual (including a dependent) or a
family member of the individual (including information 
about a request for or receipt of genetic services).’’. 
(c) EFFECTIVE DATE.—The amendments made by 
this section shall apply with respect to—
(1) group health plans, and health insurance 
coverage offered in connection with group health 
plans, for plan years beginning after 1 year after the 
date of enactment of this Act; and 
(2) health insurance coverage offered, sold, 
issued, renewed, in effect, or operated in the indi-
vidual market after 1 year after the date of enact-
ment of this Act.
Æ