II 

Calendar No. 3 

109TH CONGRESS 

1ST SESSION S. 306 

To prohibit discrimination on the basis of genetic information with respect 

to health insurance and employment. 

IN THE SENATE OF THE UNITED STATES 

FEBRUARY 7, 2005 

Ms. SNOWE (for herself, Mr. FRIST, Mr. GREGG, Mr. KENNEDY, Mr. ENZI, 

Mr. JEFFORDS, Mr. DODD, Mr. HARKIN, Ms. COLLINS, Mr. TALENT, Mr. 

BINGAMAN, Mr. HATCH, Ms. MIKULSKI, Mrs. MURRAY, Mrs. CLINTON, 

and Mr. DEWINE) introduced the following bill; which was read twice and 

referred to the Committee on Health, Education, Labor, and Pensions 

FEBRUARY 10, 2005 

Reported by Mr. ENZI, with an amendment 

[Strike out all after the enacting clause and insert the part printed in italic] 

A BILL

To prohibit discrimination on the basis of genetic information 

with respect to health insurance and employment.

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; TABLE OF CONTENTS. 

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

5 ‘‘Genetic Information Nondiscrimination Act of 2005’’. 
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1 (b) TABLE OF CONTENTS.—The table of contents of 

2 this Act is as follows:

Sec. 1. Short title; table of contents. 

Sec. 2. Findings. 

TITLE I—GENETIC NONDISCRIMINATION IN HEALTH INSURANCE 

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

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

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

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

medigap. 

Sec. 105. Privacy and confidentiality. 

Sec. 106. Assuring coordination. 

Sec. 107. Regulations; effective date. 

TITLE II—PROHIBITING EMPLOYMENT DISCRIMINATION ON THE 

BASIS OF 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. Confidentiality of genetic information. 

Sec. 207. Remedies and enforcement. 

Sec. 208. Disparate impact. 

Sec. 209. Construction. 

Sec. 210. Medical information that is not genetic information. 

Sec. 211. Regulations. 

Sec. 212. Authorization of appropriations. 

Sec. 213. Effective date. 

TITLE III—MISCELLANEOUS PROVISION 

Sec. 301. Severability.

3 SEC. 2. FINDINGS. 

4 Congress makes the following findings: 

5 (1) Deciphering the sequence of the human ge6 nome and other advances in genetics open major 

7 new opportunities for medical progress. New knowl8 edge about the genetic basis of illness will allow for 

9 earlier detection of illnesses, often before symptoms 

10 have begun. Genetic testing can allow individuals to 
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1 take steps to reduce the likelihood that they will con2 tract a particular disorder. New knowledge about ge3 netics may allow for the development of better thera4 pies that are more effective against disease or have 

5 fewer side effects than current treatments. These 

6 advances give rise to the potential misuse of genetic 

7 information to discriminate in health insurance and 

8 employment. 

9 (2) The early science of genetics became the 

10 basis of State laws that provided for the sterilization 

11 of persons having presumed genetic ‘‘defects’’ such 

12 as mental retardation, mental disease, epilepsy, 

13 blindness, and hearing loss, among other conditions. 

14 The first sterilization law was enacted in the State 

15 of Indiana in 1907. By 1981, a majority of States 

16 adopted sterilization laws to ‘‘correct’’ apparent ge17 netic traits or tendencies. Many of these State laws 

18 have since been repealed, and many have been modi19 fied to include essential constitutional requirements 

20 of due process and equal protection. However, the 

21 current explosion in the science of genetics, and the 

22 history of sterilization laws by the States based on 

23 early genetic science, compels Congressional action 

24 in this area. 
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1 (3) Although genes are facially neutral markers, 

2 many genetic conditions and disorders are associated 

3 with particular racial and ethnic groups and gender. 

4 Because some genetic traits are most prevalent in 

5 particular groups, members of a particular group 

6 may be stigmatized or discriminated against as a re7 sult of that genetic information. This form of dis8 crimination was evident in the 1970s, which saw the 

9 advent of programs to screen and identify carriers of 

10 sickle cell anemia, a disease which afflicts African11 Americans. Once again, State legislatures began to 

12 enact discriminatory laws in the area, and in the 

13 early 1970s began mandating genetic screening of 

14 all African Americans for sickle cell anemia, leading 

15 to discrimination and unnecessary fear. To alleviate 

16 some of this stigma, Congress in 1972 passed the 

17 National Sickle Cell Anemia Control Act, which 

18 withholds Federal funding from States unless sickle 

19 cell testing is voluntary. 

20 (4) Congress has been informed of examples of 

21 genetic discrimination in the workplace. These in22 clude the use of pre-employment genetic screening at 

23 Lawrence Berkeley Laboratory, which led to a court 

24 decision in favor of the employees in that case Nor25 man-Bloodsaw v. Lawrence Berkeley Laboratory (135 
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1 F.3d 1260, 1269 (9th Cir. 1998)). Congress clearly 

2 has a compelling public interest in relieving the fear 

3 of discrimination and in prohibiting its actual prac4 tice in employment and health insurance. 

5 (5) Federal law addressing genetic discrimina6 tion in health insurance and employment is incom7 plete in both the scope and depth of its protections. 

8 Moreover, while many States have enacted some type 

9 of genetic non-discrimination law, these laws vary 

10 widely with respect to their approach, application, 

11 and level of protection. Congress has collected sub12 stantial evidence that the American public and the 

13 medical community find the existing patchwork of 

14 State and Federal laws to be confusing and inad15 equate to protect them from discrimination. There16 fore Federal legislation establishing a national and 

17 uniform basic standard is necessary to fully protect 

18 the public from discrimination and allay their con19 cerns about the potential for discrimination, thereby 

20 allowing individuals to take advantage of genetic 

21 testing, technologies, research, and new therapies. 
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1 TITLE I—GENETIC NON2 DISCRIMINATION IN HEALTH 

3 INSURANCE 

4 SEC. 101. AMENDMENTS TO EMPLOYEE RETIREMENT IN5 COME SECURITY ACT OF 1974. 

6 (a) PROHIBITION OF HEALTH DISCRIMINATION ON

7 THE BASIS OF GENETIC INFORMATION OR GENETIC

8 SERVICES.— 

9 (1) NO ENROLLMENT RESTRICTION FOR GE10 NETIC SERVICES.—Section 702(a)(1)(F) of the Em11 ployee Retirement Income Security Act of 1974 (29 

12 U.S.C. 1182(a)(1)(F)) is amended by inserting be13 fore the period the following: ‘‘(including informa14 tion about a request for or receipt of genetic services 

15 by an individual or family member of such indi16 vidual)’’. 

17 (2) NO DISCRIMINATION IN GROUP PREMIUMS

18 BASED ON GENETIC INFORMATION.—Section 702(b) 

19 of the Employee Retirement Income Security Act of 

20 1974 (29 U.S.C. 1182(b)) is amended— 

21 (A) in paragraph (2)(A), by inserting be22 fore the semicolon the following: ‘‘except as pro23 vided in paragraph (3)’’; and 

24 (B) by adding at the end the following: 
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1 ‘‘(3) NO DISCRIMINATION IN GROUP PREMIUMS

2 BASED ON GENETIC INFORMATION.—For purposes 

3 of this section, a group health plan, or a health in4 surance issuer offering group health insurance cov5 erage in connection with a group health plan, shall 

6 not adjust premium or contribution amounts for a 

7 group on the basis of genetic information concerning 

8 an individual in the group or a family member of the 

9 individual (including information about a request for 

10 or receipt of genetic services by an individual or 

11 family member of such individual).’’. 

12 (b) LIMITATIONS ON GENETIC TESTING.—Section 

13 702 of the Employee Retirement Income Security Act of 

14 1974 (29 U.S.C. 1182) is amended by adding at the end 

15 the following: 

16 ‘‘(c) GENETIC TESTING.— 

17 ‘‘(1) LIMITATION ON REQUESTING OR REQUIR18 ING GENETIC TESTING.—A group health plan, or a 

19 health insurance issuer offering health insurance 

20 coverage in connection with a group health plan, 

21 shall not request or require an individual or a family 

22 member of such individual to undergo a genetic test. 

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

24 this part shall be construed to— 
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1 ‘‘(A) limit the authority of a health care 

2 professional who is providing health care serv3 ices with respect to an individual to request 

4 that such individual or a family member of such 

5 individual undergo a genetic test; 

6 ‘‘(B) limit the authority of a health care 

7 professional who is employed by or affiliated 

8 with a group health plan or a health insurance 

9 issuer and who is providing health care services 

10 to an individual as part of a bona fide wellness 

11 program to notify such individual of the avail12 ability of a genetic test or to provide informa13 tion to such individual regarding such genetic 

14 test; or 

15 ‘‘(C) authorize or permit a health care pro16 fessional to require that an individual undergo 

17 a genetic test. 

18 ‘‘(d) APPLICATION TO ALL PLANS.—The provisions 

19 of subsections (a)(1)(F), (b)(3), and (c) shall apply to 

20 group health plans and health insurance issuers without 

21 regard to section 732(a).’’. 

22 (c) REMEDIES AND ENFORCEMENT.—Section 502 of 

23 the Employee Retirement Income Security Act of 1974 

24 (29 U.S.C. 1132) is amended by adding at the end the 

25 following: 
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1 ‘‘(n) ENFORCEMENT OF GENETIC NONDISCRIMINA2 TION REQUIREMENTS.— 

3 ‘‘(1) INJUNCTIVE RELIEF FOR IRREPARABLE

4 HARM.—With respect to any violation of subsection 

5 (a)(1)(F), (b)(3), or (c) of section 702, a participant 

6 or beneficiary may seek relief under subsection 

7 502(a)(1)(B) prior to the exhaustion of available ad8 ministrative remedies under section 503 if it is dem9 onstrated to the court, by a preponderance of the 

10 evidence, that the exhaustion of such remedies would 

11 cause irreparable harm to the health of the partici12 pant or beneficiary. Any determinations that already 

13 have been made under section 503 in such case, or 

14 that are made in such case while an action under 

15 this paragraph is pending, shall be given due consid16 eration by the court in any action under this sub17 section in such case. 

18 ‘‘(2) EQUITABLE RELIEF FOR GENETIC NON19 DISCRIMINATION.— 

20 ‘‘(A) REINSTATEMENT OF BENEFITS

21 WHERE EQUITABLE RELIEF HAS BEEN AWARD22 ED.—The recovery of benefits by a participant 

23 or beneficiary under a civil action under this 

24 section may include an administrative penalty 

25 under subparagraph (B) and the retroactive re-
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1 instatement of coverage under the plan involved 

2 to the date on which the participant or bene3 ficiary was denied eligibility for coverage if— 

4 ‘‘(i) the civil action was commenced 

5 under subsection (a)(1)(B); and 

6 ‘‘(ii) the denial of coverage on which 

7 such civil action was based constitutes a 

8 violation of subsection (a)(1)(F), (b)(3), or 

9 (c) of section 702. 

10 ‘‘(B) ADMINISTRATIVE PENALTY.— 

11 ‘‘(i) IN GENERAL.—An administrator 

12 who fails to comply with the requirements 

13 of subsection (a)(1)(F), (b)(3), or (c) of 

14 section 702 with respect to a participant or 

15 beneficiary may, in an action commenced 

16 under subsection (a)(1)(B), be personally 

17 liable in the discretion of the court, for a 

18 penalty in the amount not more than $100 

19 for each day in the noncompliance period. 

20 ‘‘(ii) NONCOMPLIANCE PERIOD.—For 

21 purposes of clause (i), the term ‘non22 compliance period’ means the period— 

23 ‘‘(I) beginning on the date that a 

24 failure described in clause (i) occurs; 

25 and 
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1 ‘‘(II) ending on the date that 

2 such failure is corrected. 

3 ‘‘(iii) PAYMENT TO PARTICIPANT OR

4 BENEFICIARY.—A penalty collected under 

5 this subparagraph shall be paid to the par6 ticipant or beneficiary involved. 

7 ‘‘(3) SECRETARIAL ENFORCEMENT AUTHOR8 ITY.— 

9 ‘‘(A) GENERAL RULE.—The Secretary has 

10 the authority to impose a penalty on any failure 

11 of a group health plan to meet the requirements 

12 of subsection (a)(1)(F), (b)(3), or (c) of section 

13 702. 

14 ‘‘(B) AMOUNT.— 

15 ‘‘(i) IN GENERAL.—The amount of 

16 the penalty imposed by subparagraph (A) 

17 shall be $100 for each day in the non18 compliance period with respect to each in19 dividual to whom such failure relates. 

20 ‘‘(ii) NONCOMPLIANCE PERIOD.—For 

21 purposes of this paragraph, the term ‘non22 compliance period’ means, with respect to 

23 any failure, the period— 

24 ‘‘(I) beginning on the date such 

25 failure first occurs; and 
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1 ‘‘(II) ending on the date such 

2 failure is corrected. 

3 ‘‘(C) MINIMUM PENALTIES WHERE FAIL4 URE DISCOVERED.—Notwithstanding clauses (i) 

5 and (ii) of subparagraph (D): 

6 ‘‘(i) IN GENERAL.—In the case of 1 or 

7 more failures with respect to an indi8 vidual— 

9 ‘‘(I) which are not corrected be10 fore the date on which the plan re11 ceives a notice from the Secretary of 

12 such violation; and 

13 ‘‘(II) which occurred or continued 

14 during the period involved; 

15 the amount of penalty imposed by subpara16 graph (A) by reason of such failures with 

17 respect to such individual shall not be less 

18 than $2,500. 

19 ‘‘(ii) HIGHER MINIMUM PENALTY

20 WHERE VIOLATIONS ARE MORE THAN DE

21 MINIMIS.—To the extent violations for 

22 which any person is liable under this para23 graph for any year are more than de mini24 mis, clause (i) shall be applied by sub-
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1 stituting ‘$15,000’ for ‘$2,500’ with re2 spect to such person. 

3 ‘‘(D) LIMITATIONS.— 

4 ‘‘(i) PENALTY NOT TO APPLY WHERE

5 FAILURE NOT DISCOVERED EXERCISING

6 REASONABLE DILIGENCE.—No penalty 

7 shall be imposed by subparagraph (A) on 

8 any failure during any period for which it 

9 is established to the satisfaction of the 

10 Secretary that the person otherwise liable 

11 for such penalty did not know, and exer12 cising reasonable diligence would not have 

13 known, that such failure existed. 

14 ‘‘(ii) PENALTY NOT TO APPLY TO

15 FAILURES CORRECTED WITHIN CERTAIN

16 PERIODS.—No penalty shall be imposed by 

17 subparagraph (A) on any failure if— 

18 ‘‘(I) such failure was due to rea19 sonable cause and not to willful ne20 glect; and 

21 ‘‘(II) such failure is corrected 

22 during the 30-day period beginning on 

23 the first date the person otherwise lia24 ble for such penalty knew, or exer-
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1 cising reasonable diligence would have 

2 known, that such failure existed. 

3 ‘‘(iii) OVERALL LIMITATION FOR UN4 INTENTIONAL FAILURES.—In the case of 

5 failures which are due to reasonable cause 

6 and not to willful neglect, the penalty im7 posed by subparagraph (A) for failures 

8 shall not exceed the amount equal to the 

9 lesser of— 

10 ‘‘(I) 10 percent of the aggregate 

11 amount paid or incurred by the em12 ployer (or predecessor employer) dur13 ing the preceding taxable year for 

14 group health plans; or 

15 ‘‘(II) $500,000. 

16 ‘‘(E) WAIVER BY SECRETARY.—In the case 

17 of a failure which is due to reasonable cause 

18 and not to willful neglect, the Secretary may 

19 waive part or all of the penalty imposed by sub20 paragraph (A) to the extent that the payment 

21 of such penalty would be excessive relative to 

22 the failure involved.’’. 

23 (d) DEFINITIONS.—Section 733(d) of the Employee 

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

25 1191b(d)) is amended by adding at the end the following: 
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1 ‘‘(5) FAMILY MEMBER.—The term ‘family 

2 member’ means with respect to an individual— 

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

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

5 including a child who is born to or placed for 

6 adoption with the individual; and 

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

8 to the individual or the spouse or child de9 scribed in subparagraph (A) or (B). 

10 ‘‘(6) GENETIC INFORMATION.— 

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

12 subparagraph (B), the term ‘genetic informa13 tion’ means information about— 

14 ‘‘(i) an individual’s genetic tests; 

15 ‘‘(ii) the genetic tests of family mem16 bers of the individual; or 

17 ‘‘(iii) the occurrence of a disease or 

18 disorder in family members of the indi19 vidual. 

20 ‘‘(B) EXCLUSIONS.—The term ‘genetic in21 formation’ shall not include information about 

22 the sex or age of an individual. 

23 ‘‘(7) GENETIC TEST.— 

24 ‘‘(A) IN GENERAL.—The term ‘genetic 

25 test’ means an analysis of human DNA, RNA, 
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1 chromosomes, proteins, or metabolites, that de2 tects genotypes, mutations, or chromosomal 

3 changes. 

4 ‘‘(B) EXCEPTIONS.—The term ‘genetic 

5 test’ does not mean— 

6 ‘‘(i) an analysis of proteins or metabo7 lites that does not detect genotypes, 

8 mutations, or chromosomal changes; or 

9 ‘‘(ii) an analysis of proteins or me10 tabolites that is directly related to a mani11 fested disease, disorder, or pathological 

12 condition that could reasonably be detected 

13 by a health care professional with appro14 priate training and expertise in the field of 

15 medicine involved. 

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

17 services’ means— 

18 ‘‘(A) a genetic test; 

19 ‘‘(B) genetic counseling (such as obtaining, 

20 interpreting, or assessing genetic information); 

21 or 

22 ‘‘(C) genetic education.’’. 

23 (e) REGULATIONS AND EFFECTIVE DATE.— 

24 (1) REGULATIONS.—Not later than 1 year after 

25 the date of enactment of this title, the Secretary of 
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1 Labor shall issue final regulations in an accessible 

2 format to carry out the amendments made by this 

3 section. 

4 (2) EFFECTIVE DATE.—The amendments made 

5 by this section shall apply with respect to group 

6 health plans for plan years beginning after the date 

7 that is 18 months after the date of enactment of 

8 this title. 

9 SEC. 102. AMENDMENTS TO THE PUBLIC HEALTH SERVICE 

10 ACT. 

11 (a) AMENDMENTS RELATING TO THE GROUP MAR12 KET.— 

13 (1) PROHIBITION OF HEALTH DISCRIMINATION

14 ON THE BASIS OF GENETIC INFORMATION OR GE15 NETIC SERVICES.— 

16 (A) NO ENROLLMENT RESTRICTION FOR

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

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

19 300gg–1(a)(1)(F)) is amended by inserting be20 fore the period the following: ‘‘(including infor21 mation about a request for or receipt of genetic 

22 services by an individual or family member of 

23 such individual)’’. 

24 (B) NO DISCRIMINATION IN GROUP PRE25 MIUMS BASED ON GENETIC INFORMATION.—
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1 Section 2702(b) of the Public Health Service 

2 Act (42 U.S.C. 300gg–1(b)) is amended— 

3 (i) in paragraph (2)(A), by inserting 

4 before the semicolon the following: ‘‘, ex5 cept as provided in paragraph (3)’’; and 

6 (ii) by adding at the end the fol7 lowing: 

8 ‘‘(3) NO DISCRIMINATION IN GROUP PREMIUMS

9 BASED ON GENETIC INFORMATION.—For purposes 

10 of this section, a group health plan, or a health in11 surance issuer offering group health insurance cov12 erage in connection with a group health plan, shall 

13 not adjust premium or contribution amounts for a 

14 group on the basis of genetic information concerning 

15 an individual in the group or a family member of the 

16 individual (including information about a request for 

17 or receipt of genetic services by an individual or 

18 family member of such individual).’’. 

19 (2) LIMITATIONS ON GENETIC TESTING.—Sec20 tion 2702 of the Public Health Service Act (42 

21 U.S.C. 300gg–1) is amended by adding at the end 

22 the following: 

23 ‘‘(c) GENETIC TESTING.— 

24 ‘‘(1) LIMITATION ON REQUESTING OR REQUIR25 ING GENETIC TESTING.—A group health plan, or a 
19

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1 health insurance issuer offering health insurance 

2 coverage in connection with a group health plan, 

3 shall not request or require an individual or a family 

4 member of such individual to undergo a genetic test. 

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

6 this part shall be construed to— 

7 ‘‘(A) limit the authority of a health care 

8 professional who is providing health care serv9 ices with respect to an individual to request 

10 that such individual or a family member of such 

11 individual undergo a genetic test; 

12 ‘‘(B) limit the authority of a health care 

13 professional who is employed by or affiliated 

14 with a group health plan or a health insurance 

15 issuer and who is providing health care services 

16 to an individual as part of a bona fide wellness 

17 program to notify such individual of the avail18 ability of a genetic test or to provide informa19 tion to such individual regarding such genetic 

20 test; or 

21 ‘‘(C) authorize or permit a health care pro22 fessional to require that an individual undergo 

23 a genetic test. 

24 ‘‘(d) APPLICATION TO ALL PLANS.—The provisions 

25 of subsections (a)(1)(F), (b)(3), and (c) shall apply to 
20

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1 group health plans and health insurance issuers without 

2 regard to section 2721(a).’’. 

3 (3) REMEDIES AND ENFORCEMENT.—Section 

4 2722(b) of the Public Health Service Act (42 U.S.C. 

5 300gg–22)(b)) is amended by adding at the end the 

6 following: 

7 ‘‘(3) ENFORCEMENT AUTHORITY RELATING TO

8 GENETIC DISCRIMINATION.— 

9 ‘‘(A) GENERAL RULE.—In the cases de10 scribed in paragraph (1), notwithstanding the 

11 provisions of paragraph (2)(C), the following 

12 provisions shall apply with respect to an action 

13 under this subsection by the Secretary with re14 spect to any failure of a health insurance issuer 

15 in connection with a group health plan, to meet 

16 the requirements of subsection (a)(1)(F), 

17 (b)(3), or (c) of section 2702. 

18 ‘‘(B) AMOUNT.— 

19 ‘‘(i) IN GENERAL.—The amount of 

20 the penalty imposed under this paragraph 

21 shall be $100 for each day in the non22 compliance period with respect to each in23 dividual to whom such failure relates. 

24 ‘‘(ii) NONCOMPLIANCE PERIOD.—For 

25 purposes of this paragraph, the term ‘non-
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1 compliance period’ means, with respect to 

2 any failure, the period— 

3 ‘‘(I) beginning on the date such 

4 failure first occurs; and 

5 ‘‘(II) ending on the date such 

6 failure is corrected. 

7 ‘‘(C) MINIMUM PENALTIES WHERE FAIL8 URE DISCOVERED.—Notwithstanding clauses (i) 

9 and (ii) of subparagraph (D): 

10 ‘‘(i) IN GENERAL.—In the case of 1 or 

11 more failures with respect to an indi12 vidual— 

13 ‘‘(I) which are not corrected be14 fore the date on which the plan re15 ceives a notice from the Secretary of 

16 such violation; and 

17 ‘‘(II) which occurred or continued 

18 during the period involved; 

19 the amount of penalty imposed by subpara20 graph (A) by reason of such failures with 

21 respect to such individual shall not be less 

22 than $2,500. 

23 ‘‘(ii) HIGHER MINIMUM PENALTY

24 WHERE VIOLATIONS ARE MORE THAN DE

25 MINIMIS.—To the extent violations for 
22

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1 which any person is liable under this para2 graph for any year are more than de mini3 mis, clause (i) shall be applied by sub4 stituting ‘$15,000’ for ‘$2,500’ with re5 spect to such person. 

6 ‘‘(D) LIMITATIONS.— 

7 ‘‘(i) PENALTY NOT TO APPLY WHERE

8 FAILURE NOT DISCOVERED EXERCISING

9 REASONABLE DILIGENCE.—No penalty 

10 shall be imposed by subparagraph (A) on 

11 any failure during any period for which it 

12 is established to the satisfaction of the 

13 Secretary that the person otherwise liable 

14 for such penalty did not know, and exer15 cising reasonable diligence would not have 

16 known, that such failure existed. 

17 ‘‘(ii) PENALTY NOT TO APPLY TO

18 FAILURES CORRECTED WITHIN CERTAIN

19 PERIODS.—No penalty shall be imposed by 

20 subparagraph (A) on any failure if— 

21 ‘‘(I) such failure was due to rea22 sonable cause and not to willful ne23 glect; and 

24 ‘‘(II) such failure is corrected 

25 during the 30-day period beginning on 
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1 the first date the person otherwise lia2 ble for such penalty knew, or exer3 cising reasonable diligence would have 

4 known, that such failure existed. 

5 ‘‘(iii) OVERALL LIMITATION FOR UN6 INTENTIONAL FAILURES.—In the case of 

7 failures which are due to reasonable cause 

8 and not to willful neglect, the penalty im9 posed by subparagraph (A) for failures 

10 shall not exceed the amount equal to the 

11 lesser of— 

12 ‘‘(I) 10 percent of the aggregate 

13 amount paid or incurred by the em14 ployer (or predecessor employer) dur15 ing the preceding taxable year for 

16 group health plans; or 

17 ‘‘(II) $500,000. 

18 ‘‘(E) WAIVER BY SECRETARY.—In the case 

19 of a failure which is due to reasonable cause 

20 and not to willful neglect, the Secretary may 

21 waive part or all of the penalty imposed by sub22 paragraph (A) to the extent that the payment 

23 of such penalty would be excessive relative to 

24 the failure involved.’’. 
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1 (4) DEFINITIONS.—Section 2791(d) of the Pub2 lic Health Service Act (42 U.S.C. 300gg–91(d)) is 

3 amended by adding at the end the following: 

4 ‘‘(15) 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 ‘‘(16) GENETIC INFORMATION.— 

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

15 subparagraph (B), the term ‘genetic informa16 tion’ means information about— 

17 ‘‘(i) an individual’s genetic tests; 

18 ‘‘(ii) the genetic tests of family mem19 bers of the individual; or 

20 ‘‘(iii) the occurrence of a disease or 

21 disorder in family members of the indi22 vidual. 

23 ‘‘(B) EXCLUSIONS.—The term ‘genetic in24 formation’ shall not include information about 

25 the sex or age of an individual. 
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1 ‘‘(17) GENETIC TEST.— 

2 ‘‘(A) IN GENERAL.—The term ‘genetic 

3 test’ means an analysis of human DNA, RNA, 

4 chromosomes, proteins, or metabolites, that de5 tects genotypes, mutations, or chromosomal 

6 changes. 

7 ‘‘(B) EXCEPTIONS.—The term ‘genetic 

8 test’ does not mean— 

9 ‘‘(i) an analysis of proteins or metabo10 lites that does not detect genotypes, 

11 mutations, or chromosomal changes; or 

12 ‘‘(ii) an analysis of proteins or me13 tabolites that is directly related to a mani14 fested disease, disorder, or pathological 

15 condition that could reasonably be detected 

16 by a health care professional with appro17 priate training and expertise in the field of 

18 medicine involved. 

19 ‘‘(18) GENETIC SERVICES.—The term ‘genetic 

20 services’ means— 

21 ‘‘(A) a genetic test; 

22 ‘‘(B) genetic counseling (such as obtaining, 

23 interpreting, or assessing genetic information); 

24 or 

25 ‘‘(C) genetic education.’’. 
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1 (b) AMENDMENT RELATING TO THE INDIVIDUAL

2 MARKET.— 

3 (1) IN GENERAL.—The first subpart 3 of part 

4 B of title XXVII of the Public Health Service Act 

5 (42 U.S.C. 300gg–51 et seq.) (relating to other re6 quirements) is amended— 

7 (A) by redesignating such subpart as sub8 part 2; and 

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

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

11 THE BASIS OF GENETIC INFORMATION. 

12 ‘‘(a) PROHIBITION ON GENETIC INFORMATION AS A

13 CONDITION OF ELIGIBILITY.—A health insurance issuer 

14 offering health insurance coverage in the individual mar15 ket may not establish rules for the eligibility (including 

16 continued eligibility) of any individual to enroll in indi17 vidual health insurance coverage based on genetic infor18 mation (including information about a request for or re19 ceipt of genetic services by an individual or family member 

20 of such individual). 

21 ‘‘(b) PROHIBITION ON GENETIC INFORMATION IN

22 SETTING PREMIUM RATES.—A health insurance issuer of23 fering health insurance coverage in the individual market 

24 shall not adjust premium or contribution amounts for an 

25 individual on the basis of genetic information concerning 
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1 the individual or a family member of the individual (in2 cluding information about a request for or receipt of ge3 netic services by an individual or family member of such 

4 individual). 

5 ‘‘(c) GENETIC TESTING.— 

6 ‘‘(1) LIMITATION ON REQUESTING OR REQUIR7 ING GENETIC TESTING.—A health insurance issuer 

8 offering health insurance coverage in the individual 

9 market shall not request or require an individual or 

10 a family member of such individual to undergo a ge11 netic test. 

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

13 this part shall be construed to— 

14 ‘‘(A) limit the authority of a health care 

15 professional who is providing health care serv16 ices with respect to an individual to request 

17 that such individual or a family member of such 

18 individual undergo a genetic test; 

19 ‘‘(B) limit the authority of a health care 

20 professional who is employed by or affiliated 

21 with a health insurance issuer and who is pro22 viding health care services to an individual as 

23 part of a bona fide wellness program to notify 

24 such individual of the availability of a genetic 
28

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1 test or to provide information to such individual 

2 regarding such genetic test; or 

3 ‘‘(C) authorize or permit a health care pro4 fessional to require that an individual undergo 

5 a genetic test.’’. 

6 (2) REMEDIES AND ENFORCEMENT.—Section 

7 2761(b) of the Public Health Service Act (42 U.S.C. 

8 300gg–61)(b)) is amended to read as follows: 

9 ‘‘(b) SECRETARIAL ENFORCEMENT AUTHORITY.—

10 The Secretary shall have the same authority in relation 

11 to enforcement of the provisions of this part with respect 

12 to issuers of health insurance coverage in the individual 

13 market in a State as the Secretary has under section 

14 2722(b)(2), and section 2722(b)(3) with respect to viola15 tions of genetic nondiscrimination provisions, in relation 

16 to the enforcement of the provisions of part A with respect 

17 to issuers of health insurance coverage in the small group 

18 market in the State.’’. 

19 (c) ELIMINATION OF OPTION OF NON-FEDERAL

20 GOVERNMENTAL PLANS TO BE EXCEPTED FROM RE21 QUIREMENTS CONCERNING GENETIC INFORMATION.—

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

23 U.S. C. 300gg–21(b)(2)) is amended— 
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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) and (c) of 

10 section 2702 and the provisions of section 

11 2702(b) to the extent that such provisions 

12 apply to genetic information (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 (d) REGULATIONS AND EFFECTIVE DATE.— 

17 (1) REGULATIONS.—Not later than 1 year after 

18 the date of enactment of this title, the Secretary of 

19 Labor and the Secretary of Health and Human 

20 Services (as the case may be) shall issue final regu21 lations in an accessible format to carry out the 

22 amendments made by this section. 

23 (2) EFFECTIVE DATE.—The amendments made 

24 by this section shall apply— 
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1 (A) with respect to group health plans, and 

2 health insurance coverage offered in connection 

3 with group health plans, for plan years begin4 ning after the date that is 18 months after the 

5 date of enactment of this title; and 

6 (B) with respect to health insurance cov7 erage offered, sold, issued, renewed, in effect, or 

8 operated in the individual market after the date 

9 that is 18 months after the date of enactment 

10 of this title. 

11 SEC. 103. AMENDMENTS TO THE INTERNAL REVENUE CODE 

12 OF 1986. 

13 (a) PROHIBITION OF HEALTH DISCRIMINATION ON

14 THE BASIS OF GENETIC INFORMATION OR GENETIC

15 SERVICES.— 

16 (1) NO ENROLLMENT RESTRICTION FOR GE17 NETIC SERVICES.—Section 9802(a)(1)(F) of the In18 ternal Revenue Code of 1986 is amended by insert19 ing before the period the following: ‘‘(including in20 formation about a request for or receipt of genetic 

21 services by an individual or family member of such 

22 individual)’’. 

23 (2) NO DISCRIMINATION IN GROUP PREMIUMS

24 BASED ON GENETIC INFORMATION.—Section 
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1 9802(b) of the Internal Revenue Code of 1986 is 

2 amended— 

3 (A) in paragraph (2)(A), by inserting be4 fore the semicolon the following: ‘‘, except as 

5 provided in paragraph (3)’’; and 

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

7 ‘‘(3) NO DISCRIMINATION IN GROUP PREMIUMS

8 BASED ON GENETIC INFORMATION.—For purposes 

9 of this section, a group health plan shall not adjust 

10 premium or contribution amounts for a group on the 

11 basis of genetic information concerning an individual 

12 in the group or a family member of the individual 

13 (including information about a request for or receipt 

14 of genetic services by an individual or family mem15 ber of such individual).’’. 

16 (b) LIMITATIONS ON GENETIC TESTING.—Section 

17 9802 of the Internal Revenue Code of 1986 is amended 

18 by adding at the end the following: 

19 ‘‘(d) GENETIC TESTING AND GENETIC SERVICES.— 

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

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 part shall be construed to— 
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1 ‘‘(A) limit the authority of a health care 

2 professional who is providing health care serv3 ices with respect to an individual to request 

4 that such individual or a family member of such 

5 individual undergo a genetic test; 

6 ‘‘(B) limit the authority of a health care 

7 professional who is employed by or affiliated 

8 with a group health plan and who is providing 

9 health care services to an individual as part of 

10 a bona fide wellness program to notify such in11 dividual of the availability of a genetic test or 

12 to provide information to such individual re13 garding such genetic test; or 

14 ‘‘(C) authorize or permit a health care pro15 fessional to require that an individual undergo 

16 a genetic test. 

17 ‘‘(e) APPLICATION TO ALL PLANS.—The provisions 

18 of subsections (a)(1)(F), (b)(3), and (d) shall apply to 

19 group health plans and health insurance issuers without 

20 regard to section 9831(a)(2).’’. 

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

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

23 the following: 

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

25 member’ means with respect to an individual— 
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1 ‘‘(A) the spouse of the individual; 

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

3 including a child who is born to or placed for 

4 adoption with the individual; and 

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

6 to the individual or the spouse or child de7 scribed in subparagraph (A) or (B). 

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

9 services’ means— 

10 ‘‘(A) a genetic test; 

11 ‘‘(B) genetic counseling (such as obtaining, 

12 interpreting, or assessing genetic information); 

13 or 

14 ‘‘(C) genetic education. 

15 ‘‘(8) GENETIC INFORMATION.— 

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

17 subparagraph (B), the term ‘genetic informa18 tion’ means information about— 

19 ‘‘(i) an individual’s genetic tests; 

20 ‘‘(ii) the genetic tests of family mem21 bers of the individual; or 

22 ‘‘(iii) the occurrence of a disease or 

23 disorder in family members of the indi24 vidual. 
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1 ‘‘(B) EXCLUSIONS.—The term ‘genetic in2 formation’ shall not include information about 

3 the sex or age of an individual. 

4 ‘‘(9) GENETIC TEST.— 

5 ‘‘(A) IN GENERAL.—The term ‘genetic 

6 test’ means an analysis of human DNA, RNA, 

7 chromosomes, proteins, or metabolites, that de8 tects genotypes, mutations, or chromosomal 

9 changes. 

10 ‘‘(B) EXCEPTIONS.—The term ‘genetic 

11 test’ does not mean— 

12 ‘‘(i) an analysis of proteins or metabo13 lites that does not detect genotypes, 

14 mutations, or chromosomal changes; or 

15 ‘‘(ii) an analysis of proteins or me16 tabolites that is directly related to a mani17 fested disease, disorder, or pathological 

18 condition that could reasonably be detected 

19 by a health care professional with appro20 priate training and expertise in the field of 

21 medicine involved.’’. 

22 (d) REGULATIONS AND EFFECTIVE DATE.— 

23 (1) REGULATIONS.—Not later than 1 year after 

24 the date of enactment of this title, the Secretary of 

25 the Treasury shall issue final regulations in an ac-
35

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1 cessible format to carry out the amendments made 

2 by this section. 

3 (2) EFFECTIVE DATE.—The amendments made 

4 by this section shall apply with respect to group 

5 health plans for plan years beginning after the date 

6 that is 18 months after the date of enactment of 

7 this title. 

8 SEC. 104. AMENDMENTS TO TITLE XVIII OF THE SOCIAL SE9 CURITY ACT RELATING TO MEDIGAP. 

10 (a) NONDISCRIMINATION.— 

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

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

13 amended by adding at the end the following: 

14 ‘‘(E)(i) An issuer of a medicare supple15 mental policy shall not deny or condition the 

16 issuance or effectiveness of the policy, and shall 

17 not discriminate in the pricing of the policy (in18 cluding the adjustment of premium rates) of an 

19 eligible individual on the basis of genetic infor20 mation concerning the individual (or informa21 tion about a request for, or the receipt of, ge22 netic services by such individual or family mem23 ber of such individual). 

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

25 ‘family member’, ‘genetic services’, and ‘genetic 
36

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1 information’ shall have the meanings given such 

2 terms in subsection (v).’’. 

3 (2) EFFECTIVE DATE.—The amendment made 

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

5 for policy years beginning after the date that is 18 

6 months after the date of enactment of this Act. 

7 (b) LIMITATIONS ON GENETIC TESTING.— 

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

9 Security Act (42 U.S.C. 1395ss) is amended by add10 ing at the end the following: 

11 ‘‘(v) LIMITATIONS ON GENETIC TESTING.— 

12 ‘‘(1) GENETIC TESTING.— 

13 ‘‘(A) LIMITATION ON REQUESTING OR RE14 QUIRING GENETIC TESTING.—An issuer of a 

15 medicare supplemental policy shall not request 

16 or require an individual or a family member of 

17 such individual to undergo a genetic test. 

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

19 in this title shall be construed to— 

20 ‘‘(i) limit the authority of a health 

21 care professional who is providing health 

22 care services with respect to an individual 

23 to request that such individual or a family 

24 member of such individual undergo a ge25 netic test; 
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1 ‘‘(ii) limit the authority of a health 

2 care professional who is employed by or af3 filiated with an issuer of a medicare sup4 plemental policy and who is providing 

5 health care services to an individual as 

6 part of a bona fide wellness program to no7 tify such individual of the availability of a 

8 genetic test or to provide information to 

9 such individual regarding such genetic test; 

10 or 

11 ‘‘(iii) authorize or permit a health 

12 care professional to require that an indi13 vidual undergo a genetic test. 

14 ‘‘(2) DEFINITIONS.—In this subsection: 

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

16 member’ means with respect to an individual— 

17 ‘‘(i) the spouse of the individual; 

18 ‘‘(ii) a dependent child of the indi19 vidual, including a child who is born to or 

20 placed for adoption with the individual; or 

21 ‘‘(iii) any other individuals related by 

22 blood to the individual or to the spouse or 

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

24 ‘‘(B) GENETIC INFORMATION.— 
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1 ‘‘(i) IN GENERAL.—Except as pro2 vided in clause (ii), the term ‘genetic infor3 mation’ means information about— 

4 ‘‘(I) an individual’s genetic tests; 

5 ‘‘(II) the genetic tests of family 

6 members of the individual; or 

7 ‘‘(III) the occurrence of a disease 

8 or disorder in family members of the 

9 individual. 

10 ‘‘(ii) EXCLUSIONS.—The term ‘genetic 

11 information’ shall not include information 

12 about the sex or age of an individual. 

13 ‘‘(C) GENETIC TEST.— 

14 ‘‘(i) IN GENERAL.—The term ‘genetic 

15 test’ means an analysis of human DNA, 

16 RNA, chromosomes, proteins, or metabo17 lites, that detects genotypes, mutations, or 

18 chromosomal changes. 

19 ‘‘(ii) EXCEPTIONS.—The term ‘genetic 

20 test’ does not mean— 

21 ‘‘(I) an analysis of proteins or 

22 metabolites that does not detect 

23 genotypes, mutations, or chromosomal 

24 changes; or 
39

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1 ‘‘(II) an analysis of proteins or 

2 metabolites that is directly related to 

3 a manifested disease, disorder, or 

4 pathological condition that could rea5 sonably be detected by a health care 

6 professional with appropriate training 

7 and expertise in the field of medicine 

8 involved. 

9 ‘‘(D) GENETIC SERVICES.—The term ‘ge10 netic services’ means— 

11 ‘‘(i) a genetic test; 

12 ‘‘(ii) genetic counseling (such as ob13 taining, interpreting, or assessing genetic 

14 information); or 

15 ‘‘(iii) genetic education. 

16 ‘‘(E) ISSUER OF A MEDICARE SUPPLE17 MENTAL POLICY.—The term ‘issuer of a medi18 care supplemental policy’ includes a third-party 

19 administrator or other person acting for or on 

20 behalf of such issuer.’’. 

21 (2) CONFORMING AMENDMENT.—Section 

22 1882(o) of the Social Security Act (42 U.S.C. 

23 1395ss(o)) is amended by adding at the end the fol24 lowing: 
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1 ‘‘(4) The issuer of the medicare supplemental 

2 policy complies with subsection (s)(2)(E) and sub3 section (v).’’. 

4 (3) EFFECTIVE DATE.—The amendments made 

5 by this subsection shall apply with respect to an 

6 issuer of a medicare supplemental policy for policy 

7 years beginning on or after the date that is 18 

8 months after the date of enactment of this Act. 

9 (c) TRANSITION PROVISIONS.— 

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

11 and Human Services identifies a State as requiring 

12 a change to its statutes or regulations to conform its 

13 regulatory program to the changes made by this sec14 tion, the State regulatory program shall not be con15 sidered to be out of compliance with the require16 ments of section 1882 of the Social Security Act due 

17 solely to failure to make such change until the date 

18 specified in paragraph (4). 

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

20 30, 2006, the National Association of Insurance 

21 Commissioners (in this subsection referred to as the 

22 ‘‘NAIC’’) modifies its NAIC Model Regulation relat23 ing to section 1882 of the Social Security Act (re24 ferred to in such section as the 1991 NAIC Model 

25 Regulation, as subsequently modified) to conform to 
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1 the amendments made by this section, such revised 

2 regulation incorporating the modifications shall be 

3 considered to be the applicable NAIC model regula4 tion (including the revised NAIC model regulation 

5 and the 1991 NAIC Model Regulation) for the pur6 poses of such section. 

7 (3) SECRETARY STANDARDS.—If the NAIC 

8 does not make the modifications described in para9 graph (2) within the period specified in such para10 graph, the Secretary of Health and Human Services 

11 shall, not later than October 1, 2006, make the 

12 modifications described in such paragraph and such 

13 revised regulation incorporating the modifications 

14 shall be considered to be the appropriate regulation 

15 for the purposes of such section. 

16 (4) DATE SPECIFIED.— 

17 (A) IN GENERAL.—Subject to subpara18 graph (B), the date specified in this paragraph 

19 for a State is the earlier of— 

20 (i) the date the State changes its stat21 utes or regulations to conform its regu22 latory program to the changes made by 

23 this section, or 

24 (ii) October 1, 2006. 
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1 (B) ADDITIONAL LEGISLATIVE ACTION RE2 QUIRED.—In the case of a State which the Sec3 retary identifies as— 

4 (i) requiring State legislation (other 

5 than legislation appropriating funds) to 

6 conform its regulatory program to the 

7 changes made in this section, but 

8 (ii) having a legislature which is not 

9 scheduled to meet in 2006 in a legislative 

10 session in which such legislation may be 

11 considered, the date specified in this para12 graph is the first day of the first calendar 

13 quarter beginning after the close of the 

14 first legislative session of the State legisla15 ture that begins on or after July 1, 2006. 

16 For purposes of the previous sentence, in 

17 the case of a State that has a 2-year legis18 lative session, each year of such session 

19 shall be deemed to be a separate regular 

20 session of the State legislature. 

21 SEC. 105. PRIVACY AND CONFIDENTIALITY. 

22 (a) APPLICABILITY.—Except as provided in sub23 section (d), the provisions of this section shall apply to 

24 group health plans, health insurance issuers (including 

25 issuers in connection with group health plans or individual 
43

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1 health coverage), and issuers of medicare supplemental 

2 policies, without regard to— 

3 (1) section 732(a) of the Employee Retirement 

4 Income Security Act of 1974 (29 U.S.C. 1191a(a)); 

5 (2) section 2721(a) of the Public Health Serv6 ice Act (42 U.S.C. 300gg–21(a)); and 

7 (3) section 9831(a)(2) of the Internal Revenue 

8 Code of 1986. 

9 (b) COMPLIANCE WITH CERTAIN CONFIDENTIALITY

10 STANDARDS WITH RESPECT TO GENETIC INFORMA11 TION.— 

12 (1) IN GENERAL.—The regulations promulgated 

13 by the Secretary of Health and Human Services 

14 under part C of title XI of the Social Security Act 

15 (42 U.S.C. 1320d et seq.) and section 264 of the 

16 Health Insurance Portability and Accountability Act 

17 of 1996 (42 U.S.C. 1320d–2 note) shall apply to the 

18 use or disclosure of genetic information. 

19 (2) PROHIBITION ON UNDERWRITING AND PRE20 MIUM RATING.—Notwithstanding paragraph (1), a 

21 group health plan, a health insurance issuer, or 

22 issuer of a medicare supplemental policy shall not 

23 use or disclose genetic information (including infor24 mation about a request for or a receipt of genetic 

25 services by an individual or family member of such 
44

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1 individual) for purposes of underwriting, determina2 tions of eligibility to enroll, premium rating, or the 

3 creation, renewal or replacement of a plan, contract 

4 or coverage for health insurance or health benefits. 

5 (c) PROHIBITION ON COLLECTION OF GENETIC IN6 FORMATION.— 

7 (1) IN GENERAL.—A group health plan, health 

8 insurance issuer, or issuer of a medicare supple9 mental policy shall not request, require, or purchase 

10 genetic information (including information about a 

11 request for or a receipt of genetic services by an in12 dividual or family member of such individual) for 

13 purposes of underwriting, determinations of eligi14 bility to enroll, premium rating, or the creation, re15 newal or replacement of a plan, contract or coverage 

16 for health insurance or health benefits. 

17 (2) LIMITATION RELATING TO THE COLLEC18 TION OF GENETIC INFORMATION PRIOR TO ENROLL19 MENT.—A group health plan, health insurance 

20 issuer, or issuer of a medicare supplemental policy 

21 shall not request, require, or purchase genetic infor22 mation (including information about a request for or 

23 a receipt of genetic services by an individual or fam24 ily member of such individual) concerning a partici25 pant, beneficiary, or enrollee prior to the enrollment, 
45

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1 and in connection with such enrollment, of such indi2 vidual under the plan, coverage, or policy. 

3 (3) INCIDENTAL COLLECTION.—Where a group 

4 health plan, health insurance issuer, or issuer of a 

5 medicare supplemental policy obtains genetic infor6 mation incidental to the requesting, requiring, or 

7 purchasing of other information concerning a partic8 ipant, beneficiary, or enrollee, such request, require9 ment, or purchase shall not be considered a violation 

10 of this subsection if— 

11 (A) such request, requirement, or purchase 

12 is not in violation of paragraph (1); and 

13 (B) any genetic information (including in14 formation about a request for or receipt of ge15 netic services) requested, required, or purchased 

16 is not used or disclosed in violation of sub17 section (b). 

18 (d) APPLICATION OF CONFIDENTIALITY STAND19 ARDS.—The provisions of subsections (b) and (c) shall not 

20 apply— 

21 (1) to group health plans, health insurance 

22 issuers, or issuers of medicare supplemental policies 

23 that are not otherwise covered under the regulations 

24 promulgated by the Secretary of Health and Human 

25 Services under part C of title XI of the Social Secu-
46

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1 rity Act (42 U.S.C. 1320d et seq.) and section 264 

2 of the Health Insurance Portability and Account3 ability Act of 1996 (42 U.S.C. 1320d–2 note); and 

4 (2) to genetic information that is not considered 

5 to be individually-identifiable health information 

6 under the regulations promulgated by the Secretary 

7 of Health and Human Services under part C of title 

8 XI of the Social Security Act (42 U.S.C. 1320d et 

9 seq.) and section 264 of the Health Insurance Port10 ability and Accountability Act of 1996 (42 U.S.C. 

11 1320d–2 note). 

12 (e) ENFORCEMENT.—A group health plan, health in13 surance issuer, or issuer of a medicare supplemental policy 

14 that violates a provision of this section shall be subject 

15 to the penalties described in sections 1176 and 1177 of 

16 the Social Security Act (42 U.S.C. 1320d–5 and 1320d–

17 6) in the same manner and to the same extent that such 

18 penalties apply to violations of part C of title XI of such 

19 Act. 

20 (f) PREEMPTION.— 

21 (1) IN GENERAL.—A provision or requirement 

22 under this section or a regulation promulgated under 

23 this section shall supersede any contrary provision of 

24 State law unless such provision of State law imposes 

25 requirements, standards, or implementation speci-
47

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1 fications that are more stringent than the require2 ments, standards, or implementation specifications 

3 imposed under this section or such regulations. No 

4 penalty, remedy, or cause of action to enforce such 

5 a State law that is more stringent shall be pre6 empted by this section. 

7 (2) RULE OF CONSTRUCTION.—Nothing in 

8 paragraph (1) shall be construed to establish a pen9 alty, remedy, or cause of action under State law if 

10 such penalty, remedy, or cause of action is not oth11 erwise available under such State law. 

12 (g) COORDINATION WITH PRIVACY REGULATIONS.—

13 The Secretary shall implement and administer this section 

14 in a manner that is consistent with the implementation 

15 and administration by the Secretary of the regulations 

16 promulgated by the Secretary of Health and Human Serv17 ices under part C of title XI of the Social Security Act 

18 (42 U.S.C. 1320d et seq.) and section 264 of the Health 

19 Insurance Portability and Accountability Act of 1996 (42 

20 U.S.C. 1320d–2 note). 

21 (h) DEFINITIONS.—In this section: 

22 (1) GENETIC INFORMATION; GENETIC SERV23 ICES.—The terms ‘‘family member’’, ‘‘genetic infor24 mation’’, ‘‘genetic services’’, and ‘‘genetic test’’ have 

25 the meanings given such terms in section 2791 of 
48

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

2 91), as amended by this Act. 

3 (2) GROUP HEALTH PLAN; HEALTH INSURANCE

4 ISSUER.—The terms ‘‘group health plan’’ and 

5 ‘‘health insurance issuer’’ include only those plans 

6 and issuers that are covered under the regulations 

7 described in subsection (d)(1). 

8 (3) ISSUER OF A MEDICARE SUPPLEMENTAL

9 POLICY.—The term ‘‘issuer of a medicare supple10 mental policy’’ means an issuer described in section 

11 1882 of the Social Security Act (42 insert 1395ss). 

12 (4) SECRETARY.—The term ‘‘Secretary’’ means 

13 the Secretary of Health and Human Services. 

14 SEC. 106. ASSURING COORDINATION. 

15 (a) IN GENERAL.—Except as provided in subsection 

16 (b), the Secretary of the Treasury, the Secretary of Health 

17 and Human Services, and the Secretary of Labor shall en18 sure, through the execution of an interagency memo19 randum of understanding among such Secretaries, that— 

20 (1) regulations, rulings, and interpretations 

21 issued by such Secretaries relating to the same mat22 ter over which two or more such Secretaries have re23 sponsibility under this title (and the amendments 

24 made by this title) are administered so as to have 

25 the same effect at all times; and 
49

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1 (2) coordination of policies relating to enforcing 

2 the same requirements through such Secretaries in 

3 order to have a coordinated enforcement strategy 

4 that avoids duplication of enforcement efforts and 

5 assigns priorities in enforcement. 

6 (b) AUTHORITY OF THE SECRETARY.—The Secretary 

7 of Health and Human Services has the sole authority to 

8 promulgate regulations to implement section 105. 

9 SEC. 107. REGULATIONS; EFFECTIVE DATE. 

10 (a) REGULATIONS.—Not later than 1 year after the 

11 date of enactment of this title, the Secretary of Labor, 

12 the Secretary of Health and Human Services, and the Sec13 retary of the Treasury shall issue final regulations in an 

14 accessible format to carry out this title. 

15 (b) EFFECTIVE DATE.—Except as provided in sec16 tion 104, the amendments made by this title shall take 

17 effect on the date that is 18 months after the date of en18 actment of this Act. 

19 TITLE II—PROHIBITING EM20 PLOYMENT DISCRIMINATION 

21 ON THE BASIS OF GENETIC 

22 INFORMATION 

23 SEC. 201. DEFINITIONS. 

24 In this title: 
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1 (1) COMMISSION.—The term ‘‘Commission’’ 

2 means the Equal Employment Opportunity Commis3 sion as created by section 705 of the Civil Rights 

4 Act of 1964 (42 U.S.C. 2000e–4). 

5 (2) EMPLOYEE; EMPLOYER; EMPLOYMENT

6 AGENCY; LABOR ORGANIZATION; MEMBER.— 

7 (A) IN GENERAL.—The term ‘‘employee’’ 

8 means— 

9 (i) an employee (including an appli10 cant), as defined in section 701(f) of the 

11 Civil Rights Act of 1964 (42 U.S.C. 

12 2000e(f)); 

13 (ii) a State employee (including an ap14 plicant) described in section 304(a) of the 

15 Government Employee Rights Act of 1991 

16 (42 U.S.C. 2000e–16c(a)); 

17 (iii) a covered employee (including an 

18 applicant), as defined in section 101 of the 

19 Congressional Accountability Act of 1995 

20 (2 U.S.C. 1301); 

21 (iv) a covered employee (including an 

22 applicant), as defined in section 411(c) of 

23 title 3, United States Code; or 
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1 (v) an employee or applicant to which 

2 section 717(a) of the Civil Rights Act of 

3 1964 (42 U.S.C. 2000e–16(a)) applies. 

4 (B) EMPLOYER.—The term ‘‘employer’’ 

5 means— 

6 (i) an employer (as defined in section 

7 701(b) of the Civil Rights Act of 1964 (42 

8 U.S.C. 2000e(b)); 

9 (ii) an entity employing a State em10 ployee described in section 304(a) of the 

11 Government Employee Rights Act of 1991; 

12 (iii) an employing office, as defined in 

13 section 101 of the Congressional Account14 ability Act of 1995; 

15 (iv) an employing office, as defined in 

16 section 411(c) of title 3, United States 

17 Code; or 

18 (v) an entity to which section 717(a) 

19 of the Civil Rights Act of 1964 applies. 

20 (C) EMPLOYMENT AGENCY; LABOR ORGA21 NIZATION.—The terms ‘‘employment agency’’ 

22 and ‘‘labor organization’’ have the meanings 

23 given the terms in section 701 of the Civil 

24 Rights Act of 1964 (42 U.S.C. 2000e). 
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1 (D) MEMBER.—The term ‘‘member’’, with 

2 respect to a labor organization, includes an ap3 plicant for membership in a labor organization. 

4 (3) FAMILY MEMBER.—The term ‘‘family mem5 ber’’ means with respect to an individual— 

6 (A) the spouse of the individual; 

7 (B) a dependent child of the individual, in8 cluding a child who is born to or placed for 

9 adoption with the individual; and 

10 (C) all other individuals related by blood to 

11 the individual or the spouse or child described 

12 in subparagraph (A) or (B). 

13 (4) GENETIC INFORMATION.— 

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

15 subparagraph (B), the term ‘‘genetic informa16 tion’’ means information about— 

17 (i) an individual’s genetic tests; 

18 (ii) the genetic tests of family mem19 bers of the individual; or 

20 (iii) the occurrence of a disease or dis21 order in family members of the individual. 

22 (B) EXCEPTIONS.—The term ‘‘genetic in23 formation’’ shall not include information about 

24 the sex or age of an individual. 
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1 (5) GENETIC MONITORING.—The term ‘‘genetic 

2 monitoring’’ means the periodic examination of em3 ployees to evaluate acquired modifications to their 

4 genetic material, such as chromosomal damage or 

5 evidence of increased occurrence of mutations, that 

6 may have developed in the course of employment due 

7 to exposure to toxic substances in the workplace, in 

8 order to identify, evaluate, and respond to the ef9 fects of or control adverse environmental exposures 

10 in the workplace. 

11 (6) GENETIC SERVICES.—The term ‘‘genetic 

12 services’’ means— 

13 (A) a genetic test; 

14 (B) genetic counseling (such as obtaining, 

15 interpreting or assessing genetic information); 

16 or 

17 (C) genetic education. 

18 (7) GENETIC TEST.— 

19 (A) IN GENERAL.—The term ‘‘genetic 

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

21 chromosomes, proteins, or metabolites, that de22 tects genotypes, mutations, or chromosomal 

23 changes. 

24 (B) EXCEPTION.—The term ‘‘genetic test’’ 

25 does not mean an analysis of proteins or me-
54

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1 tabolites that does not detect genotypes, 

2 mutations, or chromosomal changes. 

3 SEC. 202. EMPLOYER PRACTICES. 

4 (a) USE OF GENETIC INFORMATION.—It shall be an 

5 unlawful employment practice for an employer— 

6 (1) to fail or refuse to hire or to discharge any 

7 employee, or otherwise to discriminate against any 

8 employee with respect to the compensation, terms, 

9 conditions, or privileges of employment of the em10 ployee, because of genetic information with respect 

11 to the employee (or information about a request for 

12 or the receipt of genetic services by such employee 

13 or family member of such employee); or 

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

15 of the employer in any way that would deprive or 

16 tend to deprive any employee of employment oppor17 tunities or otherwise adversely affect the status of 

18 the employee as an employee, because of genetic in19 formation with respect to the employee (or informa20 tion about a request for or the receipt of genetic 

21 services by such employee or family member of such 

22 employee). 

23 (b) ACQUISITION OF GENETIC INFORMATION.—It 

24 shall be an unlawful employment practice for an employer 

25 to request, require, or purchase genetic information with 
55

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1 respect to an employee or a family member of the em2 ployee (or information about a request for the receipt of 

3 genetic services by such employee or a family member of 

4 such employee) except— 

5 (1) where an employer inadvertently requests or 

6 requires family medical history of the employee or 

7 family member of the employee; 

8 (2) where— 

9 (A) health or genetic services are offered 

10 by the employer, including such services offered 

11 as part of a bona fide wellness program; 

12 (B) the employee provides prior, knowing, 

13 voluntary, and written authorization; 

14 (C) only the employee (or family member 

15 if the family member is receiving genetic serv16 ices) and the licensed health care professional 

17 or board certified genetic counselor involved in 

18 providing such services receive individually iden19 tifiable information concerning the results of 

20 such services; and 

21 (D) any individually identifiable genetic in22 formation provided under subparagraph (C) in 

23 connection with the services provided under 

24 subparagraph (A) is only available for purposes 

25 of such services and shall not be disclosed to 
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1 the employer except in aggregate terms that do 

2 not disclose the identity of specific employees; 

3 (3) where an employer requests or requires 

4 family medical history from the employee to comply 

5 with the certification provisions of section 103 of the 

6 Family and Medical Leave Act of 1993 (29 U.S.C. 

7 2613) or such requirements under State family and 

8 medical leave laws; 

9 (4) where an employer purchases documents 

10 that are commercially and publicly available (includ11 ing newspapers, magazines, periodicals, and books, 

12 but not including medical databases or court 

13 records) that include family medical history; or 

14 (5) where the information involved is to be used 

15 for genetic monitoring of the biological effects of 

16 toxic substances in the workplace, but only if— 

17 (A) the employer provides written notice of 

18 the genetic monitoring to the employee; 

19 (B)(i) the employee provides prior, know20 ing, voluntary, and written authorization; or 

21 (ii) the genetic monitoring is required by 

22 Federal or State law; 

23 (C) the employee is informed of individual 

24 monitoring results; 

25 (D) the monitoring is in compliance with— 
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1 (i) any Federal genetic monitoring 

2 regulations, including any such regulations 

3 that may be promulgated by the Secretary 

4 of Labor pursuant to the Occupational 

5 Safety and Health Act of 1970 (29 U.S.C. 

6 651 et seq.), the Federal Mine Safety and 

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

8 seq.), or the Atomic Energy Act of 1954 

9 (42 U.S.C. 2011 et seq.); or 

10 (ii) State genetic monitoring regula11 tions, in the case of a State that is imple12 menting genetic monitoring regulations 

13 under the authority of the Occupational 

14 Safety and Health Act of 1970 (29 U.S.C. 

15 651 et seq.); and 

16 (E) the employer, excluding any licensed 

17 health care professional or board certified ge18 netic counselor that is involved in the genetic 

19 monitoring program, receives the results of the 

20 monitoring only in aggregate terms that do not 

21 disclose the identity of specific employees; 

22 (c) PRESERVATION OF PROTECTIONS.—In the case 

23 of information to which any of paragraphs (1) through 

24 (5) of subsection (b) applies, such information may not 

25 be used in violation of paragraph (1) or (2) of subsection 
58

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1 (a) or treated or disclosed in a manner that violates sec2 tion 206. 

3 SEC. 203. EMPLOYMENT AGENCY PRACTICES. 

4 (a) USE OF GENETIC INFORMATION.—It shall be an 

5 unlawful employment practice for an employment agen6 cy— 

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

8 otherwise to discriminate against, any individual be9 cause of genetic information with respect to the indi10 vidual (or information about a request for or the re11 ceipt of genetic services by such individual or family 

12 member of such individual); 

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

14 fail or refuse to refer for employment any individual 

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

16 individual of employment opportunities, or otherwise 

17 adversely affect the status of the individual as an 

18 employee, because of genetic information with re19 spect to the individual (or information about a re20 quest for or the receipt of genetic services by such 

21 individual or family member of such individual); or 

22 (3) to cause or attempt to cause an employer to 

23 discriminate against an individual in violation of this 

24 title. 
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1 (b) ACQUISITION OF GENETIC INFORMATION.—It 

2 shall be an unlawful employment practice for an employ3 ment agency to request, require, or purchase genetic infor4 mation with respect to an individual or a family member 

5 of the individual (or information about a request for the 

6 receipt of genetic services by such individual or a family 

7 member of such individual) except— 

8 (1) where an employment agency inadvertently 

9 requests or requires family medical history of the in10 dividual or family member of the individual; 

11 (2) where— 

12 (A) health or genetic services are offered 

13 by the employment agency, including such serv14 ices offered as part of a bona fide wellness pro15 gram; 

16 (B) the individual provides prior, knowing, 

17 voluntary, and written authorization; 

18 (C) only the individual (or family member 

19 if the family member is receiving genetic serv20 ices) and the licensed health care professional 

21 or board certified genetic counselor involved in 

22 providing such services receive individually iden23 tifiable information concerning the results of 

24 such services; and 
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1 (D) any individually identifiable genetic in2 formation provided under subparagraph (C) in 

3 connection with the services provided under 

4 subparagraph (A) is only available for purposes 

5 of such services and shall not be disclosed to 

6 the employment agency except in aggregate 

7 terms that do not disclose the identity of spe8 cific individuals; 

9 (3) where an employment agency requests or re10 quires family medical history from the individual to 

11 comply with the certification provisions of section 

12 103 of the Family and Medical Leave Act of 1993 

13 (29 U.S.C. 2613) or such requirements under State 

14 family and medical leave laws; 

15 (4) where an employment agency purchases 

16 documents that are commercially and publicly avail17 able (including newspapers, magazines, periodicals, 

18 and books, but not including medical databases or 

19 court records) that include family medical history; or 

20 (5) where the information involved is to be used 

21 for genetic monitoring of the biological effects of 

22 toxic substances in the workplace, but only if— 

23 (A) the employment agency provides writ24 ten notice of the genetic monitoring to the indi25 vidual; 
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1 (B)(i) the individual provides prior, know2 ing, voluntary, and written authorization; or 

3 (ii) the genetic monitoring is required by 

4 Federal or State law; 

5 (C) the individual is informed of individual 

6 monitoring results; 

7 (D) the monitoring is in compliance with— 

8 (i) any Federal genetic monitoring 

9 regulations, including any such regulations 

10 that may be promulgated by the Secretary 

11 of Labor pursuant to the Occupational 

12 Safety and Health Act of 1970 (29 U.S.C. 

13 651 et seq.), the Federal Mine Safety and 

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

15 seq.), or the Atomic Energy Act of 1954 

16 (42 U.S.C. 2011 et seq.); or 

17 (ii) State genetic monitoring regula18 tions, in the case of a State that is imple19 menting genetic monitoring regulations 

20 under the authority of the Occupational 

21 Safety and Health Act of 1970 (29 U.S.C. 

22 651 et seq.); and 

23 (E) the employment agency, excluding any 

24 licensed health care professional or board cer25 tified genetic counselor that is involved in the 
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1 genetic monitoring program, receives the results 

2 of the monitoring only in aggregate terms that 

3 do not disclose the identity of specific individ4 uals; 

5 (c) PRESERVATION OF PROTECTIONS.—In the case 

6 of information to which any of paragraphs (1) through 

7 (5) of subsection (b) applies, such information may not 

8 be used in violation of paragraph (1) or (2) of subsection 

9 (a) or treated or disclosed in a manner that violates sec10 tion 206. 

11 SEC. 204. LABOR ORGANIZATION PRACTICES. 

12 (a) USE OF GENETIC INFORMATION.—It shall be an 

13 unlawful employment practice for a labor organization— 

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

15 of the organization, or otherwise to discriminate 

16 against, any member because of genetic information 

17 with respect to the member (or information about a 

18 request for or the receipt of genetic services by such 

19 member or family member of such member); 

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

21 of the organization, or fail or refuse to refer for em22 ployment any member, in any way that would de23 prive or tend to deprive any member of employment 

24 opportunities, or otherwise adversely affect the sta25 tus of the member as an employee, because of ge-
63

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1 netic information with respect to the member (or in2 formation about a request for or the receipt of ge3 netic services by such member or family member of 

4 such member); or 

5 (3) to cause or attempt to cause an employer to 

6 discriminate against a member in violation of this 

7 title. 

8 (b) ACQUISITION OF GENETIC INFORMATION.—It 

9 shall be an unlawful employment practice for a labor orga10 nization to request, require, or purchase genetic informa11 tion with respect to a member or a family member of the 

12 member (or information about a request for the receipt 

13 of genetic services by such member or a family member 

14 of such member) except— 

15 (1) where a labor organization inadvertently re16 quests or requires family medical history of the 

17 member or family member of the member; 

18 (2) where— 

19 (A) health or genetic services are offered 

20 by the labor organization, including such serv21 ices offered as part of a bona fide wellness pro22 gram; 

23 (B) the member provides prior, knowing, 

24 voluntary, and written authorization; 
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1 (C) only the member (or family member if 

2 the family member is receiving genetic services) 

3 and the licensed health care professional or 

4 board certified genetic counselor involved in 

5 providing such services receive individually iden6 tifiable information concerning the results of 

7 such services; and 

8 (D) any individually identifiable genetic in9 formation provided under subparagraph (C) in 

10 connection with the services provided under 

11 subparagraph (A) is only available for purposes 

12 of such services and shall not be disclosed to 

13 the labor organization except in aggregate 

14 terms that do not disclose the identity of spe15 cific members; 

16 (3) where a labor organization requests or re17 quires family medical history from the members to 

18 comply with the certification provisions of section 

19 103 of the Family and Medical Leave Act of 1993 

20 (29 U.S.C. 2613) or such requirements under State 

21 family and medical leave laws; 

22 (4) where a labor organization purchases docu23 ments that are commercially and publicly available 

24 (including newspapers, magazines, periodicals, and 
65

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1 books, but not including medical databases or court 

2 records) that include family medical history; or 

3 (5) where the information involved is to be used 

4 for genetic monitoring of the biological effects of 

5 toxic substances in the workplace, but only if— 

6 (A) the labor organization provides written 

7 notice of the genetic monitoring to the member; 

8 (B)(i) the member provides prior, knowing, 

9 voluntary, and written authorization; or 

10 (ii) the genetic monitoring is required by 

11 Federal or State law; 

12 (C) the member is informed of individual 

13 monitoring results; 

14 (D) the monitoring is in compliance with— 

15 (i) any Federal genetic monitoring 

16 regulations, including any such regulations 

17 that may be promulgated by the Secretary 

18 of Labor pursuant to the Occupational 

19 Safety and Health Act of 1970 (29 U.S.C. 

20 651 et seq.), the Federal Mine Safety and 

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

22 seq.), or the Atomic Energy Act of 1954 

23 (42 U.S.C. 2011 et seq.); or 

24 (ii) State genetic monitoring regula25 tions, in the case of a State that is imple-
66

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1 menting genetic monitoring regulations 

2 under the authority of the Occupational 

3 Safety and Health Act of 1970 (29 U.S.C. 

4 651 et seq.); and 

5 (E) the labor organization, excluding any 

6 licensed health care professional or board cer7 tified genetic counselor that is involved in the 

8 genetic monitoring program, receives the results 

9 of the monitoring only in aggregate terms that 

10 do not disclose the identity of specific members; 

11 (c) PRESERVATION OF PROTECTIONS.—In the case 

12 of information to which any of paragraphs (1) through 

13 (5) of subsection (b) applies, such information may not 

14 be used in violation of paragraph (1) or (2) of subsection 

15 (a) or treated or disclosed in a manner that violates sec16 tion 206. 

17 SEC. 205. TRAINING PROGRAMS. 

18 (a) USE OF GENETIC INFORMATION.—It shall be an 

19 unlawful employment practice for any employer, labor or20 ganization, or joint labor-management committee control21 ling apprenticeship or other training or retraining, includ22 ing on-the-job training programs— 

23 (1) to discriminate against any individual be24 cause of genetic information with respect to the indi25 vidual (or information about a request for or the re-
67

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1 ceipt of genetic services by such individual or a fam2 ily member of such individual) in admission to, or 

3 employment in, any program established to provide 

4 apprenticeship or other training or retraining; 

5 (2) to limit, segregate, or classify the applicants 

6 for or participants in such apprenticeship or other 

7 training or retraining, or fail or refuse to refer for 

8 employment any individual, in any way that would 

9 deprive or tend to deprive any individual of employ10 ment opportunities, or otherwise adversely affect the 

11 status of the individual as an employee, because of 

12 genetic information with respect to the individual (or 

13 information about a request for or receipt of genetic 

14 services by such individual or family member of such 

15 individual); or 

16 (3) to cause or attempt to cause an employer to 

17 discriminate against an applicant for or a partici18 pant in such apprenticeship or other training or re19 training in violation of this title. 

20 (b) ACQUISITION OF GENETIC INFORMATION.—It 

21 shall be an unlawful employment practice for an employer, 

22 labor organization, or joint labor-management committee 

23 described in subsection (a) to request, require, or purchase 

24 genetic information with respect to an individual or a fam25 ily member of the individual (or information about a re-
68

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1 quest for the receipt of genetic services by such individual 

2 or a family member of such individual) except— 

3 (1) where the employer, labor organization, or 

4 joint labor-management committee inadvertently re5 quests or requires family medical history of the indi6 vidual or family member of the individual; 

7 (2) where— 

8 (A) health or genetic services are offered 

9 by the employer, labor organization, or joint 

10 labor-management committee, including such 

11 services offered as part of a bona fide wellness 

12 program; 

13 (B) the individual provides prior, knowing, 

14 voluntary, and written authorization; 

15 (C) only the individual (or family member 

16 if the family member is receiving genetic serv17 ices) and the licensed health care professional 

18 or board certified genetic counselor involved in 

19 providing such services receive individually iden20 tifiable information concerning the results of 

21 such services; 

22 (D) any individually identifiable genetic in23 formation provided under subparagraph (C) in 

24 connection with the services provided under 

25 subparagraph (A) is only available for purposes 
69

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1 of such services and shall not be disclosed to 

2 the employer, labor organization, or joint labor3 management committee except in aggregate 

4 terms that do not disclose the identity of spe5 cific individuals; 

6 (3) where the employer, labor organization, or 

7 joint labor-management committee requests or re8 quires family medical history from the individual to 

9 comply with the certification provisions of section 

10 103 of the Family and Medical Leave Act of 1993 

11 (29 U.S.C. 2613) or such requirements under State 

12 family and medical leave laws; 

13 (4) where the employer, labor organization, or 

14 joint labor-management committee purchases docu15 ments that are commercially and publicly available 

16 (including newspapers, magazines, periodicals, and 

17 books, but not including medical databases or court 

18 records) that include family medical history; or 

19 (5) where the information involved is to be used 

20 for genetic monitoring of the biological effects of 

21 toxic substances in the workplace, but only if— 

22 (A) the employer, labor organization, or 

23 joint labor-management committee provides 

24 written notice of the genetic monitoring to the 

25 individual; 
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1 (B)(i) the individual provides prior, know2 ing, voluntary, and written authorization; or 

3 (ii) the genetic monitoring is required by 

4 Federal or State law; 

5 (C) the individual is informed of individual 

6 monitoring results; 

7 (D) the monitoring is in compliance with— 

8 (i) any Federal genetic monitoring 

9 regulations, including any such regulations 

10 that may be promulgated by the Secretary 

11 of Labor pursuant to the Occupational 

12 Safety and Health Act of 1970 (29 U.S.C. 

13 651 et seq.), the Federal Mine Safety and 

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

15 seq.), or the Atomic Energy Act of 1954 

16 (42 U.S.C. 2011 et seq.); or 

17 (ii) State genetic monitoring regula18 tions, in the case of a State that is imple19 menting genetic monitoring regulations 

20 under the authority of the Occupational 

21 Safety and Health Act of 1970 (29 U.S.C. 

22 651 et seq.); and 

23 (E) the employer, labor organization, or 

24 joint labor-management committee, excluding 

25 any licensed health care professional or board 
71

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1 certified genetic counselor that is involved in 

2 the genetic monitoring program, receives the re3 sults of the monitoring only in aggregate terms 

4 that do not disclose the identity of specific indi5 viduals; 

6 (c) PRESERVATION OF PROTECTIONS.—In the case 

7 of information to which any of paragraphs (1) through 

8 (5) of subsection (b) applies, such information may not 

9 be used in violation of paragraph (1) or (2) of subsection 

10 (a) or treated or disclosed in a manner that violates sec11 tion 206. 

12 SEC. 206. CONFIDENTIALITY OF GENETIC INFORMATION. 

13 (a) TREATMENT OF INFORMATION AS PART OF CON14 FIDENTIAL MEDICAL RECORD.—If an employer, employ15 ment agency, labor organization, or joint labor-manage16 ment committee possesses genetic information about an 

17 employee or member (or information about a request for 

18 or receipt of genetic services by such employee or member 

19 or family member of such employee or member), such in20 formation shall be maintained on separate forms and in 

21 separate medical files and be treated as a confidential 

22 medical record of the employee or member. 

23 (b) LIMITATION ON DISCLOSURE.—An employer, em24 ployment agency, labor organization, or joint labor-man25 agement committee shall not disclose genetic information 
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1 concerning an employee or member (or information about 

2 a request for or receipt of genetic services by such em3 ployee or member or family member of such employee or 

4 member) except— 

5 (1) to the employee (or family member if the 

6 family member is receiving the genetic services) or 

7 member of a labor organization at the request of the 

8 employee or member of such organization; 

9 (2) to an occupational or other health re10 searcher if the research is conducted in compliance 

11 with the regulations and protections provided for 

12 under part 46 of title 45, Code of Federal Regula13 tions; 

14 (3) in response to an order of a court, except 

15 that— 

16 (A) the employer, employment agency, 

17 labor organization, or joint labor-management 

18 committee may disclose only the genetic infor19 mation expressly authorized by such order; and 

20 (B) if the court order was secured without 

21 the knowledge of the employee or member to 

22 whom the information refers, the employer, em23 ployment agency, labor organization, or joint 

24 labor-management committee shall provide the 
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1 employee or member with adequate notice to 

2 challenge the court order; 

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

5 is relevant to the investigation; or 

6 (5) to the extent that such disclosure is made 

7 in connection with the employee’s compliance with 

8 the certification provisions of section 103 of the 

9 Family and Medical Leave Act of 1993 (29 U.S.C. 

10 2613) or such requirements under State family and 

11 medical leave laws. 

12 SEC. 207. REMEDIES AND ENFORCEMENT. 

13 (a) EMPLOYEES COVERED BY TITLE VII OF THE

14 CIVIL RIGHTS ACT OF 1964.— 

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

16 procedures provided in sections 705, 706, 707, 709, 

17 710, and 711 of the Civil Rights Act of 1964 (42 

18 U.S.C. 2000e–4 et seq.) to the Commission, the At19 torney General, or any person, alleging a violation of 

20 title VII of that Act (42 U.S.C. 2000e et seq.) shall 

21 be the powers, remedies, and procedures this title 

22 provides to the Commission, the Attorney General, 

23 or any person, respectively, alleging an unlawful em24 ployment practice in violation of this title against an 
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1 employee described in section 201(2)(A)(i), except as 

2 provided in paragraphs (2) and (3). 

3 (2) COSTS AND FEES.—The powers, remedies, 

4 and procedures provided in subsections (b) and (c) 

5 of section 722 of the Revised Statutes (42 U.S.C. 

6 1988), shall be powers, remedies, and procedures 

7 this title provides to the Commission, the Attorney 

8 General, or any person, alleging such a practice. 

9 (3) DAMAGES.—The powers, remedies, and pro10 cedures provided in section 1977A of the Revised 

11 Statutes (42 U.S.C. 1981a), including the limita12 tions contained in subsection (b)(3) of such section 

13 1977A, shall be powers, remedies, and procedures 

14 this title provides to the Commission, the Attorney 

15 General, or any person, alleging such a practice (not 

16 an employment practice specifically excluded from 

17 coverage under section 1977A(a)(1) of the Revised 

18 Statutes). 

19 (b) EMPLOYEES COVERED BY GOVERNMENT EM20 PLOYEE RIGHTS ACT OF 1991.— 

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

22 procedures provided in sections 302 and 304 of the 

23 Government Employee Rights Act of 1991 (42 

24 U.S.C. 2000e–16b, 2000e–16c) to the Commission, 

25 or any person, alleging a violation of section 
75

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1 302(a)(1) of that Act (42 U.S.C. 2000e–16b(a)(1)) 

2 shall be the powers, remedies, and procedures this 

3 title provides to the Commission, or any person, re4 spectively, alleging an unlawful employment practice 

5 in violation of this title against an employee de6 scribed in section 201(2)(A)(ii), except as provided 

7 in paragraphs (2) and (3). 

8 (2) COSTS AND FEES.—The powers, remedies, 

9 and procedures provided in subsections (b) and (c) 

10 of section 722 of the Revised Statutes (42 U.S.C. 

11 1988), shall be powers, remedies, and procedures 

12 this title provides to the Commission, or any person, 

13 alleging such a practice. 

14 (3) DAMAGES.—The powers, remedies, and pro15 cedures provided in section 1977A of the Revised 

16 Statutes (42 U.S.C. 1981a), including the limita17 tions contained in subsection (b)(3) of such section 

18 1977A, shall be powers, remedies, and procedures 

19 this title provides to the Commission, or any person, 

20 alleging such a practice (not an employment practice 

21 specifically excluded from coverage under section 

22 1977A(a)(1) of the Revised Statutes). 

23 (c) EMPLOYEES COVERED BY CONGRESSIONAL AC24 COUNTABILITY ACT OF 1995.— 
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1 (1) IN GENERAL.—The powers, remedies, and 

2 procedures provided in the Congressional Account3 ability Act of 1995 (2 U.S.C. 1301 et seq.) to the 

4 Board (as defined in section 101 of that Act (2 

5 U.S.C. 1301)), or any person, alleging a violation of 

6 section 201(a)(1) of that Act (42 U.S.C. 1311(a)(1)) 

7 shall be the powers, remedies, and procedures this 

8 title provides to that Board, or any person, alleging 

9 an unlawful employment practice in violation of this 

10 title against an employee described in section 

11 201(2)(A)(iii), except as provided in paragraphs (2) 

12 and (3). 

13 (2) COSTS AND FEES.—The powers, remedies, 

14 and procedures provided in subsections (b) and (c) 

15 of section 722 of the Revised Statutes (42 U.S.C. 

16 1988), shall be powers, remedies, and procedures 

17 this title provides to that Board, or any person, al18 leging such a practice. 

19 (3) DAMAGES.—The powers, remedies, and pro20 cedures provided in section 1977A of the Revised 

21 Statutes (42 U.S.C. 1981a), including the limita22 tions contained in subsection (b)(3) of such section 

23 1977A, shall be powers, remedies, and procedures 

24 this title provides to that Board, or any person, al25 leging such a practice (not an employment practice 
77

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1 specifically excluded from coverage under section 

2 1977A(a)(1) of the Revised Statutes). 

3 (4) OTHER APPLICABLE PROVISIONS.—With re4 spect to a claim alleging a practice described in 

5 paragraph (1), title III of the Congressional Ac6 countability Act of 1995 (2 U.S.C. 1381 et seq.) 

7 shall apply in the same manner as such title applies 

8 with respect to a claim alleging a violation of section 

9 201(a)(1) of such Act (2 U.S.C. 1311(a)(1)). 

10 (d) EMPLOYEES COVERED BY CHAPTER 5 OF TITLE

11 3, UNITED STATES CODE.— 

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

13 procedures provided in chapter 5 of title 3, United 

14 States Code, to the President, the Commission, the 

15 Merit Systems Protection Board, or any person, al16 leging a violation of section 411(a)(1) of that title, 

17 shall be the powers, remedies, and procedures this 

18 title provides to the President, the Commission, such 

19 Board, or any person, respectively, alleging an un20 lawful employment practice in violation of this title 

21 against an employee described in section 

22 201(2)(A)(iv), except as provided in paragraphs (2) 

23 and (3). 

24 (2) COSTS AND FEES.—The powers, remedies, 

25 and procedures provided in subsections (b) and (c) 
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1 of section 722 of the Revised Statutes (42 U.S.C. 

2 1988), shall be powers, remedies, and procedures 

3 this title provides to the President, the Commission, 

4 such Board, or any person, alleging such a practice. 

5 (3) DAMAGES.—The powers, remedies, and pro6 cedures provided in section 1977A of the Revised 

7 Statutes (42 U.S.C. 1981a), including the limita8 tions contained in subsection (b)(3) of such section 

9 1977A, shall be powers, remedies, and procedures 

10 this title provides to the President, the Commission, 

11 such Board, or any person, alleging such a practice 

12 (not an employment practice specifically excluded 

13 from coverage under section 1977A(a)(1) of the Re14 vised Statutes). 

15 (e) EMPLOYEES COVERED BY SECTION 717 OF THE

16 CIVIL RIGHTS ACT OF 1964.— 

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

18 procedures provided in section 717 of the Civil 

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

20 Commission, the Attorney General, the Librarian of 

21 Congress, or any person, alleging a violation of that 

22 section shall be the powers, remedies, and proce23 dures this title provides to the Commission, the At24 torney General, the Librarian of Congress, or any 

25 person, respectively, alleging an unlawful employ-
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1 ment practice in violation of this title against an em2 ployee or applicant described in section 

3 201(2)(A)(v), except as provided in paragraphs (2) 

4 and (3). 

5 (2) COSTS AND FEES.—The powers, remedies, 

6 and procedures provided in subsections (b) and (c) 

7 of section 722 of the Revised Statutes (42 U.S.C. 

8 1988), shall be powers, remedies, and procedures 

9 this title provides to the Commission, the Attorney 

10 General, the Librarian of Congress, or any person, 

11 alleging such a practice. 

12 (3) DAMAGES.—The powers, remedies, and pro13 cedures provided in section 1977A of the Revised 

14 Statutes (42 U.S.C. 1981a), including the limita15 tions contained in subsection (b)(3) of such section 

16 1977A, shall be powers, remedies, and procedures 

17 this title provides to the Commission, the Attorney 

18 General, the Librarian of Congress, or any person, 

19 alleging such a practice (not an employment practice 

20 specifically excluded from coverage under section 

21 1977A(a)(1) of the Revised Statutes). 

22 (f) DEFINITION.—In this section, the term ‘‘Commis23 sion’’ means the Equal Employment Opportunity Commis24 sion. 
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1 SEC. 208. DISPARATE IMPACT. 

2 (a) GENERAL RULE.—Notwithstanding any other 

3 provision of this Act, ‘‘disparate impact’’, as that term is 

4 used in section 703(k) of the Civil Rights Act of 1964 

5 (42 U.S.C. 2000e–d(k)), on the basis of genetic informa6 tion does not establish a cause of action under this Act. 

7 (b) COMMISSION.—On the date that is 6 years after 

8 the date of enactment of this Act, there shall be estab9 lished a commission, to be known as the Genetic Non10 discrimination Study Commission (referred to in this sec11 tion as the ‘‘Commission’’) to review the developing 

12 science of genetics and to make recommendations to Con13 gress regarding whether to provide a disparate impact 

14 cause of action under this Act. 

15 (c) MEMBERSHIP.— 

16 (1) IN GENERAL.—The Commission shall be 

17 composed of 8 members, of which— 

18 (A) 1 member shall be appointed by the 

19 Majority Leader of the Senate; 

20 (B) 1 member shall be appointed by the 

21 Minority Leader of the Senate; 

22 (C) 1 member shall be appointed by the 

23 Chairman of the Committee on Health, Edu24 cation, Labor, and Pensions of the Senate; 

25 (D) 1 member shall be appointed by the 

26 ranking minority member of the Committee on 
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1 Health, Education, Labor, and Pensions of the 

2 Senate; 

3 (E) 1 member shall be appointed by the 

4 Speaker of the House of Representatives; 

5 (F) 1 member shall be appointed by the 

6 Minority Leader of the House of Representa7 tives; 

8 (G) 1 member shall be appointed by the 

9 Chairman of the Committee on Education and 

10 the Workforce of the House of Representatives; 

11 and 

12 (H) 1 member shall be appointed by the 

13 ranking minority member of the Committee on 

14 Education and the Workforce of the House of 

15 Representatives. 

16 (2) COMPENSATION AND EXPENSES.—The 

17 members of the Commission shall not receive com18 pensation for the performance of services for the 

19 Commission, but shall be allowed travel expenses, in20 cluding per diem in lieu of subsistence, at rates au21 thorized for employees of agencies under subchapter 

22 I of chapter 57 of title 5, United States Code, while 

23 away from their homes or regular places of business 

24 in the performance of services for the Commission. 

25 (d) ADMINISTRATIVE PROVISIONS.— 
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1 (1) LOCATION.—The Commission shall be lo2 cated in a facility maintained by the Equal Employ3 ment Opportunity Commission. 

4 (2) DETAIL OF GOVERNMENT EMPLOYEES.—

5 Any Federal Government employee may be detailed 

6 to the Commission without reimbursement, and such 

7 detail shall be without interruption or loss of civil 

8 service status or privilege. 

9 (3) INFORMATION FROM FEDERAL AGENCIES.—

10 The Commission may secure directly from any Fed11 eral department or agency such information as the 

12 Commission considers necessary to carry out the 

13 provisions of this section. Upon request of the Com14 mission, the head of such department or agency 

15 shall furnish such information to the Commission. 

16 (4) HEARINGS.—The Commission may hold 

17 such hearings, sit and act at such times and places, 

18 take such testimony, and receive such evidence as 

19 the Commission considers advisable to carry out the 

20 objectives of this section, except that, to the extent 

21 possible, the Commission shall use existing data and 

22 research. 

23 (5) POSTAL SERVICES.—The Commission may 

24 use the United States mails in the same manner and 
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1 under the same conditions as other departments and 

2 agencies of the Federal Government. 

3 (e) REPORT.—Not later than 1 year after all of the 

4 members are appointed to the Commission under sub5 section (c)(1), the Commission shall submit to Congress 

6 a report that summarizes the findings of the Commission 

7 and makes such recommendations for legislation as are 

8 consistent with this Act. 

9 (f) AUTHORIZATION OF APPROPRIATIONS.—There 

10 are authorized to be appropriated to the Equal Employ11 ment Opportunity Commission such sums as may be nec12 essary to carry out this section. 

13 SEC. 209. CONSTRUCTION. 

14 Nothing in this title shall be construed to— 

15 (1) limit the rights or protections of an indi16 vidual under the Americans with Disabilities Act of 

17 1990 (42 U.S.C. 12101 et seq.), including coverage 

18 afforded to individuals under section 102 of such 

19 Act (42 U.S.C. 12112), or under the Rehabilitation 

20 Act of 1973 (29 U.S.C. 701 et seq.); 

21 (2)(A) limit the rights or protections of an indi22 vidual to bring an action under this title against an 

23 employer, employment agency, labor organization, or 

24 joint labor-management committee for a violation of 

25 this title; or 
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1 (B) establish a violation under this title for an 

2 employer, employment agency, labor organization, or 

3 joint labor-management committee of a provision of 

4 the amendments made by title I; 

5 (3) limit the rights or protections of an indi6 vidual under any other Federal or State statute that 

7 provides equal or greater protection to an individual 

8 than the rights or protections provided for under 

9 this title; 

10 (4) apply to the Armed Forces Repository of 

11 Specimen Samples for the Identification of Remains; 

12 (5) limit or expand the protections, rights, or 

13 obligations of employees or employers under applica14 ble workers’ compensation laws; 

15 (6) limit the authority of a Federal department 

16 or agency to conduct or sponsor occupational or 

17 other health research that is conducted in compli18 ance with the regulations contained in part 46 of 

19 title 45, Code of Federal Regulations (or any cor20 responding or similar regulation or rule); and 

21 (7) limit the statutory or regulatory authority 

22 of the Occupational Safety and Health Administra23 tion or the Mine Safety and Health Administration 

24 to promulgate or enforce workplace safety and 

25 health laws and regulations. 
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1 SEC. 210. MEDICAL INFORMATION THAT IS NOT GENETIC 

2 INFORMATION. 

3 An employer, employment agency, labor organization, 

4 or joint labor-management committee shall not be consid5 ered to be in violation of this title based on the use, acqui6 sition, or disclosure of medical information that is not ge7 netic information about a manifested disease, disorder, or 

8 pathological condition of an employee or member, includ9 ing a manifested disease, disorder, or pathological condi10 tion that has or may have a genetic basis. 

11 SEC. 211. REGULATIONS. 

12 Not later than 1 year after the date of enactment 

13 of this title, the Commission shall issue final regulations 

14 in an accessible format to carry out this title. 

15 SEC. 212. AUTHORIZATION OF APPROPRIATIONS. 

16 There are authorized to be appropriated such sums 

17 as may be necessary to carry out this title (except for sec18 tion 208). 

19 SEC. 213. EFFECTIVE DATE. 

20 This title takes effect on the date that is 18 months 

21 after the date of enactment of this Act. 

22 TITLE III—MISCELLANEOUS 

23 PROVISION 

24 SEC. 301. SEVERABILITY. 

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

26 this Act, or the application of such provision or amend-
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1 ment to any person or circumstance is held to be unconsti2 tutional, the remainder of this Act, the amendments made 

3 by this Act, and the application of such provisions to any 

4 person or circumstance shall not be affected thereby.

5 SECTION 1. SHORT TITLE; TABLE OF CONTENTS. 

6 (a) SHORT TITLE.—This Act may be cited as the ‘‘Ge7 netic Information Nondiscrimination Act of 2005’’. 

8 (b) TABLE OF CONTENTS.—The table of contents of this 

9 Act is as follows:

Sec. 1. Short title; table of contents. 

Sec. 2. Findings. 

TITLE I—GENETIC NONDISCRIMINATION IN HEALTH INSURANCE 

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

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

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

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

medigap. 

Sec. 105. Privacy and confidentiality. 

Sec. 106. Assuring coordination. 

Sec. 107. Regulations; effective date. 

TITLE II—PROHIBITING EMPLOYMENT DISCRIMINATION ON THE 

BASIS OF 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. Confidentiality of genetic information. 

Sec. 207. Remedies and enforcement. 

Sec. 208. Disparate impact. 

Sec. 209. Construction. 

Sec. 210. Medical information that is not genetic information. 

Sec. 211. Regulations. 

Sec. 212. Authorization of appropriations. 

Sec. 213. Effective date. 

TITLE III—MISCELLANEOUS PROVISION 

Sec. 301. Severability.
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1 SEC. 2. FINDINGS. 

2 Congress makes the following findings: 

3 (1) Deciphering the sequence of the human ge4 nome and other advances in genetics open major new 

5 opportunities for medical progress. New knowledge 

6 about the genetic basis of illness will allow for earlier 

7 detection of illnesses, often before symptoms have 

8 begun. Genetic testing can allow individuals to take 

9 steps to reduce the likelihood that they will contract 

10 a particular disorder. New knowledge about genetics 

11 may allow for the development of better therapies that 

12 are more effective against disease or have fewer side 

13 effects than current treatments. These advances give 

14 rise to the potential misuse of genetic information to 

15 discriminate in health insurance and employment. 

16 (2) The early science of genetics became the basis 

17 of State laws that provided for the sterilization of 

18 persons having presumed genetic ‘‘defects’’ such as 

19 mental retardation, mental disease, epilepsy, blind20 ness, and hearing loss, among other conditions. The 

21 first sterilization law was enacted in the State of In22 diana in 1907. By 1981, a majority of States adopted 

23 sterilization laws to ‘‘correct’’ apparent genetic traits 

24 or tendencies. Many of these State laws have since 

25 been repealed, and many have been modified to in26 clude essential constitutional requirements of due 
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1 process and equal protection. However, the current ex2 plosion in the science of genetics, and the history of 

3 sterilization laws by the States based on early genetic 

4 science, compels Congressional action in this area. 

5 (3) Although genes are facially neutral markers, 

6 many genetic conditions and disorders are associated 

7 with particular racial and ethnic groups and gender. 

8 Because some genetic traits are most prevalent in 

9 particular groups, members of a particular group 

10 may be stigmatized or discriminated against as a re11 sult of that genetic information. This form of dis12 crimination was evident in the 1970s, which saw the 

13 advent of programs to screen and identify carriers of 

14 sickle cell anemia, a disease which afflicts African15 Americans. Once again, State legislatures began to 

16 enact discriminatory laws in the area, and in the 

17 early 1970s began mandating genetic screening of all 

18 African Americans for sickle cell anemia, leading to 

19 discrimination and unnecessary fear. To alleviate 

20 some of this stigma, Congress in 1972 passed the Na21 tional Sickle Cell Anemia Control Act, which with22 holds Federal funding from States unless sickle cell 

23 testing is voluntary. 

24 (4) Congress has been informed of examples of 

25 genetic discrimination in the workplace. These in-
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1 clude the use of pre-employment genetic screening at 

2 Lawrence Berkeley Laboratory, which led to a court 

3 decision in favor of the employees in that case Nor4 man-Bloodsaw v. Lawrence Berkeley Laboratory (135 

5 F.3d 1260, 1269 (9th Cir. 1998)). Congress clearly 

6 has a compelling public interest in relieving the fear 

7 of discrimination and in prohibiting its actual prac8 tice in employment and health insurance. 

9 (5) Federal law addressing genetic discrimina10 tion in health insurance and employment is incom11 plete in both the scope and depth of its protections. 

12 Moreover, while many States have enacted some type 

13 of genetic non-discrimination law, these laws vary 

14 widely with respect to their approach, application, 

15 and level of protection. Congress has collected substan16 tial evidence that the American public and the med17 ical community find the existing patchwork of State 

18 and Federal laws to be confusing and inadequate to 

19 protect them from discrimination. Therefore Federal 

20 legislation establishing a national and uniform basic 

21 standard is necessary to fully protect the public from 

22 discrimination and allay their concerns about the po23 tential for discrimination, thereby allowing individ24 uals to take advantage of genetic testing, technologies, 

25 research, and new therapies. 
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1 TITLE I—GENETIC NON2 DISCRIMINATION IN HEALTH 

3 INSURANCE 

4 SEC. 101. AMENDMENTS TO EMPLOYEE RETIREMENT IN5 COME SECURITY ACT OF 1974. 

6 (a) PROHIBITION OF HEALTH DISCRIMINATION ON

7 THE BASIS OF GENETIC INFORMATION OR GENETIC SERV8 ICES.— 

9 (1) NO ENROLLMENT RESTRICTION FOR GENETIC

10 SERVICES.—Section 702(a)(1)(F) of the Employee Re11 tirement Income Security Act of 1974 (29 U.S.C. 

12 1182(a)(1)(F)) is amended by inserting before the pe13 riod the following: ‘‘(including information about a 

14 request for or receipt of genetic services by an indi15 vidual or family member of such individual)’’. 

16 (2) NO DISCRIMINATION IN GROUP PREMIUMS

17 BASED ON GENETIC INFORMATION.—Section 702(b) of 

18 the Employee Retirement Income Security Act of 

19 1974 (29 U.S.C. 1182(b)) is amended— 

20 (A) in paragraph (2)(A), by inserting before 

21 the semicolon the following: ‘‘except as provided 

22 in paragraph (3)’’; and 

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

24 ‘‘(3) NO DISCRIMINATION IN GROUP PREMIUMS

25 BASED ON GENETIC INFORMATION.—For purposes of 
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1 this section, a group health plan, or a health insur2 ance issuer offering group health insurance coverage 

3 in connection with a group health plan, shall not ad4 just premium or contribution amounts for a group on 

5 the basis of genetic information concerning an indi6 vidual in the group or a family member of the indi7 vidual (including information about a request for or 

8 receipt of genetic services by an individual or family 

9 member of such individual).’’. 

10 (b) LIMITATIONS ON GENETIC TESTING.—Section 702 

11 of the Employee Retirement Income Security Act of 1974 

12 (29 U.S.C. 1182) is amended by adding at the end the fol13 lowing: 

14 ‘‘(c) GENETIC TESTING.— 

15 ‘‘(1) LIMITATION ON REQUESTING OR REQUIRING

16 GENETIC TESTING.—A group health plan, or a health 

17 insurance issuer offering health insurance coverage in 

18 connection with a group health plan, shall not request 

19 or require an individual or a family member of such 

20 individual to undergo a genetic test. 

21 ‘‘(2) RULE OF CONSTRUCTION.—Nothing in this 

22 part shall be construed to— 

23 ‘‘(A) limit the authority of a health care 

24 professional who is providing health care services 

25 with respect to an individual to request that 
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1 such individual or a family member of such in2 dividual undergo a genetic test; 

3 ‘‘(B) limit the authority of a health care 

4 professional who is employed by or affiliated 

5 with a group health plan or a health insurance 

6 issuer and who is providing health care services 

7 to an individual as part of a bona fide wellness 

8 program to notify such individual of the avail9 ability of a genetic test or to provide information 

10 to such individual regarding such genetic test; or 

11 ‘‘(C) authorize or permit a health care pro12 fessional to require that an individual undergo a 

13 genetic test. 

14 ‘‘(d) APPLICATION TO ALL PLANS.—The provisions of 

15 subsections (a)(1)(F), (b)(3), and (c) shall apply to group 

16 health plans and health insurance issuers without regard 

17 to section 732(a).’’. 

18 (c) REMEDIES AND ENFORCEMENT.—Section 502 of 

19 the Employee Retirement Income Security Act of 1974 (29 

20 U.S.C. 1132) is amended by adding at the end the following: 

21 ‘‘(n) ENFORCEMENT OF GENETIC NONDISCRIMINATION

22 REQUIREMENTS.— 

23 ‘‘(1) INJUNCTIVE RELIEF FOR IRREPARABLE

24 HARM.—With respect to any violation of subsection 

25 (a)(1)(F), (b)(3), or (c) of section 702, a participant 
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1 or beneficiary may seek relief under subsection 

2 502(a)(1)(B) prior to the exhaustion of available ad3 ministrative remedies under section 503 if it is dem4 onstrated to the court, by a preponderance of the evi5 dence, that the exhaustion of such remedies would 

6 cause irreparable harm to the health of the partici7 pant or beneficiary. Any determinations that already 

8 have been made under section 503 in such case, or 

9 that are made in such case while an action under this 

10 paragraph is pending, shall be given due consider11 ation by the court in any action under this subsection 

12 in such case. 

13 ‘‘(2) EQUITABLE RELIEF FOR GENETIC NON14 DISCRIMINATION.— 

15 ‘‘(A) REINSTATEMENT OF BENEFITS WHERE

16 EQUITABLE RELIEF HAS BEEN AWARDED.—The 

17 recovery of benefits by a participant or bene18 ficiary under a civil action under this section 

19 may include an administrative penalty under 

20 subparagraph (B) and the retroactive reinstate21 ment of coverage under the plan involved to the 

22 date on which the participant or beneficiary was 

23 denied eligibility for coverage if— 

24 ‘‘(i) the civil action was commenced 

25 under subsection (a)(1)(B); and 
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1 ‘‘(ii) the denial of coverage on which 

2 such civil action was based constitutes a 

3 violation of subsection (a)(1)(F), (b)(3), or 

4 (c) of section 702. 

5 ‘‘(B) ADMINISTRATIVE PENALTY.— 

6 ‘‘(i) IN GENERAL.—An administrator 

7 who fails to comply with the requirements 

8 of subsection (a)(1)(F), (b)(3), or (c) of sec9 tion 702 with respect to a participant or 

10 beneficiary may, in an action commenced 

11 under subsection (a)(1)(B), be personally 

12 liable in the discretion of the court, for a 

13 penalty in the amount not more than $100 

14 for each day in the noncompliance period. 

15 ‘‘(ii) NONCOMPLIANCE PERIOD.—For 

16 purposes of clause (i), the term ‘noncompli17 ance period’ means the period— 

18 ‘‘(I) beginning on the date that a 

19 failure described in clause (i) occurs; 

20 and 

21 ‘‘(II) ending on the date that such 

22 failure is corrected. 

23 ‘‘(iii) PAYMENT TO PARTICIPANT OR

24 BENEFICIARY.—A penalty collected under 
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1 this subparagraph shall be paid to the par2 ticipant or beneficiary involved. 

3 ‘‘(3) SECRETARIAL ENFORCEMENT AUTHORITY.— 

4 ‘‘(A) GENERAL RULE.—The Secretary has 

5 the authority to impose a penalty on any failure 

6 of a group health plan to meet the requirements 

7 of subsection (a)(1)(F), (b)(3), or (c) of section 

8 702. 

9 ‘‘(B) AMOUNT.— 

10 ‘‘(i) IN GENERAL.—The amount of the 

11 penalty imposed by subparagraph (A) shall 

12 be $100 for each day in the noncompliance 

13 period with respect to each individual to 

14 whom such failure relates. 

15 ‘‘(ii) NONCOMPLIANCE PERIOD.—For 

16 purposes of this paragraph, the term ‘non17 compliance period’ means, with respect to 

18 any failure, the period— 

19 ‘‘(I) beginning on the date such 

20 failure first occurs; and 

21 ‘‘(II) ending on the date such fail22 ure is corrected. 

23 ‘‘(C) MINIMUM PENALTIES WHERE FAILURE

24 DISCOVERED.—Notwithstanding clauses (i) and 

25 (ii) of subparagraph (D): 
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1 ‘‘(i) IN GENERAL.—In the case of 1 or 

2 more failures with respect to an indi3 vidual— 

4 ‘‘(I) which are not corrected before 

5 the date on which the plan receives a 

6 notice from the Secretary of such viola7 tion; and 

8 ‘‘(II) which occurred or continued 

9 during the period involved; 

10 the amount of penalty imposed by subpara11 graph (A) by reason of such failures with 

12 respect to such individual shall not be less 

13 than $2,500. 

14 ‘‘(ii) HIGHER MINIMUM PENALTY

15 WHERE VIOLATIONS ARE MORE THAN DE

16 MINIMIS.—To the extent violations for 

17 which any person is liable under this para18 graph for any year are more than de mini19 mis, clause (i) shall be applied by sub20 stituting ‘$15,000’ for ‘$2,500’ with respect 

21 to such person. 

22 ‘‘(D) LIMITATIONS.— 

23 ‘‘(i) PENALTY NOT TO APPLY WHERE

24 FAILURE NOT DISCOVERED EXERCISING

25 REASONABLE DILIGENCE.—No penalty shall 
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1 be imposed by subparagraph (A) on any 

2 failure during any period for which it is es3 tablished to the satisfaction of the Secretary 

4 that the person otherwise liable for such 

5 penalty did not know, and exercising rea6 sonable diligence would not have known, 

7 that such failure existed. 

8 ‘‘(ii) PENALTY NOT TO APPLY TO FAIL9 URES CORRECTED WITHIN CERTAIN PERI10 ODS.—No penalty shall be imposed by sub11 paragraph (A) on any failure if— 

12 ‘‘(I) such failure was due to rea13 sonable cause and not to willful ne14 glect; and 

15 ‘‘(II) such failure is corrected dur16 ing the 30-day period beginning on the 

17 first date the person otherwise liable 

18 for such penalty knew, or exercising 

19 reasonable diligence would have known, 

20 that such failure existed. 

21 ‘‘(iii) OVERALL LIMITATION FOR UNIN22 TENTIONAL FAILURES.—In the case of fail23 ures which are due to reasonable cause and 

24 not to willful neglect, the penalty imposed 
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1 by subparagraph (A) for failures shall not 

2 exceed the amount equal to the lesser of— 

3 ‘‘(I) 10 percent of the aggregate 

4 amount paid or incurred by the em5 ployer (or predecessor employer) dur6 ing the preceding taxable year for 

7 group health plans; or 

8 ‘‘(II) $500,000. 

9 ‘‘(E) WAIVER BY SECRETARY.—In the case 

10 of a failure which is due to reasonable cause and 

11 not to willful neglect, the Secretary may waive 

12 part or all of the penalty imposed by subpara13 graph (A) to the extent that the payment of such 

14 penalty would be excessive relative to the failure 

15 involved.’’. 

16 (d) DEFINITIONS.—Section 733(d) of the Employee 

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

18 1191b(d)) is amended by adding at the end the following: 

19 ‘‘(5) FAMILY MEMBER.—The term ‘family mem20 ber’ means with respect to an individual— 

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

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

23 including a child who is born to or placed for 

24 adoption with the individual; and 
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1 ‘‘(C) all other individuals related by blood 

2 to the individual or the spouse or child described 

3 in subparagraph (A) or (B). 

4 ‘‘(6) GENETIC INFORMATION.— 

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

6 subparagraph (B), the term ‘genetic information’ 

7 means information about— 

8 ‘‘(i) an individual’s genetic tests; 

9 ‘‘(ii) the genetic tests of family mem10 bers of the individual; or 

11 ‘‘(iii) the occurrence of a disease or 

12 disorder in family members of the indi13 vidual. 

14 ‘‘(B) EXCLUSIONS.—The term ‘genetic in15 formation’ shall not include information about 

16 the sex or age of an individual. 

17 ‘‘(7) GENETIC TEST.— 

18 ‘‘(A) IN GENERAL.—The term ‘genetic test’ 

19 means an analysis of human DNA, RNA, chro20 mosomes, proteins, or metabolites, that detects 

21 genotypes, mutations, or chromosomal changes. 

22 ‘‘(B) EXCEPTIONS.—The term ‘genetic test’ 

23 does not mean— 
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1 ‘‘(i) an analysis of proteins or metabo2 lites that does not detect genotypes, 

3 mutations, or chromosomal changes; or 

4 ‘‘(ii) an analysis of proteins or me5 tabolites that is directly related to a mani6 fested disease, disorder, or pathological con7 dition that could reasonably be detected by 

8 a health care professional with appropriate 

9 training and expertise in the field of medi10 cine involved. 

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

12 services’ means— 

13 ‘‘(A) a genetic test; 

14 ‘‘(B) genetic counseling (such as obtaining, 

15 interpreting, or assessing genetic information); 

16 or 

17 ‘‘(C) genetic education.’’. 

18 (e) REGULATIONS AND EFFECTIVE DATE.— 

19 (1) REGULATIONS.—Not later than 1 year after 

20 the date of enactment of this title, the Secretary of 

21 Labor shall issue final regulations in an accessible 

22 format to carry out the amendments made by this sec23 tion. 

24 (2) EFFECTIVE DATE.—The amendments made 

25 by this section shall apply with respect to group 
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1 health plans for plan years beginning after the date 

2 that is 18 months after the date of enactment of this 

3 title. 

4 SEC. 102. AMENDMENTS TO THE PUBLIC HEALTH SERVICE 

5 ACT. 

6 (a) AMENDMENTS RELATING TO THE GROUP MAR7 KET.— 

8 (1) PROHIBITION OF HEALTH DISCRIMINATION

9 ON THE BASIS OF GENETIC INFORMATION OR GENETIC

10 SERVICES.— 

11 (A) NO ENROLLMENT RESTRICTION FOR GE12 NETIC SERVICES.—Section 2702(a)(1)(F) of the 

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

14 1(a)(1)(F)) is amended by inserting before the 

15 period the following: ‘‘(including information 

16 about a request for or receipt of genetic services 

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

19 (B) NO DISCRIMINATION IN GROUP PRE20 MIUMS BASED ON GENETIC INFORMATION.—Sec21 tion 2702(b) of the Public Health Service Act (42 

22 U.S.C. 300gg–1(b)) is amended— 

23 (i) in paragraph (2)(A), by inserting 

24 before the semicolon the following: ‘‘, except 

25 as provided in paragraph (3)’’; and 
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1 (ii) by adding at the end the following: 

2 ‘‘(3) NO DISCRIMINATION IN GROUP PREMIUMS

3 BASED ON GENETIC INFORMATION.—For purposes of 

4 this section, a group health plan, or a health insur5 ance issuer offering group health insurance coverage 

6 in connection with a group health plan, shall not ad7 just premium or contribution amounts for a group on 

8 the basis of genetic information concerning an indi9 vidual in the group or a family member of the indi10 vidual (including information about a request for or 

11 receipt of genetic services by an individual or family 

12 member of such individual).’’. 

13 (2) LIMITATIONS ON GENETIC TESTING.—Section 

14 2702 of the Public Health Service Act (42 U.S.C. 

15 300gg–1) is amended by adding at the end the fol16 lowing: 

17 ‘‘(c) GENETIC TESTING.— 

18 ‘‘(1) LIMITATION ON REQUESTING OR REQUIRING

19 GENETIC TESTING.—A group health plan, or a health 

20 insurance issuer offering health insurance coverage in 

21 connection with a group health plan, shall not request 

22 or require an individual or a family member of such 

23 individual to undergo a genetic test. 

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

25 part shall be construed to— 
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1 ‘‘(A) limit the authority of a health care 

2 professional who is providing health care services 

3 with respect to an individual to request that 

4 such individual or a family member of such in5 dividual undergo a genetic test; 

6 ‘‘(B) limit the authority of a health care 

7 professional who is employed by or affiliated 

8 with a group health plan or a health insurance 

9 issuer and who is providing health care services 

10 to an individual as part of a bona fide wellness 

11 program to notify such individual of the avail12 ability of a genetic test or to provide information 

13 to such individual regarding such genetic test; or 

14 ‘‘(C) authorize or permit a health care pro15 fessional to require that an individual undergo a 

16 genetic test. 

17 ‘‘(d) APPLICATION TO ALL PLANS.—The provisions of 

18 subsections (a)(1)(F), (b)(3), and (c) shall apply to group 

19 health plans and health insurance issuers without regard 

20 to section 2721(a).’’. 

21 (3) REMEDIES AND ENFORCEMENT.—Section 

22 2722(b) of the Public Health Service Act (42 U.S.C. 

23 300gg–22)(b)) is amended by adding at the end the 

24 following: 
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1 ‘‘(3) ENFORCEMENT AUTHORITY RELATING TO

2 GENETIC DISCRIMINATION.— 

3 ‘‘(A) GENERAL RULE.—In the cases de4 scribed in paragraph (1), notwithstanding the 

5 provisions of paragraph (2)(C), the following 

6 provisions shall apply with respect to an action 

7 under this subsection by the Secretary with re8 spect to any failure of a health insurance issuer 

9 in connection with a group health plan, to meet 

10 the requirements of subsection (a)(1)(F), (b)(3), 

11 or (c) of section 2702. 

12 ‘‘(B) AMOUNT.— 

13 ‘‘(i) IN GENERAL.—The amount of the 

14 penalty imposed under this paragraph shall 

15 be $100 for each day in the noncompliance 

16 period with respect to each individual to 

17 whom such failure relates. 

18 ‘‘(ii) NONCOMPLIANCE PERIOD.—For 

19 purposes of this paragraph, the term ‘non20 compliance period’ means, with respect to 

21 any failure, the period— 

22 ‘‘(I) beginning on the date such 

23 failure first occurs; and 

24 ‘‘(II) ending on the date such fail25 ure is corrected. 
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1 ‘‘(C) MINIMUM PENALTIES WHERE FAILURE

2 DISCOVERED.—Notwithstanding clauses (i) and 

3 (ii) of subparagraph (D): 

4 ‘‘(i) IN GENERAL.—In the case of 1 or 

5 more failures with respect to an indi6 vidual— 

7 ‘‘(I) which are not corrected before 

8 the date on which the plan receives a 

9 notice from the Secretary of such viola10 tion; and 

11 ‘‘(II) which occurred or continued 

12 during the period involved; 

13 the amount of penalty imposed by subpara14 graph (A) by reason of such failures with 

15 respect to such individual shall not be less 

16 than $2,500. 

17 ‘‘(ii) HIGHER MINIMUM PENALTY

18 WHERE VIOLATIONS ARE MORE THAN DE

19 MINIMIS.—To the extent violations for 

20 which any person is liable under this para21 graph for any year are more than de mini22 mis, clause (i) shall be applied by sub23 stituting ‘$15,000’ for ‘$2,500’ with respect 

24 to such person. 

25 ‘‘(D) LIMITATIONS.— 
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1 ‘‘(i) PENALTY NOT TO APPLY WHERE

2 FAILURE NOT DISCOVERED EXERCISING

3 REASONABLE DILIGENCE.—No penalty shall 

4 be imposed by subparagraph (A) on any 

5 failure during any period for which it is es6 tablished to the satisfaction of the Secretary 

7 that the person otherwise liable for such 

8 penalty did not know, and exercising rea9 sonable diligence would not have known, 

10 that such failure existed. 

11 ‘‘(ii) PENALTY NOT TO APPLY TO FAIL12 URES CORRECTED WITHIN CERTAIN PERI13 ODS.—No penalty shall be imposed by sub14 paragraph (A) on any failure if— 

15 ‘‘(I) such failure was due to rea16 sonable cause and not to willful ne17 glect; and 

18 ‘‘(II) such failure is corrected dur19 ing the 30-day period beginning on the 

20 first date the person otherwise liable 

21 for such penalty knew, or exercising 

22 reasonable diligence would have known, 

23 that such failure existed. 

24 ‘‘(iii) OVERALL LIMITATION FOR UNIN25 TENTIONAL FAILURES.—In the case of fail-
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1 ures which are due to reasonable cause and 

2 not to willful neglect, the penalty imposed 

3 by subparagraph (A) for failures shall not 

4 exceed the amount equal to the lesser of— 

5 ‘‘(I) 10 percent of the aggregate 

6 amount paid or incurred by the em7 ployer (or predecessor employer) dur8 ing the preceding taxable year for 

9 group health plans; or 

10 ‘‘(II) $500,000. 

11 ‘‘(E) WAIVER BY SECRETARY.—In the case 

12 of a failure which is due to reasonable cause and 

13 not to willful neglect, the Secretary may waive 

14 part or all of the penalty imposed by subpara15 graph (A) to the extent that the payment of such 

16 penalty would be excessive relative to the failure 

17 involved.’’. 

18 (4) DEFINITIONS.—Section 2791(d) of the Public 

19 Health Service Act (42 U.S.C. 300gg–91(d)) is 

20 amended by adding at the end the following: 

21 ‘‘(15) FAMILY MEMBER.—The term ‘family mem22 ber’ means with respect to an individual— 

23 ‘‘(A) the spouse of the individual; 
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1 ‘‘(B) a dependent child of the individual, 

2 including a child who is born to or placed for 

3 adoption with the individual; and 

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

5 to the individual or the spouse or child described 

6 in subparagraph (A) or (B). 

7 ‘‘(16) GENETIC INFORMATION.— 

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

9 subparagraph (B), the term ‘genetic information’ 

10 means information about— 

11 ‘‘(i) an individual’s genetic tests; 

12 ‘‘(ii) the genetic tests of family mem13 bers of the individual; or 

14 ‘‘(iii) the occurrence of a disease or 

15 disorder in family members of the indi16 vidual. 

17 ‘‘(B) EXCLUSIONS.—The term ‘genetic in18 formation’ shall not include information about 

19 the sex or age of an individual. 

20 ‘‘(17) GENETIC TEST.— 

21 ‘‘(A) IN GENERAL.—The term ‘genetic test’ 

22 means an analysis of human DNA, RNA, chro23 mosomes, proteins, or metabolites, that detects 

24 genotypes, mutations, or chromosomal changes. 
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1 ‘‘(B) EXCEPTIONS.—The term ‘genetic test’ 

2 does not mean— 

3 ‘‘(i) an analysis of proteins or metabo4 lites that does not detect genotypes, 

5 mutations, or chromosomal changes; or 

6 ‘‘(ii) an analysis of proteins or me7 tabolites that is directly related to a mani8 fested disease, disorder, or pathological con9 dition that could reasonably be detected by 

10 a health care professional with appropriate 

11 training and expertise in the field of medi12 cine involved. 

13 ‘‘(18) GENETIC SERVICES.—The term ‘genetic 

14 services’ means— 

15 ‘‘(A) a genetic test; 

16 ‘‘(B) genetic counseling (such as obtaining, 

17 interpreting, or assessing genetic information); 

18 or 

19 ‘‘(C) genetic education.’’. 

20 (b) AMENDMENT RELATING TO THE INDIVIDUAL MAR21 KET.— 

22 (1) IN GENERAL.—The first subpart 3 of part B 

23 of title XXVII of the Public Health Service Act (42 

24 U.S.C. 300gg–51 et seq.) (relating to other require25 ments) is amended— 
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1 (A) by redesignating such subpart as sub2 part 2; and 

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

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

5 THE BASIS OF GENETIC INFORMATION. 

6 ‘‘(a) PROHIBITION ON GENETIC INFORMATION AS A

7 CONDITION OF ELIGIBILITY.—A health insurance issuer of8 fering health insurance coverage in the individual market 

9 may not establish rules for the eligibility (including contin10 ued eligibility) of any individual to enroll in individual 

11 health insurance coverage based on genetic information (in12 cluding information about a request for or receipt of genetic 

13 services by an individual or family member of such indi14 vidual). 

15 ‘‘(b) PROHIBITION ON GENETIC INFORMATION IN SET16 TING PREMIUM RATES.—A health insurance issuer offering 

17 health insurance coverage in the individual market shall 

18 not adjust premium or contribution amounts for an indi19 vidual on the basis of genetic information concerning the 

20 individual or a family member of the individual (including 

21 information about a request for or receipt of genetic services 

22 by an individual or family member of such individual). 

23 ‘‘(c) GENETIC TESTING.— 

24 ‘‘(1) LIMITATION ON REQUESTING OR REQUIRING

25 GENETIC TESTING.—A health insurance issuer offer-
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1 ing health insurance coverage in the individual mar2 ket shall not request or require an individual or a 

3 family member of such individual to undergo a ge4 netic test. 

5 ‘‘(2) RULE OF CONSTRUCTION.—Nothing in this 

6 part shall be construed to— 

7 ‘‘(A) limit the authority of a health care 

8 professional who is providing health care services 

9 with respect to an individual to request that 

10 such individual or a family member of such in11 dividual undergo a genetic test; 

12 ‘‘(B) limit the authority of a health care 

13 professional who is employed by or affiliated 

14 with a health insurance issuer and who is pro15 viding health care services to an individual as 

16 part of a bona fide wellness program to notify 

17 such individual of the availability of a genetic 

18 test or to provide information to such individual 

19 regarding such genetic test; or 

20 ‘‘(C) authorize or permit a health care pro21 fessional to require that an individual undergo a 

22 genetic test.’’. 

23 (2) REMEDIES AND ENFORCEMENT.—Section 

24 2761(b) of the Public Health Service Act (42 U.S.C. 

25 300gg–61)(b)) is amended to read as follows: 
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1 ‘‘(b) SECRETARIAL ENFORCEMENT AUTHORITY.—The 

2 Secretary shall have the same authority in relation to en3 forcement of the provisions of this part with respect to 

4 issuers of health insurance coverage in the individual mar5 ket in a State as the Secretary has under section 2722(b)(2), 

6 and section 2722(b)(3) with respect to violations of genetic 

7 nondiscrimination provisions, in relation to the enforce8 ment of the provisions of part A with respect to issuers of 

9 health insurance coverage in the small group market in the 

10 State.’’. 

11 (c) ELIMINATION OF OPTION OF NON-FEDERAL GOV12 ERNMENTAL PLANS TO BE EXCEPTED FROM REQUIRE13 MENTS CONCERNING GENETIC INFORMATION.—Section 

14 2721(b)(2) of the Public Health Service Act (42 U.S. C. 

15 300gg–21(b)(2)) is amended— 

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

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

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

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

20 ‘‘(D) ELECTION NOT APPLICABLE TO RE21 QUIREMENTS CONCERNING GENETIC INFORMA22 TION.—The election described in subparagraph 

23 (A) shall not be available with respect to the pro24 visions of subsections (a)(1)(F) and (c) of section 

25 2702 and the provisions of section 2702(b) to the 
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1 extent that such provisions apply to genetic in2 formation (or information about a request for or 

3 the receipt of genetic services by an individual or 

4 a family member of such individual).’’. 

5 (d) REGULATIONS AND EFFECTIVE DATE.— 

6 (1) REGULATIONS.—Not later than 1 year after 

7 the date of enactment of this title, the Secretary of 

8 Labor and the Secretary of Health and Human Serv9 ices (as the case may be) shall issue final regulations 

10 in an accessible format to carry out the amendments 

11 made by this section. 

12 (2) EFFECTIVE DATE.—The amendments made 

13 by this section shall apply— 

14 (A) with respect to group health plans, and 

15 health insurance coverage offered in connection 

16 with group health plans, for plan years begin17 ning after the date that is 18 months after the 

18 date of enactment of this title; and 

19 (B) with respect to health insurance cov20 erage offered, sold, issued, renewed, in effect, or 

21 operated in the individual market after the date 

22 that is 18 months after the date of enactment of 

23 this title. 
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1 SEC. 103. AMENDMENTS TO THE INTERNAL REVENUE CODE 

2 OF 1986. 

3 (a) PROHIBITION OF HEALTH DISCRIMINATION ON

4 THE BASIS OF GENETIC INFORMATION OR GENETIC SERV5 ICES.— 

6 (1) NO ENROLLMENT RESTRICTION FOR GENETIC

7 SERVICES.—Section 9802(a)(1)(F) of the Internal 

8 Revenue Code of 1986 is amended by inserting before 

9 the period the following: ‘‘(including information 

10 about a request for or receipt of genetic services by an 

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

12 (2) NO DISCRIMINATION IN GROUP PREMIUMS

13 BASED ON GENETIC INFORMATION.—Section 9802(b) 

14 of the Internal Revenue Code of 1986 is amended— 

15 (A) in paragraph (2)(A), by inserting before 

16 the semicolon the following: ‘‘, except as provided 

17 in paragraph (3)’’; and 

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

19 ‘‘(3) NO DISCRIMINATION IN GROUP PREMIUMS

20 BASED ON GENETIC INFORMATION.—For purposes of 

21 this section, a group health plan shall not adjust pre22 mium or contribution amounts for a group on the 

23 basis of genetic information concerning an individual 

24 in the group or a family member of the individual 

25 (including information about a request for or receipt 
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1 of genetic services by an individual or family member 

2 of such individual).’’. 

3 (b) LIMITATIONS ON GENETIC TESTING.—Section 

4 9802 of the Internal Revenue Code of 1986 is amended by 

5 adding at the end the following: 

6 ‘‘(d) GENETIC TESTING AND GENETIC SERVICES.— 

7 ‘‘(1) LIMITATION ON REQUESTING OR REQUIRING

8 GENETIC TESTING.—A group health plan shall not re9 quest or require an individual or a family member of 

10 such individual to undergo a genetic test. 

11 ‘‘(2) RULE OF CONSTRUCTION.—Nothing in this 

12 part shall be construed to— 

13 ‘‘(A) limit the authority of a health care 

14 professional who is providing health care services 

15 with respect to an individual to request that 

16 such individual or a family member of such in17 dividual undergo a genetic test; 

18 ‘‘(B) limit the authority of a health care 

19 professional who is employed by or affiliated 

20 with a group health plan and who is providing 

21 health care services to an individual as part of 

22 a bona fide wellness program to notify such indi23 vidual of the availability of a genetic test or to 

24 provide information to such individual regard25 ing such genetic test; or 
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1 ‘‘(C) authorize or permit a health care pro2 fessional to require that an individual undergo a 

3 genetic test. 

4 ‘‘(e) APPLICATION TO ALL PLANS.—The provisions of 

5 subsections (a)(1)(F), (b)(3), and (d) shall apply to group 

6 health plans and health insurance issuers without regard 

7 to section 9831(a)(2).’’. 

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

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

10 the following: 

11 ‘‘(6) FAMILY MEMBER.—The term ‘family mem12 ber’ means with respect to an individual— 

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

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

15 including a child who is born to or placed for 

16 adoption with the individual; and 

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

18 to the individual or the spouse or child described 

19 in subparagraph (A) or (B). 

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

21 services’ means— 

22 ‘‘(A) a genetic test; 

23 ‘‘(B) genetic counseling (such as obtaining, 

24 interpreting, or assessing genetic information); 

25 or 
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1 ‘‘(C) genetic education. 

2 ‘‘(8) GENETIC INFORMATION.— 

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

4 subparagraph (B), the term ‘genetic information’ 

5 means information about— 

6 ‘‘(i) an individual’s genetic tests; 

7 ‘‘(ii) the genetic tests of family mem8 bers of the individual; or 

9 ‘‘(iii) the occurrence of a disease or 

10 disorder in family members of the indi11 vidual. 

12 ‘‘(B) EXCLUSIONS.—The term ‘genetic in13 formation’ shall not include information about 

14 the sex or age of an individual. 

15 ‘‘(9) GENETIC TEST.— 

16 ‘‘(A) IN GENERAL.—The term ‘genetic test’ 

17 means an analysis of human DNA, RNA, chro18 mosomes, proteins, or metabolites, that detects 

19 genotypes, mutations, or chromosomal changes. 

20 ‘‘(B) EXCEPTIONS.—The term ‘genetic test’ 

21 does not mean— 

22 ‘‘(i) an analysis of proteins or metabo23 lites that does not detect genotypes, 

24 mutations, or chromosomal changes; or 
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1 ‘‘(ii) an analysis of proteins or me2 tabolites that is directly related to a mani3 fested disease, disorder, or pathological con4 dition that could reasonably be detected by 

5 a health care professional with appropriate 

6 training and expertise in the field of medi7 cine involved.’’. 

8 (d) REGULATIONS AND EFFECTIVE DATE.— 

9 (1) REGULATIONS.—Not later than 1 year after 

10 the date of enactment of this title, the Secretary of the 

11 Treasury shall issue final regulations in an accessible 

12 format to carry out the amendments made by this sec13 tion. 

14 (2) EFFECTIVE DATE.—The amendments made 

15 by this section shall apply with respect to group 

16 health plans for plan years beginning after the date 

17 that is 18 months after the date of enactment of this 

18 title. 

19 SEC. 104. AMENDMENTS TO TITLE XVIII OF THE SOCIAL SE20 CURITY ACT RELATING TO MEDIGAP. 

21 (a) NONDISCRIMINATION.— 

22 (1) IN GENERAL.—Section 1882(s)(2) of the So23 cial Security Act (42 U.S.C. 1395ss(s)(2)) is amended 

24 by adding at the end the following: 
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1 ‘‘(E)(i) An issuer of a medicare supple2 mental policy shall not deny or condition the 

3 issuance or effectiveness of the policy, and shall 

4 not discriminate in the pricing of the policy (in5 cluding the adjustment of premium rates) of an 

6 eligible individual on the basis of genetic infor7 mation concerning the individual (or informa8 tion about a request for, or the receipt of, genetic 

9 services by such individual or family member of 

10 such individual). 

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

12 ‘family member’, ‘genetic services’, and ‘genetic 

13 information’ shall have the meanings given such 

14 terms in subsection (x).’’. 

15 (2) EFFECTIVE DATE.—The amendment made by 

16 paragraph (1) shall apply with respect to a policy for 

17 policy years beginning after the date that is 18 

18 months after the date of enactment of this Act. 

19 (b) LIMITATIONS ON GENETIC TESTING.— 

20 (1) IN GENERAL.—Section 1882 of the Social Se21 curity Act (42 U.S.C. 1395ss) is amended by adding 

22 at the end the following: 

23 ‘‘(x) LIMITATIONS ON GENETIC TESTING.— 

24 ‘‘(1) GENETIC TESTING.— 
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1 ‘‘(A) LIMITATION ON REQUESTING OR RE2 QUIRING GENETIC TESTING.—An issuer of a 

3 medicare supplemental policy shall not request 

4 or require an individual or a family member of 

5 such individual to undergo a genetic test. 

6 ‘‘(B) RULE OF CONSTRUCTION.—Nothing in 

7 this title shall be construed to— 

8 ‘‘(i) limit the authority of a health 

9 care professional who is providing health 

10 care services with respect to an individual 

11 to request that such individual or a family 

12 member of such individual undergo a ge13 netic test; 

14 ‘‘(ii) limit the authority of a health 

15 care professional who is employed by or af16 filiated with an issuer of a medicare supple17 mental policy and who is providing health 

18 care services to an individual as part of a 

19 bona fide wellness program to notify such 

20 individual of the availability of a genetic 

21 test or to provide information to such indi22 vidual regarding such genetic test; or 

23 ‘‘(iii) authorize or permit a health care 

24 professional to require that an individual 

25 undergo a genetic test. 
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1 ‘‘(2) DEFINITIONS.—In this subsection: 

2 ‘‘(A) FAMILY MEMBER.—The term ‘family 

3 member’ means with respect to an individual— 

4 ‘‘(i) the spouse of the individual; 

5 ‘‘(ii) a dependent child of the indi6 vidual, including a child who is born to or 

7 placed for adoption with the individual; or 

8 ‘‘(iii) any other individuals related by 

9 blood to the individual or to the spouse or 

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

11 ‘‘(B) GENETIC INFORMATION.— 

12 ‘‘(i) IN GENERAL.—Except as provided 

13 in clause (ii), the term ‘genetic information’ 

14 means information about— 

15 ‘‘(I) an individual’s genetic tests; 

16 ‘‘(II) the genetic tests of family 

17 members of the individual; or 

18 ‘‘(III) the occurrence of a disease 

19 or disorder in family members of the 

20 individual. 

21 ‘‘(ii) EXCLUSIONS.—The term ‘genetic 

22 information’ shall not include information 

23 about the sex or age of an individual. 

24 ‘‘(C) GENETIC TEST.— 
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1 ‘‘(i) IN GENERAL.—The term ‘genetic 

2 test’ means an analysis of human DNA, 

3 RNA, chromosomes, proteins, or metabolites, 

4 that detects genotypes, mutations, or chro5 mosomal changes. 

6 ‘‘(ii) EXCEPTIONS.—The term ‘genetic 

7 test’ does not mean— 

8 ‘‘(I) an analysis of proteins or 

9 metabolites that does not detect 

10 genotypes, mutations, or chromosomal 

11 changes; or 

12 ‘‘(II) an analysis of proteins or 

13 metabolites that is directly related to a 

14 manifested disease, disorder, or patho15 logical condition that could reasonably 

16 be detected by a health care profes17 sional with appropriate training and 

18 expertise in the field of medicine in19 volved. 

20 ‘‘(D) GENETIC SERVICES.—The term ‘ge21 netic services’ means— 

22 ‘‘(i) a genetic test; 

23 ‘‘(ii) genetic counseling (such as ob24 taining, interpreting, or assessing genetic 

25 information); or 
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1 ‘‘(iii) genetic education. 

2 ‘‘(E) ISSUER OF A MEDICARE SUPPLE3 MENTAL POLICY.—The term ‘issuer of a medicare 

4 supplemental policy’ includes a third-party ad5 ministrator or other person acting for or on be6 half of such issuer.’’. 

7 (2) CONFORMING AMENDMENT.—Section 1882(o) 

8 of the Social Security Act (42 U.S.C. 1395ss(o)) is 

9 amended by adding at the end the following: 

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

11 policy complies with subsection (s)(2)(E) and sub12 section (x).’’. 

13 (3) EFFECTIVE DATE.—The amendments made 

14 by this subsection shall apply with respect to an 

15 issuer of a medicare supplemental policy for policy 

16 years beginning on or after the date that is 18 months 

17 after the date of enactment of this Act. 

18 (c) TRANSITION PROVISIONS.— 

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

20 Human Services identifies a State as requiring a 

21 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 requirements 

25 of section 1882 of the Social Security Act due solely 
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1 to failure to make such change until the date specified 

2 in paragraph (4). 

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

4 30, 2006, the National Association of Insurance Com5 missioners (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 regulation 

13 (including the revised NAIC model regulation and the 

14 1991 NAIC Model Regulation) for the purposes of 

15 such section. 

16 (3) SECRETARY STANDARDS.—If the NAIC does 

17 not make the modifications described in paragraph 

18 (2) within the period specified in such paragraph, the 

19 Secretary of Health and Human Services shall, not 

20 later than October 1, 2006, make the modifications 

21 described in such paragraph and such revised regula22 tion incorporating the modifications shall be consid23 ered to be the appropriate regulation for the purposes 

24 of such section. 

25 (4) DATE SPECIFIED.— 
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1 (A) IN GENERAL.—Subject to subparagraph 

2 (B), the date specified in this paragraph for a 

3 State is the earlier of— 

4 (i) the date the State changes its stat5 utes or regulations to conform its regulatory 

6 program to the changes made by this sec7 tion, or 

8 (ii) October 1, 2006. 

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 2006 in a legislative 

18 session in which such legislation may be 

19 considered, the date specified in this para20 graph is the first day of the first calendar 

21 quarter beginning after the close of the first 

22 legislative session of the State legislature 

23 that begins on or after July 1, 2006. For 

24 purposes of the previous sentence, in the 

25 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 

3 the State legislature. 

4 SEC. 105. PRIVACY AND CONFIDENTIALITY. 

5 (a) APPLICABILITY.—Except as provided in subsection 

6 (d), the provisions of this section shall apply to group health 

7 plans, health insurance issuers (including issuers in connec8 tion with group health plans or individual health coverage), 

9 and issuers of medicare supplemental policies, without re10 gard to— 

11 (1) section 732(a) of the Employee Retirement 

12 Income Security Act of 1974 (29 U.S.C. 1191a(a)); 

13 (2) section 2721(a) of the Public Health Service 

14 Act (42 U.S.C. 300gg–21(a)); and 

15 (3) section 9831(a)(2) of the Internal Revenue 

16 Code of 1986. 

17 (b) COMPLIANCE WITH CERTAIN CONFIDENTIALITY

18 STANDARDS WITH RESPECT TO GENETIC INFORMATION.— 

19 (1) IN GENERAL.—The regulations promulgated 

20 by the Secretary of Health and Human Services 

21 under part C of title XI of the Social Security Act 

22 (42 U.S.C. 1320d et seq.) and section 264 of the 

23 Health Insurance Portability and Accountability Act 

24 of 1996 (42 U.S.C. 1320d–2 note) shall apply to the 

25 use or disclosure of genetic information. 
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1 (2) PROHIBITION ON UNDERWRITING AND PRE2 MIUM RATING.—Notwithstanding paragraph (1), a 

3 group health plan, a health insurance issuer, or issuer 

4 of a medicare supplemental policy shall not use or 

5 disclose genetic information (including information 

6 about a request for or a receipt of genetic services by 

7 an individual or family member of such individual) 

8 for purposes of underwriting, determinations of eligi9 bility to enroll, premium rating, or the creation, re10 newal or replacement of a plan, contract or coverage 

11 for health insurance or health benefits. 

12 (c) PROHIBITION ON COLLECTION OF GENETIC INFOR13 MATION.— 

14 (1) IN GENERAL.—A group health plan, health 

15 insurance issuer, or issuer of a medicare supple16 mental policy shall not request, require, or purchase 

17 genetic information (including information about a 

18 request for or a receipt of genetic services by an indi19 vidual or family member of such individual) for pur20 poses of underwriting, determinations of eligibility to 

21 enroll, premium rating, or the creation, renewal or 

22 replacement of a plan, contract or coverage for health 

23 insurance or health benefits. 

24 (2) LIMITATION RELATING TO THE COLLECTION

25 OF GENETIC INFORMATION PRIOR TO ENROLLMENT.—
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1 A group health plan, health insurance issuer, or 

2 issuer of a medicare supplemental policy shall not re3 quest, require, or purchase genetic information (in4 cluding information about a request for or a receipt 

5 of genetic services by an individual or family member 

6 of such individual) concerning a participant, bene7 ficiary, or enrollee prior to the enrollment, and in 

8 connection with such enrollment, of such individual 

9 under the plan, coverage, or policy. 

10 (3) INCIDENTAL COLLECTION.—Where a group 

11 health plan, health insurance issuer, or issuer of a 

12 medicare supplemental policy obtains genetic infor13 mation incidental to the requesting, requiring, or 

14 purchasing of other information concerning a partici15 pant, beneficiary, or enrollee, such request, require16 ment, or purchase shall not be considered a violation 

17 of this subsection if— 

18 (A) such request, requirement, or purchase 

19 is not in violation of paragraph (1); and 

20 (B) any genetic information (including in21 formation about a request for or receipt of ge22 netic services) requested, required, or purchased 

23 is not used or disclosed in violation of subsection 

24 (b). 
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1 (d) APPLICATION OF CONFIDENTIALITY STANDARDS.—

2 The provisions of subsections (b) and (c) shall not apply— 

3 (1) to group health plans, health insurance 

4 issuers, or issuers of medicare supplemental policies 

5 that are not otherwise covered under the regulations 

6 promulgated by the Secretary of Health and Human 

7 Services under part C of title XI of the Social Secu8 rity Act (42 U.S.C. 1320d et seq.) and section 264 of 

9 the Health Insurance Portability and Accountability 

10 Act of 1996 (42 U.S.C. 1320d–2 note); and 

11 (2) to genetic information that is not considered 

12 to be individually-identifiable health information 

13 under the regulations promulgated by the Secretary of 

14 Health and Human Services under part C of title XI 

15 of the Social Security Act (42 U.S.C. 1320d et seq.) 

16 and section 264 of the Health Insurance Portability 

17 and Accountability Act of 1996 (42 U.S.C. 1320d–2 

18 note). 

19 (e) ENFORCEMENT.—A group health plan, health in20 surance issuer, or issuer of a medicare supplemental policy 

21 that violates a provision of this section shall be subject to 

22 the penalties described in sections 1176 and 1177 of the So23 cial Security Act (42 U.S.C. 1320d–5 and 1320d–6) in the 

24 same manner and to the same extent that such penalties 

25 apply to violations of part C of title XI of such Act. 
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1 (f) PREEMPTION.— 

2 (1) IN GENERAL.—A provision or requirement 

3 under this section or a regulation promulgated under 

4 this section shall supersede any contrary provision of 

5 State law unless such provision of State law imposes 

6 requirements, standards, or implementation specifica7 tions that are more stringent than the requirements, 

8 standards, or implementation specifications imposed 

9 under this section or such regulations. No penalty, 

10 remedy, or cause of action to enforce such a State law 

11 that is more stringent shall be preempted by this sec12 tion. 

13 (2) RULE OF CONSTRUCTION.—Nothing in para14 graph (1) shall be construed to establish a penalty, 

15 remedy, or cause of action under State law if such 

16 penalty, remedy, or cause of action is not otherwise 

17 available under such State law. 

18 (g) COORDINATION WITH PRIVACY REGULATIONS.—

19 The Secretary shall implement and administer this section 

20 in a manner that is consistent with the implementation and 

21 administration by the Secretary of the regulations promul22 gated by the Secretary of Health and Human Services 

23 under part C of title XI of the Social Security Act (42 

24 U.S.C. 1320d et seq.) and section 264 of the Health Insur-
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1 ance Portability and Accountability Act of 1996 (42 U.S.C. 

2 1320d–2 note). 

3 (h) DEFINITIONS.—In this section: 

4 (1) GENETIC INFORMATION; GENETIC SERV5 ICES.—The terms ‘‘family member’’, ‘‘genetic infor6 mation’’, ‘‘genetic services’’, and ‘‘genetic test’’ have 

7 the meanings given such terms in section 2791 of the 

8 Public Health Service Act (42 U.S.C. 300gg–91), as 

9 amended by this Act. 

10 (2) GROUP HEALTH PLAN; HEALTH INSURANCE

11 ISSUER.—The terms ‘‘group health plan’’ and ‘‘health 

12 insurance issuer’’ include only those plans and issuers 

13 that are covered under the regulations described in 

14 subsection (d)(1). 

15 (3) ISSUER OF A MEDICARE SUPPLEMENTAL POL16 ICY.—The term ‘‘issuer of a medicare supplemental 

17 policy’’ means an issuer described in section 1882 of 

18 the Social Security Act (42 insert 1395ss). 

19 (4) SECRETARY.—The term ‘‘Secretary’’ means 

20 the Secretary of Health and Human Services. 

21 SEC. 106. ASSURING COORDINATION. 

22 (a) IN GENERAL.—Except as provided in subsection 

23 (b), the Secretary of the Treasury, the Secretary of Health 

24 and Human Services, and the Secretary of Labor shall en-
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1 sure, through the execution of an interagency memorandum 

2 of understanding among such Secretaries, that— 

3 (1) regulations, rulings, and interpretations 

4 issued by such Secretaries relating to the same matter 

5 over which two or more such Secretaries have respon6 sibility under this title (and the amendments made by 

7 this title) are administered so as to have the same ef8 fect at all times; and 

9 (2) coordination of policies relating to enforcing 

10 the same requirements through such Secretaries in 

11 order to have a coordinated enforcement strategy that 

12 avoids duplication of enforcement efforts and assigns 

13 priorities in enforcement. 

14 (b) AUTHORITY OF THE SECRETARY.—The Secretary 

15 of Health and Human Services has the sole authority to 

16 promulgate regulations to implement section 105. 

17 SEC. 107. REGULATIONS; EFFECTIVE DATE. 

18 (a) REGULATIONS.—Not later than 1 year after the 

19 date of enactment of this title, the Secretary of Labor, the 

20 Secretary of Health and Human Services, and the Sec21 retary of the Treasury shall issue final regulations in an 

22 accessible format to carry out this title. 

23 (b) EFFECTIVE DATE.—Except as provided in section 

24 104, the amendments made by this title shall take effect on 
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1 the date that is 18 months after the date of enactment of 

2 this Act. 

3 TITLE II—PROHIBITING EMPLOY4 MENT DISCRIMINATION ON 

5 THE BASIS OF GENETIC IN6 FORMATION 

7 SEC. 201. DEFINITIONS. 

8 In this title: 

9 (1) COMMISSION.—The term ‘‘Commission’’ 

10 means the Equal Employment Opportunity Commis11 sion as created by section 705 of the Civil Rights Act 

12 of 1964 (42 U.S.C. 2000e–4). 

13 (2) EMPLOYEE; EMPLOYER; EMPLOYMENT AGEN14 CY; LABOR ORGANIZATION; MEMBER.— 

15 (A) IN GENERAL.—The term ‘‘employee’’ 

16 means— 

17 (i) an employee (including an appli18 cant), as defined in section 701(f) of the 

19 Civil Rights Act of 1964 (42 U.S.C. 

20 2000e(f)); 

21 (ii) a State employee (including an 

22 applicant) described in section 304(a) of the 

23 Government Employee Rights Act of 1991 

24 (42 U.S.C. 2000e–16c(a)); 
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1 (iii) a covered employee (including an 

2 applicant), as defined in section 101 of the 

3 Congressional Accountability Act of 1995 (2 

4 U.S.C. 1301); 

5 (iv) a covered employee (including an 

6 applicant), as defined in section 411(c) of 

7 title 3, United States Code; or 

8 (v) an employee or applicant to which 

9 section 717(a) of the Civil Rights Act of 

10 1964 (42 U.S.C. 2000e–16(a)) applies. 

11 (B) EMPLOYER.—The term ‘‘employer’’ 

12 means— 

13 (i) an employer (as defined in section 

14 701(b) of the Civil Rights Act of 1964 (42 

15 U.S.C. 2000e(b)); 

16 (ii) an entity employing a State em17 ployee described in section 304(a) of the 

18 Government Employee Rights Act of 1991; 

19 (iii) an employing office, as defined in 

20 section 101 of the Congressional Account21 ability Act of 1995; 

22 (iv) an employing office, as defined in 

23 section 411(c) of title 3, United States Code; 

24 or 
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1 (v) an entity to which section 717(a) of 

2 the Civil Rights Act of 1964 applies. 

3 (C) EMPLOYMENT AGENCY; LABOR ORGANI4 ZATION.—The terms ‘‘employment agency’’ and 

5 ‘‘labor organization’’ have the meanings given 

6 the terms in section 701 of the Civil Rights Act 

7 of 1964 (42 U.S.C. 2000e). 

8 (D) MEMBER.—The term ‘‘member’’, with 

9 respect to a labor organization, includes an ap10 plicant for membership in a labor organization. 

11 (3) FAMILY MEMBER.—The term ‘‘family mem12 ber’’ means with respect to an individual— 

13 (A) the spouse of the individual; 

14 (B) a dependent child of the individual, in15 cluding a child who is born to or placed for 

16 adoption with the individual; and 

17 (C) all other individuals related by blood to 

18 the individual or the spouse or child described in 

19 subparagraph (A) or (B). 

20 (4) GENETIC INFORMATION.— 

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

22 subparagraph (B), the term ‘‘genetic informa23 tion’’ means information about— 

24 (i) an individual’s genetic tests; 
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1 (ii) the genetic tests of family members 

2 of the individual; or 

3 (iii) the occurrence of a disease or dis4 order in family members of the individual. 

5 (B) EXCEPTIONS.—The term ‘‘genetic infor6 mation’’ shall not include information about the 

7 sex or age of an individual. 

8 (5) GENETIC MONITORING.—The term ‘‘genetic 

9 monitoring’’ means the periodic examination of em10 ployees to evaluate acquired modifications to their ge11 netic material, such as chromosomal damage or evi12 dence of increased occurrence of mutations, that may 

13 have developed in the course of employment due to ex14 posure to toxic substances in the workplace, in order 

15 to identify, evaluate, and respond to the effects of or 

16 control adverse environmental exposures in the work17 place. 

18 (6) GENETIC SERVICES.—The term ‘‘genetic serv19 ices’’ means— 

20 (A) a genetic test; 

21 (B) genetic counseling (such as obtaining, 

22 interpreting or assessing genetic information); or 

23 (C) genetic education. 

24 (7) GENETIC TEST.— 
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1 (A) IN GENERAL.—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 (B) EXCEPTION.—The term ‘‘genetic test’’ 

6 does not mean an analysis of proteins or metabo7 lites that does not detect genotypes, mutations, or 

8 chromosomal changes. 

9 SEC. 202. EMPLOYER PRACTICES. 

10 (a) USE OF GENETIC INFORMATION.—It shall be an 

11 unlawful employment practice for an employer— 

12 (1) to fail or refuse to hire or to discharge any 

13 employee, or otherwise to discriminate against any 

14 employee with respect to the compensation, terms, 

15 conditions, or privileges of employment of the em16 ployee, because of genetic information with respect to 

17 the employee (or information about a request for or 

18 the receipt of genetic services by such employee or 

19 family member of such employee); or 

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

21 of the employer in any way that would deprive or 

22 tend to deprive any employee of employment opportu23 nities or otherwise adversely affect the status of the 

24 employee as an employee, because of genetic informa25 tion with respect to the employee (or information 
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1 about a request for or the receipt of genetic services 

2 by such employee or family member of such em3 ployee). 

4 (b) ACQUISITION OF GENETIC INFORMATION.—It shall 

5 be an unlawful employment practice for an employer to re6 quest, require, or purchase genetic information with respect 

7 to an employee or a family member of the employee (or in8 formation about a request for the receipt of genetic services 

9 by such employee or a family member of such employee) 

10 except— 

11 (1) where an employer inadvertently requests or 

12 requires family medical history of the employee or 

13 family member of the employee; 

14 (2) where— 

15 (A) health or genetic services are offered by 

16 the employer, including such services offered as 

17 part of a bona fide wellness program; 

18 (B) the employee provides prior, knowing, 

19 voluntary, and written authorization; 

20 (C) only the employee (or family member if 

21 the family member is receiving genetic services) 

22 and the licensed health care professional or board 

23 certified genetic counselor involved in providing 

24 such services receive individually identifiable in-
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1 formation concerning the results of such services; 

2 and 

3 (D) any individually identifiable genetic 

4 information provided under subparagraph (C) in 

5 connection with the services provided under sub6 paragraph (A) is only available for purposes of 

7 such services and shall not be disclosed to the em8 ployer except in aggregate terms that do not dis9 close the identity of specific employees; 

10 (3) where an employer requests or requires fam11 ily medical history from the employee to comply with 

12 the certification provisions of section 103 of the Fam13 ily and Medical Leave Act of 1993 (29 U.S.C. 2613) 

14 or such requirements under State family and medical 

15 leave laws; 

16 (4) where an employer purchases documents that 

17 are commercially and publicly available (including 

18 newspapers, magazines, periodicals, and books, but 

19 not including medical databases or court records) that 

20 include family medical history; or 

21 (5) where the information involved is to be used 

22 for genetic monitoring of the biological effects of toxic 

23 substances in the workplace, but only if— 

24 (A) the employer provides written notice of 

25 the genetic monitoring to the employee; 
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1 (B)(i) the employee provides prior, know2 ing, voluntary, and written authorization; or 

3 (ii) the genetic monitoring is required by 

4 Federal or State law; 

5 (C) the employee is informed of individual 

6 monitoring results; 

7 (D) the monitoring is in compliance with— 

8 (i) any Federal genetic monitoring reg9 ulations, including any such regulations 

10 that may be promulgated by the Secretary 

11 of Labor pursuant to the Occupational 

12 Safety and Health Act of 1970 (29 U.S.C. 

13 651 et seq.), the Federal Mine Safety and 

14 Health Act of 1977 (30 U.S.C. 801 et seq.), 

15 or the Atomic Energy Act of 1954 (42 

16 U.S.C. 2011 et seq.); or 

17 (ii) State genetic monitoring regula18 tions, in the case of a State that is imple19 menting genetic monitoring regulations 

20 under the authority of the Occupational 

21 Safety and Health Act of 1970 (29 U.S.C. 

22 651 et seq.); and 

23 (E) the employer, excluding any licensed 

24 health care professional or board certified genetic 

25 counselor that is involved in the genetic moni-
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1 toring program, receives the results of the moni2 toring only in aggregate terms that do not dis3 close the identity of specific employees; 

4 (c) PRESERVATION OF PROTECTIONS.—In the case of 

5 information to which any of paragraphs (1) through (5) 

6 of subsection (b) applies, such information may not be used 

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

8 treated or disclosed in a manner that violates section 206. 

9 SEC. 203. EMPLOYMENT AGENCY PRACTICES. 

10 (a) USE OF GENETIC INFORMATION.—It shall be an 

11 unlawful employment practice for an employment agency— 

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

13 otherwise to discriminate against, any individual be14 cause of genetic information with respect to the indi15 vidual (or information about a request for or the re16 ceipt of genetic services by such individual or family 

17 member of such individual); 

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

19 fail or refuse to refer for employment any individual 

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

21 individual of employment opportunities, or otherwise 

22 adversely affect the status of the individual as an em23 ployee, because of genetic information with respect to 

24 the individual (or information about a request for or 
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1 the receipt of genetic services by such individual or 

2 family member of such individual); or 

3 (3) to cause or attempt to cause an employer to 

4 discriminate against an individual in violation of 

5 this title. 

6 (b) ACQUISITION OF GENETIC INFORMATION.—It shall 

7 be an unlawful employment practice for an employment 

8 agency to request, require, or purchase genetic information 

9 with respect to an individual or a family member of the 

10 individual (or information about a request for the receipt 

11 of genetic services by such individual or a family member 

12 of such individual) except— 

13 (1) where an employment agency inadvertently 

14 requests or requires family medical history of the in15 dividual or family member of the individual; 

16 (2) where— 

17 (A) health or genetic services are offered by 

18 the employment agency, including such services 

19 offered as part of a bona fide wellness program; 

20 (B) the individual provides prior, knowing, 

21 voluntary, and written authorization; 

22 (C) only the individual (or family member 

23 if the family member is receiving genetic serv24 ices) and the licensed health care professional or 

25 board certified genetic counselor involved in pro-
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1 viding such services receive individually identifi2 able information concerning the results of such 

3 services; and 

4 (D) any individually identifiable genetic 

5 information provided under subparagraph (C) in 

6 connection with the services provided under sub7 paragraph (A) is only available for purposes of 

8 such services and shall not be disclosed to the em9 ployment agency except in aggregate terms that 

10 do not disclose the identity of specific individ11 uals; 

12 (3) where an employment agency requests or re13 quires family medical history from the individual to 

14 comply with the certification provisions of section 103 

15 of the Family and Medical Leave Act of 1993 (29 

16 U.S.C. 2613) or such requirements under State family 

17 and medical leave laws; 

18 (4) where an employment agency purchases doc19 uments that are commercially and publicly available 

20 (including newspapers, magazines, periodicals, and 

21 books, but not including medical databases or court 

22 records) that include family medical history; or 

23 (5) where the information involved is to be used 

24 for genetic monitoring of the biological effects of toxic 

25 substances in the workplace, but only if— 
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1 (A) the employment agency provides written 

2 notice of the genetic monitoring to the indi3 vidual; 

4 (B)(i) the individual provides prior, know5 ing, voluntary, and written authorization; or 

6 (ii) the genetic monitoring is required by 

7 Federal or State law; 

8 (C) the individual is informed of individual 

9 monitoring results; 

10 (D) the monitoring is in compliance with— 

11 (i) any Federal genetic monitoring reg12 ulations, including any such regulations 

13 that may be promulgated by the Secretary 

14 of Labor pursuant to the Occupational 

15 Safety and Health Act of 1970 (29 U.S.C. 

16 651 et seq.), the Federal Mine Safety and 

17 Health Act of 1977 (30 U.S.C. 801 et seq.), 

18 or the Atomic Energy Act of 1954 (42 

19 U.S.C. 2011 et seq.); or 

20 (ii) State genetic monitoring regula21 tions, in the case of a State that is imple22 menting genetic monitoring regulations 

23 under the authority of the Occupational 

24 Safety and Health Act of 1970 (29 U.S.C. 

25 651 et seq.); and 
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1 (E) the employment agency, excluding any 

2 licensed health care professional or board cer3 tified genetic counselor that is involved in the ge4 netic monitoring program, receives the results of 

5 the monitoring only in aggregate terms that do 

6 not disclose the identity of specific individuals; 

7 (c) PRESERVATION OF PROTECTIONS.—In the case of 

8 information to which any of paragraphs (1) through (5) 

9 of subsection (b) applies, such information may not be used 

10 in violation of paragraph (1) or (2) of subsection (a) or 

11 treated or disclosed in a manner that violates section 206. 

12 SEC. 204. LABOR ORGANIZATION PRACTICES. 

13 (a) USE OF GENETIC INFORMATION.—It shall be an 

14 unlawful employment practice for a labor organization— 

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

16 of the organization, or otherwise to discriminate 

17 against, any member because of genetic information 

18 with respect to the member (or information about a 

19 request for or the receipt of genetic services by such 

20 member or family member of such member); 

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

22 the organization, or fail or refuse to refer for employ23 ment any member, in any way that would deprive or 

24 tend to deprive any member of employment opportu25 nities, or otherwise adversely affect the status of the 
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1 member as an employee, because of genetic informa2 tion with respect to the member (or information about 

3 a request for or the receipt of genetic services by such 

4 member or family member of such member); or 

5 (3) to cause or attempt to cause an employer to 

6 discriminate against a member in violation of this 

7 title. 

8 (b) ACQUISITION OF GENETIC INFORMATION.—It shall 

9 be an unlawful employment practice for a labor organiza10 tion to request, require, or purchase genetic information 

11 with respect to a member or a family member of the member 

12 (or information about a request for the receipt of genetic 

13 services by such member or a family member of such mem14 ber) except— 

15 (1) where a labor organization inadvertently re16 quests or requires family medical history of the mem17 ber or family member of the member; 

18 (2) where— 

19 (A) health or genetic services are offered by 

20 the labor organization, including such services 

21 offered as part of a bona fide wellness program; 

22 (B) the member provides prior, knowing, 

23 voluntary, and written authorization; 

24 (C) only the member (or family member if 

25 the family member is receiving genetic services) 
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1 and the licensed health care professional or board 

2 certified genetic counselor involved in providing 

3 such services receive individually identifiable in4 formation concerning the results of such services; 

5 and 

6 (D) any individually identifiable genetic 

7 information provided under subparagraph (C) in 

8 connection with the services provided under sub9 paragraph (A) is only available for purposes of 

10 such services and shall not be disclosed to the 

11 labor organization except in aggregate terms that 

12 do not disclose the identity of specific members; 

13 (3) where a labor organization requests or re14 quires family medical history from the members to 

15 comply with the certification provisions of section 103 

16 of the Family and Medical Leave Act of 1993 (29 

17 U.S.C. 2613) or such requirements under State family 

18 and medical leave laws; 

19 (4) where a labor organization purchases docu20 ments that are commercially and publicly available 

21 (including newspapers, magazines, periodicals, and 

22 books, but not including medical databases or court 

23 records) that include family medical history; or 
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1 (5) where the information involved is to be used 

2 for genetic monitoring of the biological effects of toxic 

3 substances in the workplace, but only if— 

4 (A) the labor organization provides written 

5 notice of the genetic monitoring to the member; 

6 (B)(i) the member provides prior, knowing, 

7 voluntary, and written authorization; or 

8 (ii) the genetic monitoring is required by 

9 Federal or State law; 

10 (C) the member is informed of individual 

11 monitoring results; 

12 (D) the monitoring is in compliance with— 

13 (i) any Federal genetic monitoring reg14 ulations, including any such regulations 

15 that may be promulgated by the Secretary 

16 of Labor pursuant to the Occupational 

17 Safety and Health Act of 1970 (29 U.S.C. 

18 651 et seq.), the Federal Mine Safety and 

19 Health Act of 1977 (30 U.S.C. 801 et seq.), 

20 or the Atomic Energy Act of 1954 (42 

21 U.S.C. 2011 et seq.); or 

22 (ii) State genetic monitoring regula23 tions, in the case of a State that is imple24 menting genetic monitoring regulations 

25 under the authority of the Occupational 
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1 Safety and Health Act of 1970 (29 U.S.C. 

2 651 et seq.); and 

3 (E) the labor organization, excluding any 

4 licensed health care professional or board cer5 tified genetic counselor that is involved in the ge6 netic monitoring program, receives the results of 

7 the monitoring only in aggregate terms that do 

8 not disclose the identity of specific members; 

9 (c) PRESERVATION OF PROTECTIONS.—In the case of 

10 information to which any of paragraphs (1) through (5) 

11 of subsection (b) applies, such information may not be used 

12 in violation of paragraph (1) or (2) of subsection (a) or 

13 treated or disclosed in a manner that violates section 206. 

14 SEC. 205. TRAINING PROGRAMS. 

15 (a) USE OF GENETIC INFORMATION.—It shall be an 

16 unlawful employment practice for any employer, labor or17 ganization, or joint labor-management committee control18 ling apprenticeship or other training or retraining, includ19 ing on-the-job training programs— 

20 (1) to discriminate against any individual be21 cause of genetic information with respect to the indi22 vidual (or information about a request for or the re23 ceipt of genetic services by such individual or a fam24 ily member of such individual) in admission to, or 
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1 employment in, any program established to provide 

2 apprenticeship or other training or retraining; 

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

4 for or participants in such apprenticeship or other 

5 training or retraining, or fail or refuse to refer for 

6 employment any individual, in any way that would 

7 deprive or tend to deprive any individual of employ8 ment opportunities, or otherwise adversely affect the 

9 status of the individual as an employee, because of ge10 netic information with respect to the individual (or 

11 information about a request for or receipt of genetic 

12 services by such individual or family member of such 

13 individual); or 

14 (3) to cause or attempt to cause an employer to 

15 discriminate against an applicant for or a partici16 pant in such apprenticeship or other training or re17 training in violation of this title. 

18 (b) ACQUISITION OF GENETIC INFORMATION.—It shall 

19 be an unlawful employment practice for an employer, labor 

20 organization, or joint labor-management committee de21 scribed in subsection (a) to request, require, or purchase ge22 netic information with respect to an individual or a family 

23 member of the individual (or information about a request 

24 for the receipt of genetic services by such individual or a 

25 family member of such individual) except— 
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1 (1) where the employer, labor organization, or 

2 joint labor-management committee inadvertently re3 quests or requires family medical history of the indi4 vidual or family member of the individual; 

5 (2) where— 

6 (A) health or genetic services are offered by 

7 the employer, labor organization, or joint labor8 management committee, including such services 

9 offered as part of a bona fide wellness program; 

10 (B) the individual provides prior, knowing, 

11 voluntary, and written authorization; 

12 (C) only the individual (or family member 

13 if the family member is receiving genetic serv14 ices) and the licensed health care professional or 

15 board certified genetic counselor involved in pro16 viding such services receive individually identifi17 able information concerning the results of such 

18 services; 

19 (D) any individually identifiable genetic 

20 information provided under subparagraph (C) in 

21 connection with the services provided under sub22 paragraph (A) is only available for purposes of 

23 such services and shall not be disclosed to the em24 ployer, labor organization, or joint labor-man25 agement committee except in aggregate terms 
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1 that do not disclose the identity of specific indi2 viduals; 

3 (3) where the employer, labor organization, or 

4 joint labor-management committee requests or re5 quires family medical history from the individual to 

6 comply with the certification provisions of section 103 

7 of the Family and Medical Leave Act of 1993 (29 

8 U.S.C. 2613) or such requirements under State family 

9 and medical leave laws; 

10 (4) where the employer, labor organization, or 

11 joint labor-management committee purchases docu12 ments that are commercially and publicly available 

13 (including newspapers, magazines, periodicals, and 

14 books, but not including medical databases or court 

15 records) that include family medical history; or 

16 (5) where the information involved is to be used 

17 for genetic monitoring of the biological effects of toxic 

18 substances in the workplace, but only if— 

19 (A) the employer, labor organization, or 

20 joint labor-management committee provides 

21 written notice of the genetic monitoring to the 

22 individual; 

23 (B)(i) the individual provides prior, know24 ing, voluntary, and written authorization; or 
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1 (ii) the genetic monitoring is required by 

2 Federal or State law; 

3 (C) the individual is informed of individual 

4 monitoring results; 

5 (D) the monitoring is in compliance with— 

6 (i) any Federal genetic monitoring reg7 ulations, including any such regulations 

8 that may be promulgated by the Secretary 

9 of Labor pursuant to the Occupational 

10 Safety and Health Act of 1970 (29 U.S.C. 

11 651 et seq.), the Federal Mine Safety and 

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

13 or the Atomic Energy Act of 1954 (42 

14 U.S.C. 2011 et seq.); or 

15 (ii) State genetic monitoring regula16 tions, in the case of a State that is imple17 menting genetic monitoring regulations 

18 under the authority of the Occupational 

19 Safety and Health Act of 1970 (29 U.S.C. 

20 651 et seq.); and 

21 (E) the employer, labor organization, or 

22 joint labor-management committee, excluding 

23 any licensed health care professional or board 

24 certified genetic counselor that is involved in the 

25 genetic monitoring program, receives the results 
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1 of the monitoring only in aggregate terms that 

2 do not disclose the identity of specific individ3 uals; 

4 (c) PRESERVATION OF PROTECTIONS.—In the case of 

5 information to which any of paragraphs (1) through (5) 

6 of subsection (b) applies, such information may not be used 

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

8 treated or disclosed in a manner that violates section 206. 

9 SEC. 206. CONFIDENTIALITY OF GENETIC INFORMATION. 

10 (a) TREATMENT OF INFORMATION AS PART OF CON11 FIDENTIAL MEDICAL RECORD.—If an employer, employ12 ment agency, labor organization, or joint labor-manage13 ment committee possesses genetic information about an em14 ployee or member (or information about a request for or 

15 receipt of genetic services by such employee or member or 

16 family member of such employee or member), such informa17 tion shall be maintained on separate forms and in separate 

18 medical files and be treated as a confidential medical record 

19 of the employee or member. 

20 (b) LIMITATION ON DISCLOSURE.—An employer, em21 ployment agency, labor organization, or joint labor-man22 agement committee shall not disclose genetic information 

23 concerning an employee or member (or information about 

24 a request for or receipt of genetic services by such employee 
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1 or member or family member of such employee or member) 

2 except— 

3 (1) to the employee (or family member if the 

4 family member is receiving the genetic services) or 

5 member of a labor organization at the request of the 

6 employee or member of such organization; 

7 (2) to an occupational or other health researcher 

8 if the research is conducted in compliance with the 

9 regulations and protections provided for under part 

10 46 of title 45, Code of Federal Regulations; 

11 (3) in response to an order of a court, except 

12 that— 

13 (A) the employer, employment agency, labor 

14 organization, or joint labor-management com15 mittee may disclose only the genetic information 

16 expressly authorized by such order; and 

17 (B) if the court order was secured without 

18 the knowledge of the employee or member to 

19 whom the information refers, the employer, em20 ployment agency, labor organization, or joint 

21 labor-management committee shall provide the 

22 employee or member with adequate notice to 

23 challenge the court order; 
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1 (4) to government officials who are investigating 

2 compliance with this title if the information is rel3 evant to the investigation; or 

4 (5) to the extent that such disclosure is made in 

5 connection with the employee’s compliance with the 

6 certification provisions of section 103 of the Family 

7 and Medical Leave Act of 1993 (29 U.S.C. 2613) or 

8 such requirements under State family and medical 

9 leave laws. 

10 SEC. 207. REMEDIES AND ENFORCEMENT. 

11 (a) EMPLOYEES COVERED BY TITLE VII OF THE CIVIL

12 RIGHTS ACT OF 1964.— 

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

14 procedures provided in sections 705, 706, 707, 709, 

15 710, and 711 of the Civil Rights Act of 1964 (42 

16 U.S.C. 2000e–4 et seq.) to the Commission, the Attor17 ney General, or any person, alleging a violation of 

18 title VII of that Act (42 U.S.C. 2000e et seq.) shall 

19 be the powers, remedies, and procedures this title pro20 vides to the Commission, the Attorney General, or 

21 any person, respectively, alleging an unlawful em22 ployment practice in violation of this title against an 

23 employee described in section 201(2)(A)(i), except as 

24 provided in paragraphs (2) and (3). 
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1 (2) COSTS AND FEES.—The powers, remedies, 

2 and procedures provided in subsections (b) and (c) of 

3 section 722 of the Revised Statutes (42 U.S.C. 1988), 

4 shall be powers, remedies, and procedures this title 

5 provides to the Commission, the Attorney General, or 

6 any person, alleging such a practice. 

7 (3) DAMAGES.—The powers, remedies, and pro8 cedures provided in section 1977A of the Revised 

9 Statutes (42 U.S.C. 1981a), including the limitations 

10 contained in subsection (b)(3) of such section 1977A, 

11 shall be powers, remedies, and procedures this title 

12 provides to the Commission, the Attorney General, or 

13 any person, alleging such a practice (not an employ14 ment practice specifically excluded from coverage 

15 under section 1977A(a)(1) of the Revised Statutes). 

16 (b) EMPLOYEES COVERED BY GOVERNMENT EM17 PLOYEE RIGHTS ACT OF 1991.— 

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

19 procedures provided in sections 302 and 304 of the 

20 Government Employee Rights Act of 1991 (42 U.S.C. 

21 2000e–16b, 2000e–16c) to the Commission, or any 

22 person, alleging a violation of section 302(a)(1) of 

23 that Act (42 U.S.C. 2000e–16b(a)(1)) shall be the 

24 powers, remedies, and procedures this title provides to 

25 the Commission, or any person, respectively, alleging 
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1 an unlawful employment practice in violation of this 

2 title against an employee described in section 

3 201(2)(A)(ii), except as provided in paragraphs (2) 

4 and (3). 

5 (2) COSTS AND FEES.—The powers, remedies, 

6 and procedures provided in subsections (b) and (c) of 

7 section 722 of the Revised Statutes (42 U.S.C. 1988), 

8 shall be powers, remedies, and procedures this title 

9 provides to the Commission, or any person, alleging 

10 such a practice. 

11 (3) DAMAGES.—The powers, remedies, and pro12 cedures provided in section 1977A of the Revised 

13 Statutes (42 U.S.C. 1981a), including the limitations 

14 contained in subsection (b)(3) of such section 1977A, 

15 shall be powers, remedies, and procedures this title 

16 provides to the Commission, or any person, alleging 

17 such a practice (not an employment practice specifi18 cally excluded from coverage under section 

19 1977A(a)(1) of the Revised Statutes). 

20 (c) EMPLOYEES COVERED BY CONGRESSIONAL AC21 COUNTABILITY ACT OF 1995.— 

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

23 procedures provided in the Congressional Account24 ability Act of 1995 (2 U.S.C. 1301 et seq.) to the 

25 Board (as defined in section 101 of that Act (2 U.S.C. 
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1 1301)), or any person, alleging a violation of section 

2 201(a)(1) of that Act (42 U.S.C. 1311(a)(1)) shall be 

3 the powers, remedies, and procedures this title pro4 vides to that Board, or any person, alleging an un5 lawful employment practice in violation of this title 

6 against an employee described in section 

7 201(2)(A)(iii), except as provided in paragraphs (2) 

8 and (3). 

9 (2) COSTS AND FEES.—The powers, remedies, 

10 and procedures provided in subsections (b) and (c) of 

11 section 722 of the Revised Statutes (42 U.S.C. 1988), 

12 shall be powers, remedies, and procedures this title 

13 provides to that Board, or any person, alleging such 

14 a practice. 

15 (3) DAMAGES.—The powers, remedies, and pro16 cedures provided in section 1977A of the Revised 

17 Statutes (42 U.S.C. 1981a), including the limitations 

18 contained in subsection (b)(3) of such section 1977A, 

19 shall be powers, remedies, and procedures this title 

20 provides to that Board, or any person, alleging such 

21 a practice (not an employment practice specifically 

22 excluded from coverage under section 1977A(a)(1) of 

23 the Revised Statutes). 

24 (4) OTHER APPLICABLE PROVISIONS.—With re25 spect to a claim alleging a practice described in para-
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1 graph (1), title III of the Congressional Account2 ability Act of 1995 (2 U.S.C. 1381 et seq.) shall apply 

3 in the same manner as such title applies with respect 

4 to a claim alleging a violation of section 201(a)(1) of 

5 such Act (2 U.S.C. 1311(a)(1)). 

6 (d) EMPLOYEES COVERED BY CHAPTER 5 OF TITLE

7 3, UNITED STATES CODE.— 

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

9 procedures provided in chapter 5 of title 3, United 

10 States Code, to the President, the Commission, the 

11 Merit Systems Protection Board, or any person, alleg12 ing a violation of section 411(a)(1) of that title, shall 

13 be the powers, remedies, and procedures this title pro14 vides to the President, the Commission, such Board, 

15 or any person, respectively, alleging an unlawful em16 ployment practice in violation of this title against an 

17 employee described in section 201(2)(A)(iv), except as 

18 provided in paragraphs (2) and (3). 

19 (2) COSTS AND FEES.—The powers, remedies, 

20 and procedures provided in subsections (b) and (c) of 

21 section 722 of the Revised Statutes (42 U.S.C. 1988), 

22 shall be powers, remedies, and procedures this title 

23 provides to the President, the Commission, such 

24 Board, or any person, alleging such a practice. 
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1 (3) DAMAGES.—The powers, remedies, and pro2 cedures provided in section 1977A of the Revised 

3 Statutes (42 U.S.C. 1981a), including the limitations 

4 contained in subsection (b)(3) of such section 1977A, 

5 shall be powers, remedies, and procedures this title 

6 provides to the President, the Commission, such 

7 Board, or any person, alleging such a practice (not 

8 an employment practice specifically excluded from 

9 coverage under section 1977A(a)(1) of the Revised 

10 Statutes). 

11 (e) EMPLOYEES COVERED BY SECTION 717 OF THE

12 CIVIL RIGHTS ACT OF 1964.— 

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

14 procedures provided in section 717 of the Civil Rights 

15 Act of 1964 (42 U.S.C. 2000e–16) to the Commission, 

16 the Attorney General, the Librarian of Congress, or 

17 any person, alleging a violation of that section shall 

18 be the powers, remedies, and procedures this title pro19 vides to the Commission, the Attorney General, the 

20 Librarian of Congress, or any person, respectively, al21 leging an unlawful employment practice in violation 

22 of this title against an employee or applicant de23 scribed in section 201(2)(A)(v), except as provided in 

24 paragraphs (2) and (3). 
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1 (2) COSTS AND FEES.—The powers, remedies, 

2 and procedures provided in subsections (b) and (c) of 

3 section 722 of the Revised Statutes (42 U.S.C. 1988), 

4 shall be powers, remedies, and procedures this title 

5 provides to the Commission, the Attorney General, the 

6 Librarian of Congress, or any person, alleging such a 

7 practice. 

8 (3) DAMAGES.—The powers, remedies, and pro9 cedures provided in section 1977A of the Revised 

10 Statutes (42 U.S.C. 1981a), including the limitations 

11 contained in subsection (b)(3) of such section 1977A, 

12 shall be powers, remedies, and procedures this title 

13 provides to the Commission, the Attorney General, the 

14 Librarian of Congress, or any person, alleging such a 

15 practice (not an employment practice specifically ex16 cluded from coverage under section 1977A(a)(1) of the 

17 Revised Statutes). 

18 (f) DEFINITION.—In this section, the term ‘‘Commis19 sion’’ means the Equal Employment Opportunity Commis20 sion. 

21 SEC. 208. DISPARATE IMPACT. 

22 (a) GENERAL RULE.—Notwithstanding any other pro23 vision of this Act, ‘‘disparate impact’’, as that term is used 

24 in section 703(k) of the Civil Rights Act of 1964 (42 U.S.C. 
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1 2000e–d(k)), on the basis of genetic information does not 

2 establish a cause of action under this Act. 

3 (b) COMMISSION.—On the date that is 6 years after 

4 the date of enactment of this Act, there shall be established 

5 a commission, to be known as the Genetic Nondiscrimina6 tion Study Commission (referred to in this section as the 

7 ‘‘Commission’’) to review the developing science of genetics 

8 and to make recommendations to Congress regarding wheth9 er to provide a disparate impact cause of action under this 

10 Act. 

11 (c) MEMBERSHIP.— 

12 (1) IN GENERAL.—The Commission shall be com13 posed of 8 members, of which— 

14 (A) 1 member shall be appointed by the Ma15 jority Leader of the Senate; 

16 (B) 1 member shall be appointed by the Mi17 nority Leader of the Senate; 

18 (C) 1 member shall be appointed by the 

19 Chairman of the Committee on Health, Edu20 cation, Labor, and Pensions of the Senate; 

21 (D) 1 member shall be appointed by the 

22 ranking minority member of the Committee on 

23 Health, Education, Labor, and Pensions of the 

24 Senate; 
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1 (E) 1 member shall be appointed by the 

2 Speaker of the House of Representatives; 

3 (F) 1 member shall be appointed by the Mi4 nority Leader of the House of Representatives; 

5 (G) 1 member shall be appointed by the 

6 Chairman of the Committee on Education and 

7 the Workforce of the House of Representatives; 

8 and 

9 (H) 1 member shall be appointed by the 

10 ranking minority member of the Committee on 

11 Education and the Workforce of the House of 

12 Representatives. 

13 (2) COMPENSATION AND EXPENSES.—The mem14 bers of the Commission shall not receive compensation 

15 for the performance of services for the Commission, 

16 but shall be allowed travel expenses, including per 

17 diem in lieu of subsistence, at rates authorized for 

18 employees of agencies under subchapter I of chapter 

19 57 of title 5, United States Code, while away from 

20 their homes or regular places of business in the per21 formance of services for the Commission. 

22 (d) ADMINISTRATIVE PROVISIONS.— 

23 (1) LOCATION.—The Commission shall be located 

24 in a facility maintained by the Equal Employment 

25 Opportunity Commission. 
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1 (2) DETAIL OF GOVERNMENT EMPLOYEES.—Any 

2 Federal Government employee may be detailed to the 

3 Commission without reimbursement, and such detail 

4 shall be without interruption or loss of civil service 

5 status or privilege. 

6 (3) INFORMATION FROM FEDERAL AGENCIES.—

7 The Commission may secure directly from any Fed8 eral department or agency such information as the 

9 Commission considers necessary to carry out the pro10 visions of this section. Upon request of the Commis11 sion, the head of such department or agency shall fur12 nish such information to the Commission. 

13 (4) HEARINGS.—The Commission may hold such 

14 hearings, sit and act at such times and places, take 

15 such testimony, and receive such evidence as the Com16 mission considers advisable to carry out the objectives 

17 of this section, except that, to the extent possible, the 

18 Commission shall use existing data and research. 

19 (5) POSTAL SERVICES.—The Commission may 

20 use the United States mails in the same manner and 

21 under the same conditions as other departments and 

22 agencies of the Federal Government. 

23 (e) REPORT.—Not later than 1 year after all of the 

24 members are appointed to the Commission under subsection 

25 (c)(1), the Commission shall submit to Congress a report 
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1 that summarizes the findings of the Commission and makes 

2 such recommendations for legislation as are consistent with 

3 this Act. 

4 (f) AUTHORIZATION OF APPROPRIATIONS.—There are 

5 authorized to be appropriated to the Equal Employment 

6 Opportunity Commission such sums as may be necessary 

7 to carry out this section. 

8 SEC. 209. CONSTRUCTION. 

9 Nothing in this title shall be construed to— 

10 (1) limit the rights or protections of an indi11 vidual under the Americans with Disabilities Act of 

12 1990 (42 U.S.C. 12101 et seq.), including coverage af13 forded to individuals under section 102 of such Act 

14 (42 U.S.C. 12112), or under the Rehabilitation Act of 

15 1973 (29 U.S.C. 701 et seq.); 

16 (2)(A) limit the rights or protections of an indi17 vidual to bring an action under this title against an 

18 employer, employment agency, labor organization, or 

19 joint labor-management committee for a violation of 

20 this title; or 

21 (B) establish a violation under this title for an 

22 employer, employment agency, labor organization, or 

23 joint labor-management committee of a provision of 

24 the amendments made by title I; 
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1 (3) limit the rights or protections of an indi2 vidual under any other Federal or State statute that 

3 provides equal or greater protection to an individual 

4 than the rights or protections provided for under this 

5 title; 

6 (4) apply to the Armed Forces Repository of 

7 Specimen Samples for the Identification of Remains; 

8 (5) limit or expand the protections, rights, or ob9 ligations of employees or employers under applicable 

10 workers’ compensation laws; 

11 (6) limit the authority of a Federal department 

12 or agency to conduct or sponsor occupational or other 

13 health research that is conducted in compliance with 

14 the regulations contained in part 46 of title 45, Code 

15 of Federal Regulations (or any corresponding or simi16 lar regulation or rule); and 

17 (7) limit the statutory or regulatory authority of 

18 the Occupational Safety and Health Administration 

19 or the Mine Safety and Health Administration to 

20 promulgate or enforce workplace safety and health 

21 laws and regulations. 

22 SEC. 210. MEDICAL INFORMATION THAT IS NOT GENETIC 

23 INFORMATION. 

24 An employer, employment agency, labor organization, 

25 or joint labor-management committee shall not be consid-
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1 ered to be in violation of this title based on the use, acquisi2 tion, or disclosure of medical information that is not genetic 

3 information about a manifested disease, disorder, or patho4 logical condition of an employee or member, including a 

5 manifested disease, disorder, or pathological condition that 

6 has or may have a genetic basis. 

7 SEC. 211. REGULATIONS. 

8 Not later than 1 year after the date of enactment of 

9 this title, the Commission shall issue final regulations in 

10 an accessible format to carry out this title. 

11 SEC. 212. AUTHORIZATION OF APPROPRIATIONS. 

12 There are authorized to be appropriated such sums as 

13 may be necessary to carry out this title (except for section 

14 208). 

15 SEC. 213. EFFECTIVE DATE. 

16 This title takes effect on the date that is 18 months 

17 after the date of enactment of this Act. 

18 TITLE III—MISCELLANEOUS 

19 PROVISION 

20 SEC. 301. SEVERABILITY. 

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

22 this Act, or the application of such provision or amendment 

23 to any person or circumstance is held to be unconstitu24 tional, the remainder of this Act, the amendments made by 
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1 this Act, and the application of such provisions to any per2 son or circumstance shall not be affected thereby. 
Calendar No. 3 

109TH CONGRESS 

1ST SESSION S. 306 

A BILL

To prohibit discrimination on the basis of genetic 

employment. information with respect to health insurance and 

FEBRUARY 10, 2005 

Reported with an amendment