I 

108TH CONGRESS 

1ST SESSION H. R. 1910

To prohibit discrimination on the basis of genetic information with respect 

to health insurance. 

IN THE HOUSE OF REPRESENTATIVES 

MAY 1, 2003

Ms. SLAUGHTER (for herself, Mr. ABERCROMBIE, Mr. ACKERMAN, Mr. 

ALLEN, Ms. BERKLEY, Mr. BERMAN, Mrs. BIGGERT, Mr. BISHOP of New 

York, Ms. BORDALLO, Mr. BOSWELL, Mr. BOYD, Mr. BURTON of Indiana, Mrs. CAPPS, Mr. CAPUANO, Mr. CARDIN, Ms. CARSON of Indiana, 

Mr. CASE, Mrs. CHRISTENSEN, Mr. COOPER, Mr. COSTELLO, Mr. CROWLEY, Mr. CUMMINGS, Mr. DAVIS of Florida, Mrs. DAVIS of California, 

Mr. DEFAZIO, Ms. DEGETTE, Ms. DELAURO, Mr. DICKS, Mr. DINGELL, 

Mr. DOYLE, Mr. ENGEL, Mr. FARR, Mr. FOLEY, Mr. FRANK of Massachusetts, Mr. FRELINGHUYSEN, Mr. FROST, Mr. GILCHREST, Mr. 

GILLMOR, Mr. GORDON, Ms. GRANGER, Mr. GREEN of Texas, Mr. 

GUTIERREZ, Mr. HEFLEY, Mr. HINCHEY, Mr. HINOJOSA, Mr. HOEFFEL, 

Mr. HOLT, Mr. HYDE, Mr. INSLEE, Mr. ISRAEL, Ms. JACKSON-LEE of 

Texas, Ms. EDDIE BERNICE JOHNSON of Texas, Mrs. JONES of Ohio, 

Mr. KANJORSKI, Ms. KAPTUR, Mrs. KELLY, Mr. KENNEDY of Rhode Island, Mr. KILDEE, Mr. KING of New York, Mr. KUCINICH, Mr. LANTOS, 

Mr. LATOURETTE, Mr. LEACH, Mr. LOBIONDO, Ms. LOFGREN, Mrs. 

LOWEY, Mrs. MALONEY, Mr. MARKEY, Mr. MATSUI, Mrs. MCCARTHY of 

New York, Mr. MCDERMOTT, Mr. MCHUGH, Mr. MCINTYRE, Mr. 

MCNULTY, Mr. MEEHAN, Mr. MENENDEZ, Mr. MICA, Ms. MILLENDERMCDONALD, Mr. GEORGE MILLER of California, Mr. MOORE, Mr. 

MORAN of Virginia, Mr. NADLER, Mr. NEY, Mrs. NORTHUP, Ms. NORTON, Mr. OBEY, Mr. OWENS, Ms. PELOSI, Mr. PLATTS, Mr. RANGEL, 

Mr. ROTHMAN, Ms. ROYBAL-ALLARD, Ms. LINDA T. SA ́NCHEZ of California, Ms. LORETTA SANCHEZ of California, Mr. SANDERS, Ms. 

SCHAKOWSKY, Mr. SCHIFF, Mr. SERRANO, Mr. SHAYS, Mr. SHERMAN, 

Mr. SIMMONS, Mr. STARK, Mr. STRICKLAND, Mrs. TAUSCHER, Mr. 

TIERNEY, Mr. UDALL of New Mexico, Ms. VELA ́ZQUEZ, Mr. WALSH, Mr. 

WAMP, Mr. WAXMAN, Mr. WEXLER, and Ms. WOOLSEY) introduced the 

following bill; which was referred to the Committee on Energy and Commerce, and in addition to the Committees on Ways and Means and Education and the Workforce, 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 
2

•HR 1910 IH 

A BILL

To prohibit discrimination on the basis of genetic information 

with respect to health insurance.

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 AND TABLE OF CONTENTS. 

4 (a) SHORT TITLE.—This title may be cited as the 

5 ‘‘Genetic Nondiscrimination in Health Insurance and Em6 ployment Act’’.

7 (b) TABLE OF CONTENTS.—The table of contents is 

8 as follows:

Sec. 1. Short title and table of contents. 

TITLE I—PROHIBITION OF HEALTH INSURANCE DISCRIMINATION 

ON THE BASIS OF PROTECTED GENETIC INFORMATION 

Sec. 101. Amendments to Employee Retirement Income Security Act of 1974. 

Sec. 102. Amendments to the Public Health Service Act. 

Sec. 103. Amendments to Internal Revenue Code of 1986. 

Sec. 104. Amendments to Title XVIII of the Social Security Act relating to 

Medigap. 

TITLE II—PROHIBITION OF EMPLOYMENT DISCRIMINATION ON 

THE BASIS OF PROTECTED GENETIC INFORMATION 

Sec. 201. Definitions. 

Sec. 202. Employer practices. 

Sec. 203. Employment agency practices. 

Sec. 204. Labor organization practices. 

Sec. 205. Training programs. 

Sec. 206. Maintenance and disclosure of protected genetic information. 

Sec. 207. Civil action. 

Sec. 208. Exceptions; rules of construction. 

Sec. 209. Authorization of appropriations. 

Sec. 210. Effective date. 

TITLE III—MISCELLANEOUS PROVISIONS 

Sec. 301. Severability.
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•HR 1910 IH 

1 TITLE I—PROHIBITION OF 

2 HEALTH INSURANCE DIS3 CRIMINATION ON THE BASIS 

4 OF PROTECTED GENETIC IN5 FORMATION 

6 SEC. 101. AMENDMENTS TO EMPLOYEE RETIREMENT IN7 COME SECURITY ACT OF 1974. 

8 (a) PROHIBITION OF HEALTH INSURANCE DISCRIMI9 NATION ON THE BASIS OF GENETIC SERVICES OR PRO10 TECTED GENETIC INFORMATION.—

11 (1) NO ENROLLMENT RESTRICTION FOR GE12 NETIC SERVICES.—Section 702(a)(1)(F) of the Em13 ployee Retirement Income Security Act of 1974 (29 

14 U.S.C. 1182(a)(1)(F)) is amended by inserting be15 fore the period ‘‘(or information about a request for 

16 or the receipt of genetic services by such individual 

17 or family member of such individual)’’. 

18 (2) NO DISCRIMINATION IN GROUP RATE BASED

19 ON PROTECTED GENETIC INFORMATION.—

20 (A) IN GENERAL.—Subpart B of part 7 of 

21 subtitle B of title I of the Employee Retirement 

22 Income Security Act of 1974 (29 U.S.C. 1185 

23 et seq.) is amended by adding at the end the 

24 following: 
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1 ‘‘SEC. 714. PROHIBITING DISCRIMINATION AGAINST 

2 GROUPS ON THE BASIS OF PROTECTED GE3 NETIC INFORMATION. 

4 ‘‘A group health plan, and a health insurance issuer 

5 offering group health insurance coverage in connection 

6 with a group health plan, shall not deny eligibility to a 

7 group or adjust premium or contribution rates for a group 

8 on the basis of protected genetic information concerning 

9 an individual in the group (or information about a request 

10 for or the receipt of genetic services by such individual 

11 or family member of such individual).’’. 

12 (B) CONFORMING AMENDMENTS.—

13 (i) Section 702(b)(2)(A) of the Em14 ployee Retirement Income Security Act of 

15 1974 (29 U.S.C. 1182(b)) is amended to 

16 read as follows: 

17 ‘‘(A) to restrict the amount that an em18 ployer may be charged for coverage under a 

19 group health plan, except as provided in section 

20 714; or’’.

21 (ii) Section 732(a) of the Employee 

22 Retirement Income Security Act of 1974 

23 (29 U.S.C. 1191a(a)) is amended by strik24 ing ‘‘section 711’’ and inserting ‘‘sub25 sections (a)(1)(F), (b) (with respect to 

26 cases relating to genetic information or in-
5

•HR 1910 IH 

1 formation about a request or receipt of ge2 netic services by an individual or family 

3 member of such individual), (c), (d), (e), 

4 (f), or (g) of section 702, section 711 and 

5 section 714’’. 

6 (b) LIMITATIONS ON GENETIC TESTING AND ON

7 COLLECTION AND DISCLOSURE OF PROTECTED GENETIC

8 INFORMATION.—Section 702 of the Employee Retirement 

9 Income Security Act of 1974 (29 U.S.C. 1182) is amended 

10 by adding at the end the following: 

11 ‘‘(c) GENETIC TESTING.—

12 ‘‘(1) LIMITATION ON REQUESTING OR REQUIR13 ING GENETIC TESTING.—A group health plan, or a 

14 health insurance issuer offering health insurance 

15 coverage in connection with a group health plan, 

16 shall not request or require an individual or a family 

17 member of such individual to undergo a genetic test. 

18 ‘‘(2) RULE OF CONSTRUCTION.—Nothing in 

19 this part shall be construed to limit the authority of 

20 a health care professional, who is providing treat21 ment with respect to an individual and who is em22 ployed by a group health plan or a health insurance 

23 issuer, to request that such individual or family 

24 member of such individual undergo a genetic test. 

25 Such a health care professional shall not require 
6

•HR 1910 IH 

1 that such individual or family member undergo a ge2 netic test. 

3 ‘‘(3) CERTAIN TESTS.—The conducting of met4 abolic tests that are not intended to reveal protected 

5 genetic information shall not be considered a viola6 tion of the preceding provisions of this subsection re7 gardless of the results of the tests. Test results that 

8 are protected genetic information shall be subject to 

9 the applicable provisions of this part. 

10 ‘‘(d) COLLECTION OF PROTECTED GENETIC INFOR11 MATION.—Except as provided in subsections (f) and (g), 

12 a group health plan, or a health insurance issuer offering 

13 health insurance coverage in connection with a group 

14 health plan, shall not request, require, collect, or purchase 

15 protected genetic information concerning an individual (or 

16 information about a request for or the receipt of genetic 

17 services by such individual or family member of such indi18 vidual). 

19 ‘‘(e) DISCLOSURE OF PROTECTED GENETIC INFOR20 MATION.—A group health plan, or a health insurance 

21 issuer offering health insurance coverage in connection 

22 with a group health plan, shall not disclose protected ge23 netic information about an individual (or information 

24 about a request for or the receipt of genetic services by 

25 such individual or family member of such individual) to—
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•HR 1910 IH 

1 ‘‘(1) any entity that is a member of the same 

2 controlled group as such issuer or plan sponsor of 

3 such group health plan; 

4 ‘‘(2) any other group health plan or health in5 surance issuer or any insurance agent, third party 

6 administrator, or other person subject to regulation 

7 under State insurance laws;

8 ‘‘(3) the Medical Information Bureau or any 

9 other person that collects, compiles, publishes, or 

10 otherwise disseminates insurance information; 

11 ‘‘(4) the individual’s employer or any plan spon12 sor; or 

13 ‘‘(5) any other person the Secretary may speci14 fy in regulations. 

15 ‘‘(f) INFORMATION FOR PAYMENT FOR GENETIC

16 SERVICES.—

17 ‘‘(1) IN GENERAL.—With respect to payment 

18 for genetic services conducted concerning an indi19 vidual or the coordination of benefits, a group health 

20 plan, or a health insurance issuer offering group 

21 health insurance coverage in connection with a group 

22 health plan, may request that the individual provide 

23 the plan or issuer with evidence that such services 

24 were performed. 
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1 ‘‘(2) RULE OF CONSTRUCTION.—Nothing in 

2 paragraph (1) shall be construed to—

3 ‘‘(A) permit a group health plan or health 

4 insurance issuer to request (or require) the re5 sults of the services referred to in such para6 graph; or 

7 ‘‘(B) require that a group health plan or 

8 health insurance issuer make payment for serv9 ices described in such paragraph where the in10 dividual involved has refused to provide evi11 dence of the performance of such services pur12 suant to a request by the plan or issuer in ac13 cordance with such paragraph. 

14 ‘‘(g) INFORMATION FOR PAYMENT OF OTHER

15 CLAIMS.—With respect to the payment of claims for bene16 fits other than genetic services, a group health plan, or 

17 a health insurance issuer offering group health insurance 

18 coverage in connection with a group health plan, may re19 quest that an individual provide protected genetic informa20 tion so long as such information—

21 ‘‘(1) is used solely for the payment of a claim; 

22 ‘‘(2) is limited to information that is directly re23 lated to and necessary for the payment of such claim 

24 and the claim would otherwise be denied but for the 

25 protected genetic information; and 
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•HR 1910 IH 

1 ‘‘(3) is used only by an individual (or individ2 uals) within such plan or issuer who needs access to 

3 such information for purposes of payment of a 

4 claim. 

5 ‘‘(h) RULES OF CONSTRUCTION.—

6 ‘‘(1) COLLECTION OR DISCLOSURE AUTHORIZED

7 BY INDIVIDUAL.—The provisions of subsections (d) 

8 (regarding collection) and (e) shall not apply to an 

9 individual if the individual (or legal representative of 

10 the individual) provides prior, knowing, voluntary, 

11 and written authorization for the collection or disclo12 sure of protected genetic information. 

13 ‘‘(2) DISCLOSURE FOR HEALTH CARE TREAT14 MENT.—Nothing in this section shall be construed to 

15 limit or restrict the disclosure of protected genetic 

16 information from a health care provider to another 

17 health care provider for the purpose of providing 

18 health care treatment to the individual involved. 

19 ‘‘(i) DEFINITIONS.—In this section: 

20 ‘‘(1) CONTROLLED GROUP.—The term ‘con21 trolled group’ means any group treated as a single 

22 employer under subsection (b), (c), (m), or (o) of 

23 section 414 of the Internal Revenue Code of 1986. 

24 ‘‘(2) GROUP HEALTH PLAN, HEALTH INSUR25 ANCE ISSUER.—The terms ‘group health plan’ and 
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•HR 1910 IH 

1 ‘health insurance issuer’ include a third party ad2 ministrator or other person acting for or on behalf 

3 of such plan or issuer.’’. 

4 (c) ENFORCEMENT.—Section 502 (29 U.S.C. 1132) 

5 is amended by adding at the end the following: 

6 ‘‘(n) VIOLATION OF GENETIC DISCRIMINATION OR

7 GENETIC DISCLOSURE PROVISIONS.—

8 ‘‘(1) IN GENERAL.—In any action under this 

9 section against any administrator of a group health 

10 plan, or health insurance issuer offering group 

11 health insurance coverage in connection with a group 

12 health plan (including any third party administrator 

13 or other person acting for or on behalf of such plan 

14 or issuer) alleging a violation of subsection 

15 (a)(1)(F), (b) (with respect to cases relating to ge16 netic information or information about a request or 

17 receipt of genetic services by an individual or family 

18 member of such individual), (c), (d), (e), (f), or (g) 

19 of section 702, or section 714, the court may award 

20 any appropriate legal or equitable relief. Such relief 

21 may include a requirement for the payment of attor22 ney’s fees and costs, including the costs of expert 

23 witnesses. 

24 ‘‘(2) CIVIL PENALTY.—In any action described 

25 in paragraph (1), the Secretary may, to vindicate 
11

•HR 1910 IH 

1 the public interest, assess a civil penalty against the 

2 defendant in an amount—

3 ‘‘(A) not exceeding $50,000 for a first vio4 lation, and 

5 ‘‘(B) not exceeding $100,000 for any sub6 sequent violation.

7 Any such relief awarded shall be paid into the gen8 eral fund of the Treasury.’’. 

9 (d) PREEMPTION.—Section 731 of the Employee Re10 tirement Income Security Act of 1974 (29 U.S.C. 1191) 

11 is amended—

12 (1) in subsection (a)(1), by inserting ‘‘or (e)’’ 

13 after ‘‘subsection (b)’’; and 

14 (2) by adding at the end the following: 

15 ‘‘(e) SPECIAL RULE IN CASE OF GENETIC INFORMA16 TION.—With respect to group health insurance coverage 

17 offered by a health insurance issuer, the provisions of this 

18 part relating to genetic information (including information 

19 about a request for or the receipt of genetic services by 

20 an individual or a family member of such individual) shall 

21 not be construed to supersede any provision of State law 

22 which establishes, implements, or continues in effect a 

23 standard, requirement, or remedy that more completely—

24 ‘‘(1) protects the confidentiality of genetic in25 formation (including information about a request for 
12

•HR 1910 IH 

1 or the receipt of genetic services by an individual or 

2 a family member of such individual) or the privacy 

3 of an individual or a family member of the individual 

4 with respect to genetic information (including infor5 mation about a request for or the receipt of genetic 

6 services by an individual or a family member of such 

7 individual) than does this part; or 

8 ‘‘(2) prohibits discrimination on the basis of ge9 netic information than does this part.’’. 

10 (e) DEFINITIONS.—Section 733(d) of the Employee 

11 Retirement Income Security Act of 1974 (29 U.S.C. 

12 1191b(d)) is amended by adding at the end the following: 

13 ‘‘(5) FAMILY MEMBER.—The term ‘family 

14 member’ means with respect to an individual—

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

16 ‘‘(B) a dependent child of the individual, 

17 including a child who is born to or placed for 

18 adoption with the individual; or 

19 ‘‘(C) any other individuals related by blood 

20 to the individual or to the spouse or child de21 scribed in subparagraph (A) or (B). 

22 ‘‘(6) GENETIC INFORMATION.—The term ‘ge23 netic information’ means information about genes, 

24 gene products, or inherited characteristics that may 

25 derive from an individual or a family member of 
13

•HR 1910 IH 

1 such individual (including information about a re2 quest for or the receipt of genetic services by such 

3 individual or family member of such individual). 

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

5 services’ means health services, including genetic 

6 tests, provided to obtain, assess, or interpret genetic 

7 information for diagnostic and therapeutic purposes, 

8 and for genetic education and counseling. 

9 ‘‘(8) GENETIC TEST.—The term ‘genetic test’ 

10 means the analysis of human DNA, RNA, chro11 mosomes, proteins, or metabolites that detects 

12 genotypes, mutations, or chromosomal changes. 

13 ‘‘(9) PROTECTED GENETIC INFORMATION.—

14 ‘‘(A) IN GENERAL.—Except as provided in 

15 subparagraph (B), the term ‘protected genetic 

16 information’ means—

17 ‘‘(i) information about an individual’s 

18 genetic tests; 

19 ‘‘(ii) information about genetic tests 

20 of family members of the individual; and 

21 ‘‘(iii) information about the occur22 rence of a disease or disorder in family 

23 members. 

24 ‘‘(B) LIMITATIONS.—The term ‘protected 

25 genetic information’ shall not include—
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•HR 1910 IH 

1 ‘‘(i) information about the sex or age 

2 of the individual; 

3 ‘‘(ii) information about chemical, 

4 blood, or urine analyses of the individual, 

5 unless these analyses are genetic tests; or 

6 ‘‘(iii) information about physical 

7 exams of the individual, and other informa8 tion that indicates the current health sta9 tus of the individual.’’. 

10 (f) AMENDMENT CONCERNING SUPPLEMENTAL EX11 CEPTED BENEFITS.—Section 732(c)(3) of the Employee 

12 Retirement Income Security Act of 1974 (29 U.S.C. 

13 1191a(c)(3)) is amended by inserting ‘‘, other than the 

14 requirements of subsections (a)(1)(F), (b) (in cases relat15 ing to genetic information or information about a request 

16 for or the receipt of genetic services by an individual or 

17 a family member of such individual), (c), (d), (e), (f) and 

18 (g) of section 702 and section 714,’’ after ‘‘The require19 ments of this part’’. 

20 (g) EFFECTIVE DATE.—

21 (1) IN GENERAL.—Except as provided in this 

22 section, this section and the amendments made by 

23 this section shall apply with respect to group health 

24 plans for plan years beginning after October 1, 

25 2005. 
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1 (2) SPECIAL RULE FOR COLLECTIVE BAR2 GAINING AGREEMENTS.—In the case of a group 

3 health plan maintained pursuant to one or more col4 lective bargaining agreements between employee rep5 resentatives and one or more employers ratified be6 fore the date of the enactment of this Act, this sec7 tion and the amendments made by this section shall 

8 not apply to plan years beginning before the later 

9 of—

10 (A) the date on which the last of the col11 lective bargaining agreements relating to the 

12 plan terminates (determined without regard to 

13 any extension thereof agreed to after the date 

14 of the enactment of this Act), or 

15 (B) October 1, 2005. 

16 For purposes of subparagraph (A), any plan amend17 ment made pursuant to a collective bargaining 

18 agreement relating to the plan which amends the 

19 plan solely to conform to any requirement of the 

20 amendments made by this section shall not be treat21 ed as a termination of such collective bargaining 

22 agreement. 
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1 SEC. 102. AMENDMENTS TO THE PUBLIC HEALTH SERVICE 

2 ACT. 

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

5 (1) PROHIBITION OF HEALTH INSURANCE DIS6 CRIMINATION ON THE BASIS OF PROTECTED GE7 NETIC INFORMATION OR GENETIC SERVICES.—

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: ‘‘(or information 

13 about a request for or the receipt of genetic 

14 services by an individual or a family member of 

15 such individual)’’. 

16 (B) NO DISCRIMINATION IN GROUP RATE

17 BASED ON PROTECTED GENETIC INFORMA18 TION.—

19 (i) IN GENERAL.—Subpart 2 of part 

20 A of title XXVII of the Public Health 

21 Service (42 U.S.C. 300gg–4 et seq.) is 

22 amended by adding at the end the fol23 lowing: 
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•HR 1910 IH 

1 ‘‘SEC. 2707. PROHIBITING DISCRIMINATION AGAINST 

2 GROUPS ON THE BASIS OF PROTECTED GE3 NETIC INFORMATION. 

4 ‘‘A group health plan, and a health insurance issuer 

5 offering group health insurance coverage in connection 

6 with a group health plan, shall not deny eligibility to a 

7 group or adjust premium or contribution rates for a group 

8 on the basis of protected genetic information concerning 

9 an individual in the group (or information about a request 

10 for or the receipt of genetic services by such individual 

11 or family member of such individual).’’. 

12 (ii) CONFORMING AMENDMENTS.—

13 (I) Section 2702(b)(2)(A) of the 

14 Public Health Service Act (42 U.S.C. 

15 300gg–1(b)(2)(A)) is amended to read 

16 as follows:

17 ‘‘(A) to restrict the amount that an em18 ployer may be charged for coverage under a 

19 group health plan, except as provided in section 

20 2707; or’’.

21 (II) Section 2721(a) of the Pub22 lic Health Service Act (42 U.S.C. 

23 300gg–21(a)) is amended by inserting 

24 ‘‘(other than subsections (a)(1)(F), 

25 (b) (with respect to cases relating to 

26 genetic information or information 
18

•HR 1910 IH 

1 about a request or receipt of genetic 

2 services by an individual or family 

3 member of such individual), (c), (d), 

4 (e), (f), or (g) of section 2702 and 

5 section 2707)’’ after ‘‘subparts 1 and 

6 3’’. 

7 (2) LIMITATIONS ON GENETIC TESTING AND ON

8 COLLECTION AND DISCLOSURE OF PROTECTED GE9 NETIC INFORMATION.—Section 2702 of the Public 

10 Health Service Act (42 U.S.C. 300gg–1) is amended 

11 by adding at the end the following: 

12 ‘‘(c) GENETIC TESTING.—

13 ‘‘(1) LIMITATION ON REQUESTING OR REQUIR14 ING GENETIC TESTING.—A group health plan, or a 

15 health insurance issuer offering health insurance 

16 coverage in connection with a group health plan, 

17 shall not request or require an individual or a family 

18 member of such individual to undergo a genetic test. 

19 ‘‘(2) RULE OF CONSTRUCTION.—Nothing in 

20 this title shall be construed to limit the authority of 

21 a health care professional, who is providing treat22 ment with respect to an individual and who is em23 ployed by a group health plan or a health insurance 

24 issuer, to request that such individual or family 

25 member of such individual undergo a genetic test. 
19

•HR 1910 IH 

1 Such a health care professional shall not require 

2 that such individual or family member undergo a ge3 netic test. 

4 ‘‘(3) CERTAIN TESTS.—The conducting of met5 abolic tests that are not intended to reveal protected 

6 genetic information shall not be considered a viola7 tion of the preceding provisions of this subsection re8 gardless of the results of the tests. Test results that 

9 are protected genetic information shall be subject to 

10 the applicable provisions of this title. 

11 ‘‘(d) COLLECTION OF PROTECTED GENETIC INFOR12 MATION.—Except as provided in subsections (f) and (g), 

13 a group health plan, or a health insurance issuer offering 

14 health insurance coverage in connection with a group 

15 health plan, shall not request, require, collect, or purchase 

16 protected genetic information concerning an individual (or 

17 information about a request for or the receipt of genetic 

18 services by such individual or family member of such indi19 vidual). 

20 ‘‘(e) DISCLOSURE OF PROTECTED GENETIC INFOR21 MATION.—A group health plan, or a health insurance 

22 issuer offering health insurance coverage in connection 

23 with a group health plan, shall not disclose protected ge24 netic information about an individual (or information 
20

•HR 1910 IH 

1 about a request for or the receipt of genetic services by 

2 such individual or family member of such individual) to—

3 ‘‘(1) any entity that is a member of the same 

4 controlled group as such issuer or plan sponsor of 

5 such group health plan; 

6 ‘‘(2) any other group health plan or health in7 surance issuer or any insurance agent, third party 

8 administrator, or other person subject to regulation 

9 under State insurance laws;

10 ‘‘(3) the Medical Information Bureau or any 

11 other person that collects, compiles, publishes, or 

12 otherwise disseminates insurance information; 

13 ‘‘(4) the individual’s employer or any plan spon14 sor; or 

15 ‘‘(5) any other person the Secretary may speci16 fy in regulations. 

17 ‘‘(f) INFORMATION FOR PAYMENT FOR GENETIC

18 SERVICES.—

19 ‘‘(1) IN GENERAL.—With respect to payment 

20 for genetic services conducted concerning an indi21 vidual or the coordination of benefits, a group health 

22 plan, or a health insurance issuer offering group 

23 health insurance coverage in connection with a group 

24 health plan, may request that the individual provide 
21

•HR 1910 IH 

1 the plan or issuer with evidence that such services 

2 were performed. 

3 ‘‘(2) RULE OF CONSTRUCTION.—Nothing in 

4 paragraph (1) shall be construed to—

5 ‘‘(A) permit a group health plan or health 

6 insurance issuer to request (or require) the re7 sults of the services referred to in such para8 graph; or 

9 ‘‘(B) require that a group health plan or 

10 health insurance issuer make payment for serv11 ices described in such paragraph where the in12 dividual involved has refused to provide evi13 dence of the performance of such services pur14 suant to a request by the plan or issuer in ac15 cordance with such paragraph. 

16 ‘‘(g) INFORMATION FOR PAYMENT OF OTHER

17 CLAIMS.—With respect to the payment of claims for bene18 fits other than genetic services, a group health plan, or 

19 a health insurance issuer offering group health insurance 

20 coverage in connection with a group health plan, may re21 quest that an individual provide protected genetic informa22 tion so long as such information—

23 ‘‘(1) is used solely for the payment of a claim; 

24 ‘‘(2) is limited to information that is directly re25 lated to and necessary for the payment of such claim 
22

•HR 1910 IH 

1 and the claim would otherwise be denied but for the 

2 protected genetic information; and 

3 ‘‘(3) is used only by an individual (or individ4 uals) within such plan or issuer who needs access to 

5 such information for purposes of payment of a 

6 claim. 

7 ‘‘(h) RULES OF CONSTRUCTION.—

8 ‘‘(1) COLLECTION OR DISCLOSURE AUTHORIZED

9 BY INDIVIDUAL.—The provisions of subsections (d) 

10 (regarding collection) and (e) shall not apply to an 

11 individual if the individual (or legal representative of 

12 the individual) provides prior, knowing, voluntary, 

13 and written authorization for the collection or disclo14 sure of protected genetic information. 

15 ‘‘(2) DISCLOSURE FOR HEALTH CARE TREAT16 MENT.—Nothing in this section shall be construed to 

17 limit or restrict the disclosure of protected genetic 

18 information from a health care provider to another 

19 health care provider for the purpose of providing 

20 health care treatment to the individual involved. 

21 ‘‘(i) DEFINITIONS.—In this section: 

22 ‘‘(1) CONTROLLED GROUP.—The term ‘con23 trolled group’ means any group treated as a single 

24 employer under subsection (b), (c), (m), or (o) of 

25 section 414 of the Internal Revenue Code of 1986.
23

•HR 1910 IH 

1 ‘‘(2) GROUP HEALTH PLAN, HEALTH INSUR2 ANCE ISSUER.—The terms ‘group health plan’ and 

3 ‘health insurance issuer’ include a third party ad4 ministrator or other person acting for or on behalf 

5 of such plan or issuer.’’. 

6 (3) DEFINITIONS.—Section 2791(d) of the Pub7 lic Health Service Act (42 U.S.C. 300gg–91(d)) is 

8 amended by adding at the end the following new 

9 paragraphs: 

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

11 member’ means with respect to an individual—

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

13 ‘‘(B) a dependent child of the individual, 

14 including a child who is born to or placed for 

15 adoption with the individual; and 

16 ‘‘(C) all other individuals related by blood 

17 to the individual or the spouse or child de18 scribed in subparagraph (A) or (B). 

19 ‘‘(16) GENETIC INFORMATION.—The term ‘ge20 netic information’ means information about genes, 

21 gene products, or inherited characteristics that may 

22 derive from an individual or a family member of 

23 such individual (including information about a re24 quest for or the receipt of genetic services by such 

25 individual or family member of such individual). 
24

•HR 1910 IH 

1 ‘‘(17) GENETIC SERVICES.—The term ‘genetic 

2 services’ means health services, including genetic 

3 tests, provided to obtain, assess, or interpret genetic 

4 information for diagnostic and therapeutic purposes, 

5 and for genetic education and counselling. 

6 ‘‘(18) GENETIC TEST.—The term ‘genetic test’ 

7 means the analysis of human DNA, RNA, chro8 mosomes, proteins, or metabolites that detects 

9 genotypes, mutations, or chromosomal changes.

10 ‘‘(19) PROTECTED GENETIC INFORMATION.—

11 ‘‘(A) IN GENERAL.—Except as provided in 

12 subparagraph (B), the term ‘protected genetic 

13 information’ means—

14 ‘‘(i) information about an individual’s 

15 genetic tests; 

16 ‘‘(ii) information about genetic tests 

17 of family members of the individual; and 

18 ‘‘(iii) information about the occur19 rence of a disease or disorder in family 

20 members.’’. 

21 ‘‘(B) LIMITATIONS.—The term ‘protected 

22 genetic information’ shall not include—

23 ‘‘(i) information about the sex or age 

24 of the individual; 
25

•HR 1910 IH 

1 ‘‘(ii) information about chemical, 

2 blood, or urine analyses of the individual, 

3 unless these analyses are genetic tests; or 

4 ‘‘(iii) information about physical 

5 exams of the individual, and other informa6 tion that indicates the current health sta7 tus of the individual.’’. 

8 (b) AMENDMENT RELATING TO THE INDIVIDUAL

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

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

11 seq.) is amended—

12 (1) by redesignating such subpart as subpart 2; 

13 and 

14 (2) by adding at the end the following: 

15 ‘‘SEC. 2753. PROHIBITION OF HEALTH INSURANCE DIS16 CRIMINATION AGAINST INDIVIDUALS ON THE 

17 BASIS OF PROTECTED GENETIC INFORMA18 TION. 

19 ‘‘(a) INELIGIBILITY TO ENROLL.—A health insur20 ance issuer offering health insurance coverage in the indi21 vidual market shall not establish rules for eligibility to en22 roll in individual health insurance coverage that are based 

23 on protected genetic information concerning the individual 

24 (or information about a request for or the receipt of ge-
26

•HR 1910 IH 

1 netic services by such individual or family member of such 

2 individual). 

3 ‘‘(b) IN PREMIUM RATES.—A health insurance issuer 

4 offering health insurance coverage in the individual mar5 ket shall not adjust premium rates on the basis of pro6 tected genetic information concerning an individual (or in7 formation about a request for or the receipt of genetic 

8 services by such individual or family member of such indi9 vidual). 

10 ‘‘SEC. 2754. LIMITATIONS ON GENETIC TESTING AND ON 

11 COLLECTION AND DISCLOSURE OF PRO12 TECTED GENETIC INFORMATION. 

13 ‘‘(a) GENETIC TESTING.—

14 ‘‘(1) LIMITATION ON REQUESTING OR REQUIR15 ING GENETIC TESTING.—A health insurance issuer 

16 offering health insurance coverage in the individual 

17 market shall not request or require an individual or 

18 a family member of such individual to undergo a ge19 netic test. 

20 ‘‘(2) RULE OF CONSTRUCTION.—Nothing in 

21 this title shall be construed to limit the authority of 

22 a health care professional, who is providing treat23 ment with respect to an individual and who is em24 ployed by a group health plan or a health insurance 

25 issuer, to request that such individual or family 
27

•HR 1910 IH 

1 member of such individual undergo a genetic test. 

2 Such a health care professional shall not require 

3 that such individual or family member undergo a ge4 netic test. 

5 ‘‘(3) CERTAIN TESTS.—The conducting of met6 abolic tests that are not intended to reveal protected 

7 genetic information shall not be considered a viola8 tion of the preceding provisions of this subsection re9 gardless of the results of the tests. Test results that 

10 are protected genetic information shall be subject to 

11 the applicable provisions of this title. 

12 ‘‘(b) COLLECTION OF PROTECTED GENETIC INFOR13 MATION.—Except as provided in subsections (d) and (e), 

14 a health insurance issuer offering health insurance cov15 erage in the individual market shall not request, require, 

16 collect, or purchase protected genetic information con17 cerning an individual (or information about a request for 

18 or the receipt of genetic services by such individual or fam19 ily member of such individual). 

20 ‘‘(c) DISCLOSURE OF PROTECTED GENETIC INFOR21 MATION.—A health insurance issuer offering health insur22 ance coverage in the individual market shall not disclose 

23 protected genetic information about an individual (or in24 formation about a request for or the receipt of genetic 
28

•HR 1910 IH 

1 services by such individual or family member of such indi2 vidual) to—

3 ‘‘(1) any entity that is a member of the same 

4 controlled group as such issuer or plan sponsor of 

5 such group health plan;

6 ‘‘(2) any other group health plan or health in7 surance issuer or any insurance agent, third party 

8 administrator, or other person subject to regulation 

9 under State insurance laws;

10 ‘‘(3) the Medical Information Bureau or any 

11 other person that collects, compiles, publishes, or 

12 otherwise disseminates insurance information; 

13 ‘‘(4) the individual’s employer or any plan spon14 sor; or 

15 ‘‘(5) any other person the Secretary may speci16 fy in regulations. 

17 ‘‘(d) INFORMATION FOR PAYMENT FOR GENETIC

18 SERVICES.—

19 ‘‘(1) IN GENERAL.—With respect to payment 

20 for genetic services conducted concerning an indi21 vidual or the coordination of benefits, a health insur22 ance issuer offering health insurance coverage in the 

23 individual market may request that the individual 

24 provide the plan or issuer with evidence that such 

25 services were performed. 
29

•HR 1910 IH 

1 ‘‘(2) RULE OF CONSTRUCTION.—Nothing in 

2 paragraph (1) shall be construed to—

3 ‘‘(A) permit a health insurance issuer to 

4 request (or require) the results of the services 

5 referred to in such paragraph; or 

6 ‘‘(B) require that a health insurance issuer 

7 make payment for services described in such 

8 paragraph where the individual involved has re9 fused to provide evidence of the performance of 

10 such services pursuant to a request by the plan 

11 or issuer in accordance with such paragraph. 

12 ‘‘(e) INFORMATION FOR PAYMENT OF OTHER

13 CLAIMS.—With respect to the payment of claims for bene14 fits other than genetic services, a health insurance issuer 

15 offering health insurance coverage in the individual mar16 ket may request that an individual provide protected ge17 netic information so long as such information—

18 ‘‘(1) is used solely for the payment of a claim; 

19 ‘‘(2) is limited to information that is directly re20 lated to and necessary for the payment of such claim 

21 and the claim would otherwise be denied but for the 

22 protected genetic information; and

23 ‘‘(3) is used only by an individual (or individ24 uals) within such plan or issuer who needs access to 
30

•HR 1910 IH 

1 such information for purposes of payment of a 

2 claim. 

3 ‘‘(f) RULES OF CONSTRUCTION.—

4 ‘‘(1) COLLECTION OR DISCLOSURE AUTHORIZED

5 BY INDIVIDUAL.—The provisions of subsections (c) 

6 (regarding collection) and (d) shall not apply to an 

7 individual if the individual (or legal representative of 

8 the individual) provides prior, knowing, voluntary, 

9 and written authorization for the collection or disclo10 sure of protected genetic information. 

11 ‘‘(2) DISCLOSURE FOR HEALTH CARE TREAT12 MENT.—Nothing in this section shall be construed to 

13 limit or restrict the disclosure of protected genetic 

14 information from a health care provider to another 

15 health care provider for the purpose of providing 

16 health care treatment to the individual involved. 

17 ‘‘(g) DEFINITIONS.—In this section: 

18 ‘‘(1) CONTROLLED GROUP.—The term ‘con19 trolled group’ means any group treated as a single 

20 employer under subsection (b), (c), (m), or (o) of 

21 section 414 of the Internal Revenue Code of 1986. 

22 ‘‘(2) GROUP HEALTH PLAN, HEALTH INSUR23 ANCE ISSUER.—The terms ‘group health plan’ and 

24 ‘health insurance issuer’ include a third party ad-
31

•HR 1910 IH 

1 ministrator or other person acting for or on behalf 

2 of such plan or issuer.’’. 

3 (c) ENFORCEMENT.—

4 (1) GROUP PLANS.—Section 2722 of the Public 

5 Health Service Act (42 U.S.C. 300gg–22) is amend6 ed by adding at the end the following: 

7 ‘‘(c) VIOLATION OF GENETIC DISCRIMINATION OR

8 GENETIC DISCLOSURE PROVISIONS.—

9 ‘‘(1) IN GENERAL.—In any action under this 

10 section against any administrator of a group health 

11 plan, or health insurance issuer offering group 

12 health insurance coverage in connection with a group 

13 health plan (including any third party administrator 

14 or other person acting for or on behalf of such plan 

15 or issuer) alleging a violation of subsections 

16 (a)(1)(F), (b) (with respect to cases relating to ge17 netic information or information about a request or 

18 receipt of genetic services by an individual or family 

19 member of such individual), (c), (d), (e), (f), or (g) 

20 of section 2702 and section 2707 the court may 

21 award any appropriate legal or equitable relief. Such 

22 relief may include a requirement for the payment of 

23 attorney’s fees and costs, including the costs of ex24 pert witnesses. 
32

•HR 1910 IH 

1 ‘‘(2) CIVIL PENALTY.—In any action described 

2 in paragraph (1), the Secretary may, to vindicate 

3 the public interest, assess a civil penalty against the 

4 defendant in an amount—

5 ‘‘(A) not exceeding $50,000 for a first vio6 lation, and 

7 ‘‘(B) not exceeding $100,000 for any sub8 sequent violation. 

9 Any such relief awarded shall be paid into the gen10 eral fund of the Treasury.’’.

11 (2) INDIVIDUAL PLANS.—Section 2761 of the 

12 Public Health Service Act (42 U.S.C. 300gg–45) is 

13 amended by adding at the end the following: 

14 ‘‘(c) VIOLATION OF GENETIC DISCRIMINATION OR

15 GENETIC DISCLOSURE PROVISIONS.—

16 ‘‘(1) IN GENERAL.—In any action under this 

17 section against any health insurance issuer offering 

18 health insurance coverage in the individual market 

19 (including any other person acting for or on behalf 

20 of such issuer) alleging a violation of sections 2753 

21 and 2754 the court in which the action is com22 menced may award any appropriate legal or equi23 table relief. Such relief may include a requirement 

24 for the payment of attorney’s fees and costs, includ25 ing the costs of expert witnesses. 
33

•HR 1910 IH 

1 ‘‘(2) CIVIL PENALTY.—In any action described 

2 in paragraph (1), the Secretary may, to vindicate 

3 the public interest, assess a civil penalty against the 

4 defendant in an amount—

5 ‘‘(A) not exceeding $50,000 for a first vio6 lation, and 

7 ‘‘(B) not exceeding $100,000 for any sub8 sequent violation. 

9 Any such relief awarded shall be paid into the gen10 eral fund of the Treasury.’’. 

11 (d) PREEMPTION.—

12 (1) GROUP MARKET.—Section 2723 of the Pub13 lic Health Service Act (42 U.S.C. 300gg–23) is 

14 amended—

15 (A) in subsection (a)(1), by inserting ‘‘or 

16 (e)’’ after ‘‘subsection (b)’’; and 

17 (B) by adding at the end the following: 

18 ‘‘(e) SPECIAL RULE IN CASE OF GENETIC INFORMA19 TION.—With respect to group health insurance coverage 

20 offered by a health insurance issuer, the provisions of this 

21 part relating to genetic information (including information 

22 about a request for or the receipt of genetic services by 

23 an individual or a family member of such individual) shall 

24 not be construed to supersede any provision of State law 
34

•HR 1910 IH 

1 which establishes, implements, or continues in effect a 

2 standard, requirement, or remedy that more completely—

3 ‘‘(1) protects the confidentiality of genetic in4 formation (including information about a request for 

5 or the receipt of genetic services by an individual or 

6 a family member of such individual) or the privacy 

7 of an individual or a family member of the individual 

8 with respect to genetic information (including infor9 mation about a request for or the receipt of genetic 

10 services by an individual or a family member of such 

11 individual) than does this part; or 

12 ‘‘(2) prohibits discrimination on the basis of ge13 netic information than does this part.’’. 

14 (2) INDIVIDUAL MARKET.—Section 2762 of the 

15 Public Health Service Act (42 U.S.C. 300gg–46) is 

16 amended—

17 (A) in subsection (a), by inserting ‘‘and ex18 cept as provided in subsection (c),’’ after ‘‘Sub19 ject to subsection (b),’’; and 

20 (B) by adding at the end the following: 

21 ‘‘(c) SPECIAL RULE IN CASE OF GENETIC INFORMA22 TION.—With respect to individual health insurance cov23 erage offered by a health insurance issuer, the provisions 

24 of this part (or part C insofar as it applies to this part) 

25 relating to genetic information (including information 
35

•HR 1910 IH 

1 about a request for or the receipt of genetic services by 

2 an individual or a family member of such individual) shall 

3 not be construed to supersede any provision of State law 

4 (as defined in section 2723(d)) which establishes, imple5 ments, or continues in effect a standard, requirement, or 

6 remedy that more completely—

7 ‘‘(1) protects the confidentiality of genetic in8 formation (including information about a request for 

9 or the receipt of genetic services of an individual or 

10 a family member of such individual) or the privacy 

11 of an individual or a family member of the individual 

12 with respect to genetic information (including infor13 mation about a request for or the receipt of genetic 

14 services by an individual or a family member of such 

15 individual) than does this part (or part C insofar as 

16 it applies to this part); or 

17 ‘‘(2) prohibits discrimination on the basis of ge18 netic information than does this part (or part C in19 sofar as it applies to this part).’’. 

20 (e) ELIMINATION OF OPTION OF NON-FEDERAL

21 GOVERNMENTAL PLANS TO BE EXCEPTED FROM RE22 QUIREMENTS CONCERNING GENETIC INFORMATION.—

23 Section 2721(b)(2) of the Public Health Service Act (42 

24 U.S. C. 300gg–21(b)(2)) is amended—
36

•HR 1910 IH 

1 (1) in subparagraph (A), by striking ‘‘If the 

2 plan sponsor’’ and inserting ‘‘Except as provided in 

3 subparagraph (D), if the plan sponsor’’; and 

4 (2) by adding at the end the following: 

5 ‘‘(D) ELECTION NOT APPLICABLE TO RE6 QUIREMENTS CONCERNING GENETIC INFORMA7 TION.—The election described in subparagraph 

8 (A) shall not be available with respect to the 

9 provisions of subsections (a)(1)(F), (c), (d), (e), 

10 (f), and (g) of section 2702 and section 2707, 

11 and the provisions of section 2702(b) to the ex12 tent that they apply to genetic information (or 

13 information about a request for or the receipt 

14 of genetic services by an individual or a family 

15 member of such individual).’’. 

16 (f) AMENDMENT CONCERNING SUPPLEMENTAL EX17 CEPTED BENEFITS.—

18 (1) GROUP MARKET.—Section 2721(d)(3) of 

19 the Public Health Service Act (42 U.S.C. 300gg–

20 23(d)(3)) is amended by inserting ‘‘, other than the 

21 requirements of subsections (a)(1)(F), (b) (in cases 

22 relating to genetic information or information about 

23 a request for or the receipt of genetic services by an 

24 individual or a family member of such individual)), 
37

•HR 1910 IH 

1 (c), (d), (e), (f) and (g) of section 2702 and section 

2 2707,’’ after ‘‘The requirements of this part’’. 

3 (2) INDIVIDUAL MARKET.—Section 2763(b) of 

4 the Public Health Service Act (42 U.S.C. 300gg–

5 47(b)) is amended—

6 (A) by striking ‘‘The requirements of this 

7 part’’ and inserting the following: 

8 ‘‘(1) IN GENERAL.—Except as provided in para9 graph (2), the requirements of this part’’; and 

10 (B) by adding at the end the following: 

11 ‘‘(2) LIMITATION.—The requirements of sec12 tions 2753 and 2754 shall apply to excepted benefits 

13 described in section 2791(c)(4).’’.

14 (g) EFFECTIVE DATE.—

15 (1) IN GENERAL.—The amendments made by 

16 this section shall apply with respect to—

17 (A) group health plans, and health insur18 ance coverage offered in connection with group 

19 health plans, for plan years beginning; and 

20 (B) health insurance coverage offered, 

21 sold, issued, renewed, in effect, or operated in 

22 the individual market, after; 

23 October 1, 2005. 

24 (2) SPECIAL RULE FOR COLLECTIVE BAR25 GAINING AGREEMENTS.—In the case of a group 
38

•HR 1910 IH 

1 health plan maintained pursuant to one or more col2 lective bargaining agreements between employee rep3 resentatives and one or more employers ratified be4 fore the date of the enactment of this Act, the 

5 amendments made by this section shall not apply to 

6 plan years beginning before the later of—

7 (A) the date on which the last of the col8 lective bargaining agreements relating to the 

9 plan terminates (determined without regard to 

10 any extension thereof agreed to after the date 

11 of the enactment of this Act); or 

12 (B) October 1, 2005. 

13 For purposes of subparagraph (A), any plan amend14 ment made pursuant to a collective bargaining 

15 agreement relating to the plan which amends the 

16 plan solely to conform to any requirement of the 

17 amendments made by this section shall not be treat18 ed as a termination of such collective bargaining 

19 agreement.

20 SEC. 103. AMENDMENTS TO INTERNAL REVENUE CODE OF 

21 1986. 

22 (a) PROHIBITION OF HEALTH INSURANCE DISCRIMI23 NATION ON THE BASIS OF GENETIC SERVICES OR PRO24 TECTED GENETIC INFORMATION.—
39

•HR 1910 IH 

1 (1) NO ENROLLMENT RESTRICTION FOR GE2 NETIC SERVICES.—Section 9802(a)(1)(F) of the In3 ternal Revenue Code of 1986 is amended by insert4 ing before the period ‘‘(or information about a re5 quest for or the receipt of genetic services by such 

6 individual or family member of such individual)’’. 

7 (2) NO DISCRIMINATION IN GROUP RATE BASED

8 ON PROTECTED GENETIC INFORMATION.—

9 (A) IN GENERAL.—Subchapter B of chap10 ter 100 of the Internal Revenue Code of 1986 

11 is amended by adding at the end the following: 

12 ‘‘SEC. 9813. PROHIBITING DISCRIMINATION AGAINST 

13 GROUPS ON THE BASIS OF PROTECTED GE14 NETIC INFORMATION. 

15 ‘‘A group health plan shall not deny eligibility to a 

16 group or adjust premium or contribution rates for a group 

17 on the basis of protected genetic information concerning 

18 an individual in the group (or information about a request 

19 for or the receipt of genetic services by such individual 

20 or family member of such individual).’’. 

21 (B) CONFORMING AMENDMENTS.—

22 (i) Section 9802(b)(2)(A) of the Inter23 nal Revenue Code of 1986 is amended to 

24 read as follows: 
40

•HR 1910 IH 

1 ‘‘(A) to restrict the amount that an em2 ployer may be charged for coverage under a 

3 group health plan, except as provided in section 

4 9813; or’’. 

5 (ii) Section 9831(a) of the Internal 

6 Revenue Code of 1986 is amended by in7 serting ‘‘(other than subsections (a)(1)(F), 

8 (b) (with respect to cases relating to ge9 netic information or information about a 

10 request or receipt of genetic services by an 

11 individual or family member of such indi12 vidual), (d), (e), (f), (g), or (h) of section 

13 9802 or section 9813) after ‘‘chapter’’. 

14 (b) LIMITATIONS ON GENETIC TESTING AND ON

15 COLLECTION AND DISCLOSURE OF PROTECTED GENETIC

16 INFORMATION.—Section 9802 of the Internal Revenue 

17 Code of 1986 is amended by adding at the end the fol18 lowing: 

19 ‘‘(d) GENETIC TESTING.—

20 ‘‘(1) LIMITATION ON REQUESTING OR REQUIR21 ING GENETIC TESTING.—A group health plan may 

22 not request or require an individual or a family 

23 member of such individual to undergo a genetic test. 

24 ‘‘(2) RULE OF CONSTRUCTION.—Nothing in 

25 this chapter shall be construed to limit the authority 
41

•HR 1910 IH 

1 of a health care professional, who is providing treat2 ment with respect to an individual and who is em3 ployed by a group health plan, to request that such 

4 individual or family member of such individual un5 dergo a genetic test. Such a health care professional 

6 shall not require that such individual or family mem7 ber undergo a genetic test. 

8 ‘‘(3) CERTAIN TESTS.—The conducting of met9 abolic tests that are not intended to reveal protected 

10 genetic information shall not be considered a viola11 tion of the preceding provisions of this subsection re12 gardless of the results of the tests. Test results that 

13 are protected genetic information shall be subject to 

14 the applicable provisions of this chapter. 

15 ‘‘(e) COLLECTION OF PROTECTED GENETIC INFOR16 MATION.—Except as provided in subsections (g) and (h), 

17 a group health plan shall not request, require, collect, or 

18 purchase protected genetic information concerning an in19 dividual (or information about a request for or the receipt 

20 of genetic services by such individual or family member 

21 of such individual). 

22 ‘‘(f) DISCLOSURE OF PROTECTED GENETIC INFOR23 MATION.—A group health plan shall not disclose protected 

24 genetic information about an individual (or information 
42

•HR 1910 IH 

1 about a request for or the receipt of genetic services by 

2 such individual or family member of such individual) to—

3 ‘‘(1) any entity that is a member of the same 

4 controlled group as such issuer or plan sponsor of 

5 such group health plan; 

6 ‘‘(2) any other group health plan or health in7 surance issuer or any insurance agent, third party 

8 administrator, or other person subject to regulation 

9 under State insurance laws; 

10 ‘‘(3) the Medical Information Bureau or any 

11 other person that collects, compiles, publishes, or 

12 otherwise disseminates insurance information;

13 ‘‘(4) the individual’s employer or any plan spon14 sor; or 

15 ‘‘(5) any other person the Secretary may speci16 fy in regulations. 

17 ‘‘(g) INFORMATION FOR PAYMENT FOR GENETIC

18 SERVICES.—

19 ‘‘(1) IN GENERAL.—With respect to payment 

20 for genetic services conducted concerning an indi21 vidual or the coordination of benefits, a group health 

22 plan may request that the individual provide the 

23 plan with evidence that such services were per24 formed. 
43

•HR 1910 IH 

1 ‘‘(2) RULE OF CONSTRUCTION.—Nothing in 

2 paragraph (1) shall be construed to—

3 ‘‘(A) permit a group health plan to request 

4 (or require) the results of the services referred 

5 to in such paragraph; or 

6 ‘‘(B) require that a group health plan 

7 make payment for services described in such 

8 paragraph where the individual involved has re9 fused to provide evidence of the performance of 

10 such services pursuant to a request by the plan 

11 in accordance with such paragraph. 

12 ‘‘(h) INFORMATION FOR PAYMENT OF OTHER

13 CLAIMS.—With respect to the payment of claims for bene14 fits other than genetic services, a group health plan may 

15 request that an individual provide protected genetic infor16 mation so long as such information—

17 ‘‘(1) is used solely for the payment of a claim; 

18 ‘‘(2) is limited to information that is directly re19 lated to and necessary for the payment of such claim 

20 and the claim would otherwise be denied but for the 

21 protected genetic information; and 

22 ‘‘(3) is used only by an individual (or individ23 uals) within such plan or issuer who needs access to 

24 such information for purposes of payment of a 

25 claim. 
44

•HR 1910 IH 

1 ‘‘(i) RULES OF CONSTRUCTION.—

2 ‘‘(1) COLLECTION OR DISCLOSURE AUTHORIZED

3 BY INDIVIDUAL.—The provisions of subsections (e) 

4 (regarding collection) and (f) shall not apply to an 

5 individual if the individual (or legal representative 

6 of, the individual) provides prior, knowing, vol7 untary, and written authorization for the collection 

8 or disclosure of protected genetic information.

9 ‘‘(2) DISCLOSURE FOR HEALTH CARE TREAT10 MENT.—Nothing in this section shall be construed to 

11 limit or restrict the disclosure of protected genetic 

12 information from a health care provider to another 

13 health care provider for the purpose of providing 

14 health care treatment to the individual involved. 

15 ‘‘(j) DEFINITIONS.—In this section: 

16 ‘‘(1) CONTROLLED GROUP.—The term ‘con17 trolled group’ means any group treated as a single 

18 employer under subsections (b), (c), (m), or (o) of 

19 section 414. 

20 ‘‘(2) GROUP HEALTH PLAN, HEALTH INSUR21 ANCE ISSUER.—The terms ‘group health plan’ and 

22 ‘health insurance issuer’ include a third party ad23 ministrator or other person acting for or on behalf 

24 of such plan or issuer.’’. 
45

•HR 1910 IH 

1 (c) DEFINITIONS.—Section 9832(d) of the Internal 

2 Revenue Code of 1986 is amended by adding at the end 

3 the following: 

4 ‘‘(6) FAMILY MEMBER.—The term ‘family 

5 member’ means with respect to an individual—

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

7 ‘‘(B) a dependent child of the individual, 

8 including a child who is born to or placed for 

9 adoption with the individual; and 

10 ‘‘(C) all other individuals related by blood 

11 to the individual or the spouse or child de12 scribed in subparagraph (A) or (B). 

13 ‘‘(7) GENETIC INFORMATION.—The term ‘ge14 netic information’ means information about genes, 

15 gene products, or inherited characteristics that may 

16 derive from an individual or a family member of 

17 such individual (including information about a re18 quest for or the receipt of genetic services by such 

19 individual or family member of such individual). 

20 ‘‘(8) GENETIC SERVICES.—The term ‘genetic 

21 services’ means health services, including genetic 

22 tests, provided to obtain, assess, or interpret genetic 

23 information for diagnostic and therapeutic purposes, 

24 and for genetic education and counseling.
46

•HR 1910 IH 

1 ‘‘(9) GENETIC TEST.—The term ‘genetic test’ 

2 means the analysis of human DNA, RNA, chro3 mosomes, proteins, or metabolites that detects 

4 genotypes, mutations, or chromosomal changes. 

5 ‘‘(10) PROTECTED GENETIC INFORMATION.—

6 ‘‘(A) IN GENERAL.—Except as provided in 

7 subparagraph (B), the term ‘protected genetic 

8 information’ means—

9 ‘‘(i) information about an individual’s 

10 genetic tests; 

11 ‘‘(ii) information about genetic tests 

12 of family members of the individual; and

13 ‘‘(iii) information about the occur14 rence of a disease or disorder in family 

15 members. 

16 ‘‘(B) LIMITATIONS.—The term ‘protected 

17 genetic information’ shall not include—

18 ‘‘(i) information about the sex or age 

19 of the individual; 

20 ‘‘(ii) information about chemical, 

21 blood, or urine analyses of the individual, 

22 unless these analyses are genetic tests; or 

23 ‘‘(iii) information about physical 

24 exams of the individual, and other informa-
47

•HR 1910 IH 

1 tion that indicates the current health sta2 tus of the individual.’’. 

3 (d) EFFECTIVE DATE.—

4 (1) IN GENERAL.—Except as provided in this 

5 section, this section and the amendments made by 

6 this section shall apply with respect to group health 

7 plans for plan years beginning after October 1, 

8 2005. 

9 (2) SPECIAL RULE FOR COLLECTIVE BAR10 GAINING AGREEMENTS.—In the case of a group 

11 health plan maintained pursuant to one or more col12 lective bargaining agreements between employee rep13 resentatives and one or more employers ratified be14 fore the date of the enactment of this Act, this sec15 tion and the amendments made by this section shall 

16 not apply to plan years beginning before the later 

17 of—

18 (A) the date on which the last of the col19 lective bargaining agreements relating to the 

20 plan terminates (determined without regard to 

21 any extension thereof agreed to after the date 

22 of the enactment of this Act), or 

23 (B) October 1, 2005. 

24 For purposes of subparagraph (A), any plan amend25 ment made pursuant to a collective bargaining 
48

•HR 1910 IH 

1 agreement relating to the plan which amends the 

2 plan solely to conform to any requirement of the 

3 amendments made by this section shall not be treat4 ed as a termination of such collective bargaining 

5 agreement. 

6 SEC. 104. AMENDMENTS TO TITLE XVIII OF THE SOCIAL SE7 CURITY ACT RELATING TO MEDIGAP. 

8 (a) NONDISCRIMINATION.—

9 (1) IN GENERAL.—Section 1882(s)(2) of the 

10 Social Security Act (42 U.S.C. 1395ss(s)(2)) is 

11 amended by adding at the end the following: 

12 ‘‘(E)(i) An issuer of a medicare supple13 mental policy shall not deny or condition the 

14 issuance or effectiveness of the policy, and shall 

15 not discriminate in the pricing of the policy (in16 cluding the adjustment of premium rates) of an 

17 eligible individual on the basis of protected ge18 netic information concerning the individual (or 

19 information about a request for, or the receipt 

20 of, genetic services by such individual or family 

21 member of such individual). 

22 ‘‘(ii) For purposes of clause (i), the terms 

23 ‘family member’, ‘genetic services’, and ‘pro24 tected genetic information’ shall have the mean25 ings given such terms in subsection (v).’’. 
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1 (2) EFFECTIVE DATE.—The amendment made 

2 by paragraph (1) shall apply with respect to a policy 

3 for policy years beginning after October 1, 2005. 

4 (b) LIMITATIONS ON GENETIC TESTING AND ON

5 COLLECTION AND DISCLOSURE OF PROTECTED GENETIC

6 INFORMATION.—

7 (1) IN GENERAL.—Section 1882 of the Social 

8 Security Act (42 U.S.C. 1395ss) is amended by add9 ing at the end the following:

10 ‘‘(v) LIMITATIONS ON GENETIC TESTING AND ON

11 COLLECTION AND DISCLOSURE OF PROTECTED GENETIC

12 INFORMATION.—

13 ‘‘(1) GENETIC TESTING.—

14 ‘‘(A) LIMITATION ON REQUESTING OR RE15 QUIRING GENETIC TESTING.—An issuer of a 

16 medicare supplemental policy shall not request 

17 or require an individual or a family member of 

18 such individual to undergo a genetic test.

19 ‘‘(B) RULE OF CONSTRUCTION.—Nothing 

20 in this title shall be construed to limit the au21 thority of a health care professional, who is pro22 viding treatment with respect to an individual 

23 and who is employed by an issuer of a medicare 

24 supplemental policy, to request that such indi25 vidual or family member of such individual un-
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•HR 1910 IH 

1 dergo a genetic test. Such a health care profes2 sional shall not require that such individual or 

3 family member undergo a genetic test. 

4 ‘‘(C) CERTAIN TESTS.—The conducting of 

5 metabolic tests that are not intended to reveal 

6 protected genetic information shall not be con7 sidered a violation of the preceding provisions 

8 of this paragraph regardless of the results of 

9 the tests. Test results that are protected genetic 

10 information shall be subject to the applicable 

11 provisions of this subsection. 

12 ‘‘(2) COLLECTION OF PROTECTED GENETIC IN13 FORMATION.—Except as provided in paragraphs (4) 

14 and (5), an issuer of a medicare supplemental policy 

15 shall not request, require, collect, or purchase pro16 tected genetic information concerning an individual 

17 (or information about a request for or the receipt of 

18 genetic services by such individual or family member 

19 of such individual). 

20 ‘‘(3) DISCLOSURE OF PROTECTED GENETIC IN21 FORMATION.—An issuer of a medicare supplemental 

22 policy shall not disclose protected genetic informa23 tion about an individual (or information about a re24 quest for or the receipt of genetic services by such 

25 individual or family member of such individual) to—
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•HR 1910 IH 

1 ‘‘(A) any entity that is a member of the 

2 same controlled group as such issuer; 

3 ‘‘(B) any issuer of a medicare supple4 mental policy, group health plan or health in5 surance issuer, or any insurance agent, third 

6 party administrator, or other person subject to 

7 regulation under State insurance laws; 

8 ‘‘(C) the Medical Information Bureau or 

9 any other person that collects, compiles, pub10 lishes, or otherwise disseminates insurance in11 formation; 

12 ‘‘(D) the individual’s employer or any plan 

13 sponsor; or

14 ‘‘(E) any other person the Secretary may 

15 specify in regulations. 

16 ‘‘(4) INFORMATION FOR PAYMENT FOR GE17 NETIC SERVICES.—

18 ‘‘(A) IN GENERAL.—With respect to pay19 ment for genetic services conducted concerning 

20 an individual or the coordination of benefits, an 

21 issuer of a medicare supplemental policy may 

22 request that the individual provide the issuer 

23 with evidence that such services were per24 formed. 
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1 ‘‘(B) RULE OF CONSTRUCTION.—Nothing 

2 in subparagraph (A) shall be construed to—

3 ‘‘(i) permit an issuer to request (or 

4 require) the results of the services referred 

5 to in such subparagraph; or 

6 ‘‘(ii) require that an issuer make pay7 ment for services described in such sub8 paragraph where the individual involved 

9 has refused to provide evidence of the per10 formance of such services pursuant to a re11 quest by the issuer in accordance with such 

12 subparagraph. 

13 ‘‘(5) INFORMATION FOR PAYMENT OF OTHER

14 CLAIMS.—With respect to the payment of claims for 

15 benefits other than genetic services, an issuer of a 

16 medicare supplemental policy may request that an 

17 individual provide protected genetic information so 

18 long as such information—

19 ‘‘(A) is used solely for the payment of a 

20 claim; 

21 ‘‘(B) is limited to information that is di22 rectly related to and necessary for the payment 

23 of such claim and the claim would otherwise be 

24 denied but for the protected genetic informa25 tion; and 
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•HR 1910 IH 

1 ‘‘(C) is used only by an individual (or indi2 viduals) within such issuer who needs access to 

3 such information for purposes of payment of a 

4 claim. 

5 ‘‘(6) RULES OF CONSTRUCTION.—

6 ‘‘(A) COLLECTION OR DISCLOSURE AU7 THORIZED BY INDIVIDUAL.—The provisions of 

8 paragraphs (2) (regarding collection) and (3) 

9 shall not apply to an individual if the individual 

10 (or legal representative of the individual) pro11 vides prior, knowing, voluntary, and written au12 thorization for the collection or disclosure of 

13 protected genetic information. 

14 ‘‘(B) DISCLOSURE FOR HEALTH CARE

15 TREATMENT.—Nothing in this section shall be 

16 construed to limit or restrict the disclosure of 

17 protected genetic information from a health 

18 care provider to another health care provider 

19 for the purpose of providing health care treat20 ment to the individual involved. 

21 ‘‘(7) VIOLATION OF GENETIC DISCRIMINATION

22 OR GENETIC DISCLOSURE PROVISIONS.—

23 ‘‘(A) IN GENERAL.—In any action under 

24 this subsection against any administrator of a 

25 medicare supplemental policy (including any 
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•HR 1910 IH 

1 third party administrator or other person acting 

2 for or on behalf of such policy) alleging a viola3 tion of this subsection, the court may award 

4 any appropriate legal or equitable relief. Such 

5 relief may include a requirement for the pay6 ment of attorney’s fees and costs, including the 

7 costs of expert witnesses. 

8 ‘‘(B) CIVIL PENALTY.—In any action de9 scribed in subparagraph (A), the Secretary 

10 may, to vindicate the public interest, assess a 

11 civil penalty against the defendant in an 

12 amount—

13 ‘‘(i) not exceeding $50,000 for a first 

14 violation, and 

15 ‘‘(ii) not exceeding $100,000 for any 

16 subsequent violation. 

17 Any such relief awarded shall be paid into the 

18 general fund of the Treasury.’’. 

19 ‘‘(8) SPECIAL RULE IN CASE OF GENETIC IN20 FORMATION.—This subsection (relating to genetic 

21 information or information about a request for, or 

22 the receipt of, genetic services by an individual or a 

23 family member of such individual) shall not be con24 strued to supersede any provision of State law which 

25 establishes, implements, or continues in effect a 
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•HR 1910 IH 

1 standard, requirement, or remedy that more com2 pletely—

3 ‘‘(A) protects the confidentiality of genetic 

4 information (including information about a re5 quest for, or the receipt of, genetic services by 

6 an individual or a family member of such indi7 vidual) or the privacy of an individual or a fam8 ily member of the individual with respect to ge9 netic information (including information about 

10 a request for, or the receipt of, genetic services 

11 by an individual or a family member of such in12 dividual) than does this subsection; or

13 ‘‘(B) prohibits discrimination on the basis 

14 of genetic information than does this sub15 section. 

16 ‘‘(9) DEFINITIONS.—In this subsection: 

17 ‘‘(A) CONTROLLED GROUP.—The term 

18 ‘controlled group’ means any group treated as 

19 a single employer under subsection (b), (c), 

20 (m), or (o) of section 414 of the Internal Rev21 enue Code of 1986. 

22 ‘‘(B) FAMILY MEMBER.—The term ‘family 

23 member’ means with respect to an individual—

24 ‘‘(i) the spouse of the individual; 
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•HR 1910 IH 

1 ‘‘(ii) a dependent child of the indi2 vidual, including a child who is born to or 

3 placed for adoption with the individual; or 

4 ‘‘(iii) any other individuals related by 

5 blood to the individual or to the spouse or 

6 child described in clause (i) or (ii). 

7 ‘‘(C) GENETIC INFORMATION.—The term 

8 ‘genetic information’ means information about 

9 genes, gene products, or inherited characteris10 tics that may derive from an individual or a 

11 family member of such individual (including in12 formation about a request for, or the receipt of, 

13 genetic services by such individual or family 

14 member of such individual). 

15 ‘‘(D) GENETIC SERVICES.—The term ‘ge16 netic services’ means health services, including 

17 genetic tests, provided to obtain, assess, or in18 terpret genetic information for diagnostic and 

19 therapeutic purposes, and for genetic education 

20 and counseling. 

21 ‘‘(E) GENETIC TEST.—The term ‘genetic 

22 test’ means the analysis of human DNA, RNA, 

23 chromosomes, proteins, or metabolites that de24 tects genotypes, mutations, or chromosomal 

25 changes. 
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1 ‘‘(F) ISSUER OF A MEDICARE SUPPLE2 MENTAL POLICY.—The term ‘issuer of a medi3 care supplemental policy’ includes a third-party 

4 administrator or other person acting for or on 

5 behalf of such issuer. 

6 ‘‘(G) PROTECTED GENETIC INFORMA7 TION.—

8 ‘‘(i) IN GENERAL.—Except as pro9 vided in clause (ii), the term ‘protected ge10 netic information’ means—

11 ‘‘(I) information about an indi12 vidual’s genetic tests; 

13 ‘‘(II) information about genetic 

14 tests of family members of the indi15 vidual; and 

16 ‘‘(III) information about the oc17 currence of a disease or disorder in 

18 family members.’’. 

19 ‘‘(ii) LIMITATIONS.—The term ‘pro20 tected genetic information’ shall not in21 clude—

22 ‘‘(I) information about the sex or 

23 age of the individual; 

24 ‘‘(II) information about chemical, 

25 blood, or urine analyses of the indi-
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1 vidual, unless these analyses are ge2 netic tests; or 

3 ‘‘(III) information about physical 

4 exams of the individual, and other in5 formation that indicates the current 

6 health status of the individual.’’. 

7 (2) CONFORMING AMENDMENT.—Section 

8 1882(o) of the Social Security Act (42 U.S.C. 

9 1395ss(o)) is amended by adding at the end the fol10 lowing: 

11 ‘‘(4) The issuer of the medicare supplemental 

12 policy complies with subsection (s)(2)(E) and sub13 section (v).’’. 

14 (3) EFFECTIVE DATE.—The amendments made 

15 by this subsection shall apply with respect to an 

16 issuer of a medicare supplemental policy for policy 

17 years beginning after October 1, 2005. 

18 (c) TRANSITION PROVISIONS.—

19 (1) IN GENERAL.—If the Secretary of Health 

20 and Human Services identifies a State as requiring 

21 a change to its statutes or regulations to conform its 

22 regulatory program to the changes made by this sec23 tion, the State regulatory program shall not be con24 sidered to be out of compliance with the require25 ments of section 1882 of the Social Security Act due 
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1 solely to failure to make such change until the date 

2 specified in paragraph (4). 

3 (2) NAIC STANDARDS.—If, not later than June 

4 30, 2005, the National Association of Insurance 

5 Commissioners (in this subsection referred to as the 

6 ‘‘NAIC’’) modifies its NAIC Model Regulation relat7 ing to section 1882 of the Social Security Act (re8 ferred to in such section as the 1991 NAIC Model 

9 Regulation, as subsequently modified) to conform to 

10 the amendments made by this section, such revised

11 regulation incorporating the modifications shall be 

12 considered to be the applicable NAIC model regula13 tion (including the revised NAIC model regulation 

14 and the 1991 NAIC Model Regulation) for the pur15 poses of such section. 

16 (3) SECRETARY STANDARDS.—If the NAIC 

17 does not make the modifications described in para18 graph (2) within the period specified in such para19 graph, the Secretary of Health and Human Services 

20 shall, not later than October 1, 2005, make the 

21 modifications described in such paragraph and such 

22 revised regulation incorporating the modifications 

23 shall be considered to be the appropriate regulation 

24 for the purposes of such section. 

25 (4) DATE SPECIFIED.—
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1 (A) IN GENERAL.—Subject to subpara2 graph (B), the date specified in this paragraph 

3 for a State is the earlier of—

4 (i) the date the State changes its stat5 utes or regulations to conform its regu6 latory program to the changes made by 

7 this section, or 

8 (ii) October 1, 2005. 

9 (B) ADDITIONAL LEGISLATIVE ACTION RE10 QUIRED.—In the case of a State which the Sec11 retary identifies as—

12 (i) requiring State legislation (other 

13 than legislation appropriating funds) to 

14 conform its regulatory program to the 

15 changes made in this section, but 

16 (ii) having a legislature which is not 

17 scheduled to meet in 2005 in a legislative 

18 session in which such legislation may be 

19 considered, 

20 the date specified in this paragraph is the first 

21 day of the first calendar quarter beginning after 

22 the close of the first legislative session of the 

23 State legislature that begins on or after July 1, 

24 2005. For purposes of the previous sentence, in 

25 the case of a State that has a 2-year legislative 
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1 session, each year of such session shall be 

2 deemed to be a separate regular session of the 

3 State legislature. 

4 TITLE II—PROHIBITION OF EM5 PLOYMENT DISCRIMINATION 

6 ON THE BASIS OF PRO7 TECTED GENETIC INFORMA8 TION 

9 SEC. 201. DEFINITIONS. 

10 In this title: 

11 (1) EMPLOYEE; EMPLOYER; EMPLOYMENT

12 AGENCY; LABOR ORGANIZATION; MEMBER.—The 

13 terms ‘‘employee’’, ‘‘employer’’, ‘‘employment agen14 cy’’, and ‘‘labor organization’’ have the meanings 

15 given such terms in section 701 of the Civil Rights 

16 Act of 1964 (42 U.S.C. 2000e), except that the 

17 terms ‘‘employee’’ and ‘‘employer’’ shall also include 

18 the meanings given such terms in section 717 of the 

19 Civil Rights Act of 1964 (42 U.S.C. 2000e–16). The 

20 terms ‘‘employee’’ and ‘‘member’’ include an appli21 cant for employment and an applicant for member22 ship in a labor organization, respectively. 

23 (2) FAMILY MEMBER.—The term ‘‘family mem24 ber’’ means with respect to an individual—

25 (A) the spouse of the individual;
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•HR 1910 IH 

1 (B) a dependent child of the individual, in2 cluding a child who is born to or placed for 

3 adoption with the individual; or 

4 (C) any other individuals related by blood 

5 to the individual or to the spouse or child de6 scribed in subparagraph (A) or (B). 

7 (3) GENETIC MONITORING.—The term ‘‘genetic 

8 monitoring’’ means the periodic examination of em9 ployees to evaluate acquired modifications to their 

10 genetic material, such as chromosomal damage or 

11 evidence of increased occurrence of mutations, that 

12 may have developed in the course of employment due 

13 to exposure to toxic substances in the workplace, in 

14 order to identify, evaluate, and respond to the ef15 fects of or control adverse environmental exposures 

16 in the workplace. 

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

18 services’’ means health services, including genetic 

19 tests, provided to obtain, assess, or interpret genetic 

20 information for diagnostic and therapeutic purposes, 

21 and for genetic education and counseling. 

22 (5) GENETIC TEST.—The term ‘‘genetic test’’ 

23 means the analysis of human DNA, RNA, chro24 mosomes, proteins, or metabolites that detects 

25 genotypes, mutations, or chromosomal changes. 
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1 (6) PROTECTED GENETIC INFORMATION.—

2 (A) IN GENERAL.—Except as provided in 

3 subparagraph (B), the term ‘‘protected genetic 

4 information’’ means—

5 (i) information about an individual’s 

6 genetic tests; 

7 (ii) information about genetic tests of 

8 family members of the individual; and 

9 (iii) information about the occurrence 

10 of a disease or disorder in family members. 

11 (B) LIMITATIONS.—The term ‘‘protected 

12 genetic information’’ shall not include—

13 (i) information about the sex or age of 

14 the individual; 

15 (ii) information about chemical, blood, 

16 or urine analyses of the individual, unless 

17 these analyses are genetic tests; or 

18 (iii) information about physical exams 

19 of the individual, and other information 

20 that indicates the current health status of 

21 the individual. 

22 SEC. 202. EMPLOYER PRACTICES. 

23 (a) IN GENERAL.—It shall be an unlawful employ24 ment practice for an employer (or a worker’s compensa25 tion insurance issuer acting on the employer’s behalf)—
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1 (1) to fail or refuse to hire or to discharge any 

2 individual, or otherwise to discriminate against any 

3 individual with respect to the compensation, terms, 

4 conditions, or privileges of employment of the indi5 vidual, because of protected genetic information with 

6 respect to the individual or information about a re7 quest for or the receipt of genetic services by such 

8 individual or family member of such individual; 

9 (2) to limit, segregate, or classify the employees 

10 of the employer in any way that would deprive or 

11 tend to deprive any individual of employment oppor12 tunities or otherwise adversely affect the status of 

13 the individual as an employee, because of protected 

14 genetic information with respect to the individual, or 

15 information about a request for or the receipt of ge16 netic services by such individual or family member 

17 of such individual; or 

18 (3) to request, require, collect or purchase pro19 tected genetic information with respect to an indi20 vidual or a family member of the individual except—

21 (A) where used for genetic monitoring of 

22 biological effects of toxic substances in the 

23 workplace, but only if—
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1 (i) the employee has provided prior, 

2 knowing, voluntary, and written authoriza3 tion;

4 (ii) the employee is informed of indi5 vidual monitoring results; 

6 (iii) the monitoring conforms to any 

7 genetic monitoring regulations that may be 

8 promulgated by the Secretary of Labor 

9 pursuant to the Occupational Safety and 

10 Health Act of 1970 (29 U.S.C. 651 et 

11 seq.) or the Federal Mine Safety and 

12 Health Act of 1977 (30 U.S.C. 801 et 

13 seq.); and 

14 (iv) the employer, excluding any li15 censed health care professional that is in16 volved in the genetic monitoring program, 

17 receives the results of the monitoring only 

18 in aggregate terms that do not disclose the 

19 identity of specific employees; 

20 (B) where health or genetic services are of21 fered by the employer and the employee pro22 vides prior, knowing, voluntary, and written au23 thorization, and only the employee or family 

24 member of such employee receives the results of 

25 such services; or
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1 (C) with respect to an applicant who has 

2 been given a conditional offer of employment or 

3 to an employee, an employer may request, re4 quire, collect or purchase the information de5 scribed in section 201(6)(C), if—

6 (i) the request or requirement is con7 sistent with the Americans with Disabil8 ities Act of 1990 (42 U.S.C. 12101 et 

9 seq.) or the Rehabilitation Act of 1973 (29 

10 U.S.C. 701 et seq.); and 

11 (ii)(I) the information obtained is to 

12 be used exclusively to assess whether fur13 ther medical evaluation is needed to diag14 nose a current disease, or medical condi15 tion or disorder; 

16 (II) such current disease, or medical 

17 condition or disorder could prevent the ap18 plicant or employee from performing the 

19 essential functions of the position desired 

20 or held; and 

21 (III) the information described in 

22 such section will not be disclosed to per23 sons other than medical personnel involved 

24 in or responsible for assessing whether fur25 ther medical evaluation is needed to diag-
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1 nose a current disease, or medical condi2 tion or disorder, except as otherwise per3 mitted by this title. 

4 (b) LIMITATION.—In the case of protected genetic in5 formation to which subparagraph (A), (B), or (C) of sub6 section (a)(3) applies, such information may not be used 

7 in violation of paragraph (1) or (2) of subsection (a). 

8 SEC. 203. EMPLOYMENT AGENCY PRACTICES. 

9 It shall be an unlawful employment practice for an 

10 employment agency—

11 (1) to fail or refuse to refer for employment, or 

12 otherwise to discriminate against, any individual be13 cause of protected genetic information with respect 

14 to the individual (or information about a request for 

15 or the receipt of genetic services by such individual 

16 or family member of such individual); 

17 (2) to limit, segregate, or classify individuals or 

18 fail or refuse to refer for employment any individual 

19 in any way that would deprive or tend to deprive any 

20 individual of employment opportunities or would 

21 limit the employment opportunities or otherwise ad22 versely affect the status of the individual as an em23 ployee, because of protected genetic information with 

24 respect to the individual (or information about a re-
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1 quest for or the receipt of genetic services by such 

2 individual or family member of such individual); 

3 (3) to request, require, collect or purchase pro4 tected genetic information with respect to an indi5 vidual (or information about a request for or the re6 ceipt of genetic services by such individual or family 

7 member of such individual); or 

8 (4) to cause or attempt to cause an employer to 

9 discriminate against an individual in violation of this 

10 title. 

11 SEC. 204. LABOR ORGANIZATION PRACTICES. 

12 It shall be an unlawful employment practice for a 

13 labor organization—

14 (1) to exclude or to expel from the membership 

15 of the organization, or otherwise to discriminate 

16 against, any individual because of protected genetic 

17 information with respect to the individual (or infor18 mation about a request for or the receipt of genetic 

19 services by such individual or family member of such 

20 individual); 

21 (2) to limit, segregate, or classify the members 

22 of the organization, or fail or refuse to refer for em23 ployment any individual, in any way that would de24 prive or tend to deprive any individual of employ25 ment opportunities, or would limit the employment 
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1 opportunities or otherwise adversely affect the status 

2 of the individual as an employee, because of pro3 tected genetic information with respect to the indi4 vidual (or information about a request for or the re5 ceipt of genetic services by such individual or family 

6 member of such individual); 

7 (3) to request, require, collect or purchase pro8 tected genetic information with respect to an indi9 vidual (or information about a request for or the re10 ceipt of genetic services by such individual or family 

11 member of such individual); or 

12 (4) to cause or attempt to cause an employer to 

13 discriminate against an individual in violation of this 

14 title. 

15 SEC. 205. TRAINING PROGRAMS. 

16 It shall be an unlawful employment practice for any 

17 employer, labor organization, or joint labor-management 

18 committee controlling apprenticeship or other training or 

19 retraining, including on-the-job training programs—

20 (1) to discriminate against any individual be21 cause of protected genetic information with respect 

22 to the individual (or information about a request for 

23 or the receipt of genetic services by such individual), 

24 in admission to, or employment in, any program es-
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1 tablished to provide apprenticeship or other training 

2 or retraining; 

3 (2) to limit, segregate, or classify the members 

4 of the organization, or fail or refuse to refer for em5 ployment any individual, in any way that would de6 prive or tend to deprive any individual of employ7 ment opportunities, or would limit the employment 

8 opportunities or otherwise adversely affect the status 

9 of the individual as an employee, because of pro10 tected genetic information with respect to the indi11 vidual (or information about a request for or receipt 

12 of genetic services by such individual or family mem13 ber of such individual); 

14 (3) to request, require, collect or purchase pro15 tected genetic information with respect to an indi16 vidual (or information about a request for or receipt 

17 of genetic services by such individual or family mem18 ber of such individual); or 

19 (4) to cause or attempt to cause an employer to 

20 discriminate against an individual in violation of this 

21 title. 

22 SEC. 206. MAINTENANCE AND DISCLOSURE OF PROTECTED 

23 GENETIC INFORMATION. 

24 (a) MAINTENANCE OF PROTECTED GENETIC INFOR25 MATION.—If an employer (or a worker’s compensation in-
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1 surance issuer acting on the employer’s behalf) possesses 

2 protected genetic information about an employee (or infor3 mation about a request for or receipt of genetic services 

4 by such employee or family member of such employee), 

5 such information shall be treated and maintained as part 

6 of the employee’s confidential medical records.

7 (b) DISCLOSURE OF PROTECTED GENETIC INFORMA8 TION.—An employer (or a worker’s compensation insur9 ance issuer acting on the employer’s behalf) shall not dis10 close protected genetic information (or information about 

11 a request for or receipt of genetic services by such em12 ployee or family member of such employee) except—

13 (1) to the employee who is the subject of the in14 formation at the request of the employee; 

15 (2) to an occupational or other health re16 searcher if the research is conducted in compliance 

17 with the regulations and protections provided for 

18 under part 46 of title 45, Code of Federal Regula19 tions; 

20 (3) under legal compulsion of a Federal court 

21 order, except that if the court order was secured 

22 without the knowledge of the individual to whom the 

23 information refers, the employer (or a worker’s com24 pensation insurance issuer acting on the employer’s 

25 behalf) shall provide the individual with adequate
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1 notice to challenge the court order unless the court 

2 order also imposes confidentiality requirements; and 

3 (4) to government officials who are inves4 tigating compliance with this title if the information 

5 is relevant to the investigation. 

6 SEC. 207. CIVIL ACTION. 

7 (a) IN GENERAL.—One or more employees, members 

8 of a labor organization, or participants in training pro9 grams or a labor organization may bring an action in a 

10 Federal or State court of competent jurisdiction against 

11 an employer (or a worker’s compensation insurance issuer 

12 acting on the employer’s behalf), employment agency, 

13 labor organization, or joint labor-management committee 

14 or training program who commits a violation of this title. 

15 (b) ENFORCEMENT BY THE EQUAL EMPLOYMENT

16 OPPORTUNITY COMMISSION.—

17 (1) IN GENERAL.—The powers, remedies, and 

18 procedures set forth in sections 705, 706, 707, 709, 

19 710, and 717 of the Civil Rights Act of 1964 (42 

20 U.S.C. 2000e–4, 2000e–5, 2000e–6, 2000e–8, 

21 2000e–9, and 2000e–16) shall be the powers, rem22 edies, and procedures provided to the Equal Employ23 ment Opportunity Commission to enforce this title. 

24 The Commission may promulgate regulations to im25 plement these powers, remedies, and procedures. 
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1 (2) EXHAUSTION OF REMEDIES.—Nothing in 

2 this subsection shall be construed to require that an 

3 individual exhaust the administrative remedies avail4 able through the Equal Employment Opportunity 

5 Commission prior to commencing a civil action 

6 under this section, except that if an individual files 

7 a charge of discrimination with the Commission that 

8 alleges a violation of this title, the individual shall 

9 exhaust the administrative remedies available 

10 through the Commission prior to commencing a civil 

11 action under this section. 

12 (c) REMEDY.—A Federal or State court may award 

13 any appropriate legal or equitable relief under this section. 

14 Such relief may include a requirement for the payment 

15 of attorney’s fees and costs, including the cost of experts. 

16 SEC. 208. EXCEPTIONS; RULES OF CONSTRUCTION. 

17 (a) TREATMENT OF CERTAIN TESTS.—The con18 ducting of metabolic tests that are not intended to reveal 

19 protected genetic information shall not be considered a 

20 violation of 203(a)(3), 204(3), 205(3), or 206(3) regard21 less of the results of the tests. Test results that are pro22 tected genetic information shall be subject to the applica23 ble provisions of this title. 

24 (b) RULES OF CONSTRUCTION.—Nothing in this title 

25 shall be construed to—
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1 (1) limit the rights or protections of an indi2 vidual under the Americans with Disabilities Act of 

3 1990 (42 U.S.C. 12101 et seq.), including coverage 

4 afforded to individuals under section 102 of such 

5 Act; 

6 (2) limit the rights or protections of an indi7 vidual under the Rehabilitation Act of 1973 (29 

8 U.S.C. 701 et seq.); 

9 (3) limit the rights or protections of an indi10 vidual under any other Federal or State statute that 

11 provides equal or greater protection to an individual 

12 than the rights accorded under this title; 

13 (4) apply to the Armed Forces Repository of 

14 Specimen Samples for the Identification of Remains; 

15 or 

16 (5) limit the statutory or regulatory authority 

17 of the Occupational Safety and Health Administra18 tion or the Mine Safety and Health Administration 

19 to promulgate or enforce workplace safety and 

20 health laws and regulations. 

21 SEC. 209. AUTHORIZATION OF APPROPRIATIONS. 

22 There are authorized to be appropriated such sums 

23 as may be necessary to carry out this title. 

24 SEC. 210. EFFECTIVE DATE. 

25 This title shall become effective on October 1, 2005. 
75

•HR 1910 IH 

1 TITLE III—MISCELLANEOUS 

2 PROVISIONS 

3 SEC. 301. SEVERABILITY. 

4 If any provision of this Act, an amendment made by 

5 this Act, or the application of such provision or amend6 ment to any person or circumstance is held to be unconsti7 tutional, the remainder of this Act, the amendments made 

8 by the remainder of this Act, and the application of the 

9 remainder of this Act and the amendments made thereby 

10 to any person or circumstance shall not be affected by 

11 such holding.

Æ