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 members on the basis of genetic information, and for other 

purposes.

1 Be it enacted by the Senate and House of Representa2 tives of the United States of America in Congress assembled,

3 SECTION 1. SHORT TITLE. 

4 This Act may be cited as the ‘‘Genetic Privacy and 

5 Nondiscrimination Act of 2003’’. 
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1 SEC. 2. AMENDMENTS TO THE PUBLIC HEALTH SERVICE 

2 ACT. 

3 (a) AMENDMENTS RELATING TO THE GROUP MAR4 KET.—

5 (1) PROHIBITION OF HEALTH DISCRIMINATION

6 ON THE BASIS OF GENETIC INFORMATION IN THE

7 GROUP MARKET.—

8 (A) NO ENROLLMENT RESTRICTION FOR

9 GENETIC SERVICES.—Section 2702(a)(1)(F) of 

10 the Public Health Service Act (42 U.S.C. 

11 300gg–1(a)(1)(F)) is amended by inserting be12 fore the period the following: ‘‘(including infor13 mation about a request for or receipt of genetic 

14 services)’’. 

15 (B) NO DISCRIMINATION IN PREMIUMS

16 BASED ON PREDICTIVE GENETIC INFORMA17 TION.—Subpart 2 of part A of title XXVII of 

18 the Public Health Service Act (42 U.S.C. 

19 300gg–4 et seq.) is amended by adding at the 

20 end the following new section: 

21 ‘‘SEC. 2707. PROHIBITING PREMIUM DISCRIMINATION 

22 AGAINST GROUPS ON THE BASIS OF PRE23 DICTIVE GENETIC INFORMATION IN THE 

24 GROUP MARKET. 

25 ‘‘A group health plan, or a health insurance issuer 

26 offering group health insurance coverage in connection 
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1 with a group health plan shall not adjust premium or con2 tribution amounts for a group on the basis of predictive 

3 genetic information concerning any individual (including 

4 a dependent) or family member of the individual (includ5 ing information about a request for or receipt of genetic 

6 services).’’. 

7 (C) CONFORMING AMENDMENT.—Section 

8 2702(b) of the Public Health Service Act (42 

9 U.S.C. 300gg–1(b)) is amended by adding at 

10 the end the following: 

11 ‘‘(3) REFERENCE TO RELATED PROVISION.—

12 For a provision prohibiting the adjustment of pre13 mium or contribution amounts for a group under a 

14 group health plan on the basis of predictive genetic 

15 information (including information about a request 

16 for or receipt of genetic services), see section 2707.’’. 

17 (2) DEFINITIONS.—Section 2791(d) of the Pub18 lic Health Service Act (42 U.S.C. 300gg–91(d)) is 

19 amended by adding at the end the following: 

20 ‘‘(15) FAMILY MEMBER.—The term ‘family 

21 member’ means, with respect to an individual—

22 ‘‘(A) the spouse of the individual; 

23 ‘‘(B) a dependent child of the individual; 

24 and 
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1 ‘‘(C) all other individuals related by blood 

2 to the individual or the spouse or child de3 scribed in subparagraph (A) or (B). 

4 ‘‘(16) GENETIC SERVICES.—The term ‘genetic 

5 services’ means health services for an individual pro6 vided to interpret and assess predictive genetic infor7 mation for diagnostic or therapeutic purposes as well 

8 as to counsel individuals regarding the use of spe9 cific predictive genetic information. 

10 ‘‘(17) PREDICTIVE GENETIC INFORMATION.—

11 ‘‘(A) IN GENERAL.—The term ‘predictive 

12 genetic information’ means individually identifi13 able information which identifies the presence, 

14 absence, variation, alteration, or modification of 

15 a human gene or genes that—

16 ‘‘(i) are scientifically or medically 

17 identifiable; and 

18 ‘‘(ii) are—

19 ‘‘(I) known to be a primary cause 

20 of a disease, disorder, or syndrome in 

21 a person, or associated with a signifi22 cantly increased statistical risk of de23 velopment of a disease, disorder, or 

24 syndrome in a person, but which have 

25 not resulted in signs in the person 
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1 that would otherwise permit diagnosis 

2 of the disease, disorder, or syndrome; 

3 or 

4 ‘‘(II) associated with an in5 creased statistical risk of a person 

6 having offspring with a disease, dis7 order, or syndrome. 

8 ‘‘(B) LIMITATIONS.—The term ‘predictive 

9 genetic information’ does not include—

10 ‘‘(i) information from which individual 

11 identifiers are removed, encoded, or 

12 encrypted to prevent disclosure of the indi13 vidual’s identity; 

14 ‘‘(ii) information for research con15 ducted in compliance with the regulations 

16 and protections provided for under parts 

17 50 and 56 of title 21 and under part 46 

18 of title 45, Code of Federal Regulations; or 

19 ‘‘(iii) information related to a mani20 fested disease, disorder, impairment, or 

21 condition which could be reasonably de22 tected by a health care professional with 

23 appropriate training and expertise in the 

24 field of medicine involved. 
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1 ‘‘(18) PREDICTIVE GENETIC TEST.—The term 

2 ‘predictive genetic test’ means a laboratory test on 

3 a biological sample of a person performed solely to 

4 obtain predictive genetic information.’’. 

5 (b) AMENDMENTS RELATING TO THE INDIVIDUAL

6 MARKET.—The first subpart 3 of part B of title XXVII 

7 of the Public Health Service Act (42 U.S.C. 300gg–51 et 

8 seq.) (relating to other requirements) is amended by add9 ing at the end the following: 

10 ‘‘SEC. 2753. PROHIBITION OF HEALTH DISCRIMINATION ON 

11 THE BASIS OF PREDICTIVE GENETIC INFOR12 MATION. 

13 ‘‘(a) PROHIBITION ON PREDICTIVE GENETIC INFOR14 MATION AS A CONDITION OF ELIGIBILITY.—A health in15 surance issuer offering health insurance coverage in the 

16 individual market may not use predictive genetic informa17 tion as a condition of eligibility of an individual to enroll 

18 in individual health insurance coverage (including infor19 mation about a request for or receipt of genetic services). 

20 ‘‘(b) PROHIBITION ON PREDICTIVE GENETIC INFOR21 MATION IN SETTING PREMIUM RATES.—A health insur22 ance issuer offering health insurance coverage in the indi23 vidual market shall not adjust premium rates for individ24 uals on the basis of predictive genetic information con25 cerning such an individual (including a dependent) or a 
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1 family member of the individual (including information 

2 about a request for or receipt of genetic services).’’. 

3 (c) EFFECTIVE DATE.—The amendments made by 

4 this section shall apply with respect to—

5 (1) group health plans, and health insurance 

6 coverage offered in connection with group health 

7 plans, for plan years beginning after 1 year after the 

8 date of enactment of this Act; and 

9 (2) health insurance coverage offered, sold, 

10 issued, renewed, in effect, or operated in the indi11 vidual market after 1 year after the date of enact12 ment of this Act.

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