II 

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, and Mrs. CLINTON) introduced the following bill; which was read twice and referred to 

the Committee on Health, Education, Labor, and Pensions 

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’’. 

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

7 this Act is as follows:

Sec. 1. Short title; table of contents. 

Sec. 2. Findings. 

TITLE I—GENETIC NONDISCRIMINATION IN HEALTH INSURANCE 
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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.

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 

5 new opportunities for medical progress. New knowl6 edge about the genetic basis of illness will allow for 

7 earlier detection of illnesses, often before symptoms 

8 have begun. Genetic testing can allow individuals to 

9 take steps to reduce the likelihood that they will con10 tract a particular disorder. New knowledge about ge11 netics may allow for the development of better thera12 pies that are more effective against disease or have 
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1 fewer side effects than current treatments. These 

2 advances give rise to the potential misuse of genetic 

3 information to discriminate in health insurance and 

4 employment. 

5 (2) The early science of genetics became the 

6 basis of State laws that provided for the sterilization 

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

8 as mental retardation, mental disease, epilepsy, 

9 blindness, and hearing loss, among other conditions. 

10 The first sterilization law was enacted in the State 

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

12 adopted sterilization laws to ‘‘correct’’ apparent ge13 netic traits or tendencies. Many of these State laws 

14 have since been repealed, and many have been modi15 fied to include essential constitutional requirements 

16 of due process and equal protection. However, the 

17 current explosion in the science of genetics, and the 

18 history of sterilization laws by the States based on 

19 early genetic science, compels Congressional action 

20 in this area. 

21 (3) Although genes are facially neutral markers, 

22 many genetic conditions and disorders are associated 

23 with particular racial and ethnic groups and gender. 

24 Because some genetic traits are most prevalent in 

25 particular groups, members of a particular group 
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1 may be stigmatized or discriminated against as a re2 sult of that genetic information. This form of dis3 crimination was evident in the 1970s, which saw the 

4 advent of programs to screen and identify carriers of 

5 sickle cell anemia, a disease which afflicts African6 Americans. Once again, State legislatures began to 

7 enact discriminatory laws in the area, and in the 

8 early 1970s began mandating genetic screening of 

9 all African Americans for sickle cell anemia, leading 

10 to discrimination and unnecessary fear. To alleviate 

11 some of this stigma, Congress in 1972 passed the 

12 National Sickle Cell Anemia Control Act, which 

13 withholds Federal funding from States unless sickle 

14 cell testing is voluntary. 

15 (4) Congress has been informed of examples of 

16 genetic discrimination in the workplace. These in17 clude the use of pre-employment genetic screening at 

18 Lawrence Berkeley Laboratory, which led to a court 

19 decision in favor of the employees in that case Nor20 man-Bloodsaw v. Lawrence Berkeley Laboratory 

21 (135 F.3d 1260, 1269 (9th Cir. 1998)). Congress 

22 clearly has a compelling public interest in relieving 

23 the fear of discrimination and in prohibiting its ac24 tual practice in employment and health insurance. 
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1 (5) Federal law addressing genetic discrimina2 tion in health insurance and employment is incom3 plete in both the scope and depth of its protections. 

4 Moreover, while many States have enacted some type 

5 of genetic non-discrimination law, these laws vary 

6 widely with respect to their approach, application, 

7 and level of protection. Congress has collected sub8 stantial evidence that the American public and the 

9 medical community find the existing patchwork of 

10 State and Federal laws to be confusing and inad11 equate to protect them from discrimination. There12 fore Federal legislation establishing a national and 

13 uniform basic standard is necessary to fully protect 

14 the public from discrimination and allay their con15 cerns about the potential for discrimination, thereby 

16 allowing individuals to take advantage of genetic 

17 testing, technologies, research, and new therapies. 

18 TITLE I—GENETIC NON19 DISCRIMINATION IN HEALTH 

20 INSURANCE 

21 SEC. 101. AMENDMENTS TO EMPLOYEE RETIREMENT IN22 COME SECURITY ACT OF 1974. 

23 (a) PROHIBITION OF HEALTH DISCRIMINATION ON

24 THE BASIS OF GENETIC INFORMATION OR GENETIC

25 SERVICES.— 
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1 (1) NO ENROLLMENT RESTRICTION FOR GE2 NETIC SERVICES.—Section 702(a)(1)(F) of the Em3 ployee Retirement Income Security Act of 1974 (29 

4 U.S.C. 1182(a)(1)(F)) is amended by inserting be5 fore the period the following: ‘‘(including informa6 tion about a request for or receipt of genetic services 

7 by an individual or family member of such indi8 vidual)’’. 

9 (2) NO DISCRIMINATION IN GROUP PREMIUMS

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

11 of the Employee Retirement Income Security Act of 

12 1974 (29 U.S.C. 1182(b)) is amended— 

13 (A) in paragraph (2)(A), by inserting be14 fore the semicolon the following: ‘‘except as pro15 vided in paragraph (3)’’; and 

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

17 ‘‘(3) NO DISCRIMINATION IN GROUP PREMIUMS

18 BASED ON GENETIC INFORMATION.—For purposes 

19 of this section, a group health plan, or a health in20 surance issuer offering group health insurance cov21 erage in connection with a group health plan, shall 

22 not adjust premium or contribution amounts for a 

23 group on the basis of genetic information concerning 

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

25 individual (including information about a request for 
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1 or receipt of genetic services by an individual or 

2 family member of such individual).’’. 

3 (b) LIMITATIONS ON GENETIC TESTING.—Section 

4 702 of the Employee Retirement Income Security Act of 

5 1974 (29 U.S.C. 1182) is amended by adding at the end 

6 the following: 

7 ‘‘(c) GENETIC TESTING.— 

8 ‘‘(1) LIMITATION ON REQUESTING OR REQUIR9 ING GENETIC TESTING.—A group health plan, or a 

10 health insurance issuer offering health insurance 

11 coverage in connection with a group health plan, 

12 shall not request or require an individual or a family 

13 member of such individual to undergo a genetic test. 

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

15 this part shall be construed to— 

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

17 professional who is providing health care serv18 ices with respect to an individual to request 

19 that such individual or a family member of such 

20 individual undergo a genetic test; 

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

22 professional who is employed by or affiliated 

23 with a group health plan or a health insurance 

24 issuer and who is providing health care services 

25 to an individual as part of a bona fide wellness 
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1 program to notify such individual of the avail2 ability of a genetic test or to provide informa3 tion to such individual regarding such genetic 

4 test; or 

5 ‘‘(C) authorize or permit a health care pro6 fessional to require that an individual undergo 

7 a genetic test. 

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

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

10 group health plans and health insurance issuers without 

11 regard to section 732(a).’’. 

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

13 the Employee Retirement Income Security Act of 1974 

14 (29 U.S.C. 1132) is amended by adding at the end the 

15 following: 

16 ‘‘(n) ENFORCEMENT OF GENETIC NONDISCRIMINA17 TION REQUIREMENTS.— 

18 ‘‘(1) INJUNCTIVE RELIEF FOR IRREPARABLE

19 HARM.—With respect to any violation of subsection 

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

21 or beneficiary may seek relief under subsection 

22 502(a)(1)(B) prior to the exhaustion of available ad23 ministrative remedies under section 503 if it is dem24 onstrated to the court, by a preponderance of the 

25 evidence, that the exhaustion of such remedies would 
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1 cause irreparable harm to the health of the partici2 pant or beneficiary. Any determinations that already 

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

4 that are made in such case while an action under 

5 this paragraph is pending, shall be given due consid6 eration by the court in any action under this sub7 section in such case. 

8 ‘‘(2) EQUITABLE RELIEF FOR GENETIC NON9 DISCRIMINATION.— 

10 ‘‘(A) REINSTATEMENT OF BENEFITS

11 WHERE EQUITABLE RELIEF HAS BEEN AWARD12 ED.—The recovery of benefits by a participant 

13 or beneficiary under a civil action under this 

14 section may include an administrative penalty 

15 under subparagraph (B) and the retroactive re16 instatement of coverage under the plan involved 

17 to the date on which the participant or bene18 ficiary was denied eligibility for coverage if— 

19 ‘‘(i) the civil action was commenced 

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

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

22 such civil action was based constitutes a 

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

24 (c) of section 702. 

25 ‘‘(B) ADMINISTRATIVE PENALTY.— 
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1 ‘‘(i) IN GENERAL.—An administrator 

2 who fails to comply with the requirements 

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

4 section 702 with respect to a participant or 

5 beneficiary may, in an action commenced 

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

7 liable in the discretion of the court, for a 

8 penalty in the amount not more than $100 

9 for each day in the noncompliance period. 

10 ‘‘(ii) NONCOMPLIANCE PERIOD.—For 

11 purposes of clause (i), the term ‘non12 compliance period’ means the period— 

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

14 failure described in clause (i) occurs; 

15 and 

16 ‘‘(II) ending on the date that 

17 such failure is corrected. 

18 ‘‘(iii) PAYMENT TO PARTICIPANT OR

19 BENEFICIARY.—A penalty collected under 

20 this subparagraph shall be paid to the par21 ticipant or beneficiary involved. 

22 ‘‘(3) SECRETARIAL ENFORCEMENT AUTHOR23 ITY.— 

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

25 the authority to impose a penalty on any failure 
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1 of a group health plan to meet the requirements 

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

3 702. 

4 ‘‘(B) AMOUNT.— 

5 ‘‘(i) IN GENERAL.—The amount of 

6 the penalty imposed by subparagraph (A) 

7 shall be $100 for each day in the non8 compliance period with respect to each in9 dividual to whom such failure relates. 

10 ‘‘(ii) NONCOMPLIANCE PERIOD.—For 

11 purposes of this paragraph, the term ‘non12 compliance period’ means, with respect to 

13 any failure, the period— 

14 ‘‘(I) beginning on the date such 

15 failure first occurs; and 

16 ‘‘(II) ending on the date such 

17 failure is corrected. 

18 ‘‘(C) MINIMUM PENALTIES WHERE FAIL19 URE DISCOVERED.—Notwithstanding clauses (i) 

20 and (ii) of subparagraph (D): 

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

22 more failures with respect to an indi23 vidual— 

24 ‘‘(I) which are not corrected be25 fore the date on which the plan re-
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1 ceives a notice from the Secretary of 

2 such violation; and 

3 ‘‘(II) which occurred or continued 

4 during the period involved; 

5 the amount of penalty imposed by subpara6 graph (A) by reason of such failures with 

7 respect to such individual shall not be less 

8 than $2,500. 

9 ‘‘(ii) HIGHER MINIMUM PENALTY

10 WHERE VIOLATIONS ARE MORE THAN DE

11 MINIMIS.—To the extent violations for 

12 which any person is liable under this para13 graph for any year are more than de mini14 mis, clause (i) shall be applied by sub15 stituting ‘$15,000’ for ‘$2,500’ with re16 spect to such person. 

17 ‘‘(D) LIMITATIONS.— 

18 ‘‘(i) PENALTY NOT TO APPLY WHERE

19 FAILURE NOT DISCOVERED EXERCISING

20 REASONABLE DILIGENCE.—No penalty 

21 shall be imposed by subparagraph (A) on 

22 any failure during any period for which it 

23 is established to the satisfaction of the 

24 Secretary that the person otherwise liable 

25 for such penalty did not know, and exer-
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1 cising reasonable diligence would not have 

2 known, that such failure existed. 

3 ‘‘(ii) PENALTY NOT TO APPLY TO

4 FAILURES CORRECTED WITHIN CERTAIN

5 PERIODS.—No penalty shall be imposed by 

6 subparagraph (A) on any failure if— 

7 ‘‘(I) such failure was due to rea8 sonable cause and not to willful ne9 glect; and 

10 ‘‘(II) such failure is corrected 

11 during the 30-day period beginning on 

12 the first date the person otherwise lia13 ble for such penalty knew, or exer14 cising reasonable diligence would have 

15 known, that such failure existed. 

16 ‘‘(iii) OVERALL LIMITATION FOR UN17 INTENTIONAL FAILURES.—In the case of 

18 failures which are due to reasonable cause 

19 and not to willful neglect, the penalty im20 posed by subparagraph (A) for failures 

21 shall not exceed the amount equal to the 

22 lesser of— 

23 ‘‘(I) 10 percent of the aggregate 

24 amount paid or incurred by the em25 ployer (or predecessor employer) dur-
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1 ing the preceding taxable year for 

2 group health plans; or 

3 ‘‘(II) $500,000. 

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

5 of a failure which is due to reasonable cause 

6 and not to willful neglect, the Secretary may 

7 waive part or all of the penalty imposed by sub8 paragraph (A) to the extent that the payment 

9 of such penalty would be excessive relative to 

10 the failure involved.’’. 

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

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

13 1191b(d)) is amended by adding at the end the following: 

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

15 member’ means with respect to an individual— 

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

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

18 including a child who is born to or placed for 

19 adoption with the individual; and 

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

21 to the individual or the spouse or child de22 scribed in subparagraph (A) or (B). 

23 ‘‘(6) GENETIC INFORMATION.— 
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1 ‘‘(A) IN GENERAL.—Except as provided in 

2 subparagraph (B), the term ‘genetic informa3 tion’ means information about— 

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

5 ‘‘(ii) the genetic tests of family mem6 bers of the individual; or 

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

8 disorder in family members of the indi9 vidual. 

10 ‘‘(B) EXCLUSIONS.—The term ‘genetic in11 formation’ shall not include information about 

12 the sex or age of an individual. 

13 ‘‘(7) GENETIC TEST.— 

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

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

16 chromosomes, proteins, or metabolites, that de17 tects genotypes, mutations, or chromosomal 

18 changes. 

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

20 test’ does not mean— 

21 ‘‘(i) an analysis of proteins or metabo22 lites that does not detect genotypes, 

23 mutations, or chromosomal changes; or 

24 ‘‘(ii) an analysis of proteins or me25 tabolites that is directly related to a mani-
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1 fested disease, disorder, or pathological 

2 condition that could reasonably be detected 

3 by a health care professional with appro4 priate training and expertise in the field of 

5 medicine involved. 

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

7 services’ means— 

8 ‘‘(A) a genetic test; 

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

10 interpreting, or assessing genetic information); 

11 or 

12 ‘‘(C) genetic education.’’. 

13 (e) REGULATIONS AND EFFECTIVE DATE.— 

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

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

16 Labor shall issue final regulations in an accessible 

17 format to carry out the amendments made by this 

18 section. 

19 (2) EFFECTIVE DATE.—The amendments made 

20 by this section shall apply with respect to group 

21 health plans for plan years beginning after the date 

22 that is 18 months after the date of enactment of 

23 this title. 
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1 SEC. 102. AMENDMENTS TO THE PUBLIC HEALTH SERVICE 

2 ACT. 

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

5 (1) PROHIBITION OF HEALTH DISCRIMINATION

6 ON THE BASIS OF GENETIC INFORMATION OR GE7 NETIC SERVICES.— 

8 (A) NO ENROLLMENT RESTRICTION FOR

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

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

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

14 services by an individual or family member of 

15 such individual)’’. 

16 (B) NO DISCRIMINATION IN GROUP PRE17 MIUMS BASED ON GENETIC INFORMATION.—

18 Section 2702(b) of the Public Health Service 

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

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

21 before the semicolon the following: ‘‘, ex22 cept as provided in paragraph (3)’’; and 

23 (ii) by adding at the end the fol24 lowing: 

25 ‘‘(3) NO DISCRIMINATION IN GROUP PREMIUMS

26 BASED ON GENETIC INFORMATION.—For purposes 
18

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1 of this section, a group health plan, or a health in2 surance issuer offering group health insurance cov3 erage in connection with a group health plan, shall 

4 not adjust premium or contribution amounts for a 

5 group on the basis of genetic information concerning 

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

7 individual (including information about a request for 

8 or receipt of genetic services by an individual or 

9 family member of such individual).’’. 

10 (2) LIMITATIONS ON GENETIC TESTING.—Sec11 tion 2702 of the Public Health Service Act (42 

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

13 the following: 

14 ‘‘(c) GENETIC TESTING.— 

15 ‘‘(1) LIMITATION ON REQUESTING OR REQUIR16 ING GENETIC TESTING.—A group health plan, or a 

17 health insurance issuer offering health insurance 

18 coverage in connection with a group health plan, 

19 shall not request or require an individual or a family 

20 member of such individual to undergo a genetic test. 

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

22 this part shall be construed to— 

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

24 professional who is providing health care serv25 ices with respect to an individual to request 
19

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1 that such individual or a family member of such 

2 individual 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 informa10 tion to such individual regarding such genetic 

11 test; or 

12 ‘‘(C) authorize or permit a health care pro13 fessional to require that an individual undergo 

14 a genetic test. 

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

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

17 group health plans and health insurance issuers without 

18 regard to section 2721(a).’’. 

19 (3) REMEDIES AND ENFORCEMENT.—Section 

20 2722(b) of the Public Health Service Act (42 U.S.C. 

21 300gg–22)(b)) is amended by adding at the end the 

22 following: 

23 ‘‘(3) ENFORCEMENT AUTHORITY RELATING TO

24 GENETIC DISCRIMINATION.— 
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1 ‘‘(A) GENERAL RULE.—In the cases de2 scribed in paragraph (1), notwithstanding the 

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

4 provisions shall apply with respect to an action 

5 under this subsection by the Secretary with re6 spect to any failure of a health insurance issuer 

7 in connection with a group health plan, to meet 

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

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

10 ‘‘(B) AMOUNT.— 

11 ‘‘(i) IN GENERAL.—The amount of 

12 the penalty imposed under this paragraph 

13 shall be $100 for each day in the non14 compliance period with respect to each in15 dividual to whom such failure relates. 

16 ‘‘(ii) NONCOMPLIANCE PERIOD.—For 

17 purposes of this paragraph, the term ‘non18 compliance period’ means, with respect to 

19 any failure, the period— 

20 ‘‘(I) beginning on the date such 

21 failure first occurs; and 

22 ‘‘(II) ending on the date such 

23 failure is corrected. 
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1 ‘‘(C) MINIMUM PENALTIES WHERE FAIL2 URE DISCOVERED.—Notwithstanding clauses (i) 

3 and (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 be8 fore the date on which the plan re9 ceives a notice from the Secretary of 

10 such violation; 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 re24 spect 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 

4 shall be imposed by subparagraph (A) on 

5 any failure during any period for which it 

6 is established to the satisfaction of the 

7 Secretary that the person otherwise liable 

8 for such penalty did not know, and exer9 cising reasonable diligence would not have 

10 known, that such failure existed. 

11 ‘‘(ii) PENALTY NOT TO APPLY TO

12 FAILURES CORRECTED WITHIN CERTAIN

13 PERIODS.—No penalty shall be imposed by 

14 subparagraph (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 

19 during the 30-day period beginning on 

20 the first date the person otherwise lia21 ble for such penalty knew, or exer22 cising reasonable diligence would have 

23 known, that such failure existed. 

24 ‘‘(iii) OVERALL LIMITATION FOR UN25 INTENTIONAL FAILURES.—In the case of 
23

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1 failures which are due to reasonable cause 

2 and not to willful neglect, the penalty im3 posed by subparagraph (A) for failures 

4 shall not exceed the amount equal to the 

5 lesser of— 

6 ‘‘(I) 10 percent of the aggregate 

7 amount paid or incurred by the em8 ployer (or predecessor employer) dur9 ing the preceding taxable year for 

10 group health plans; or 

11 ‘‘(II) $500,000. 

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

13 of a failure which is due to reasonable cause 

14 and not to willful neglect, the Secretary may 

15 waive part or all of the penalty imposed by sub16 paragraph (A) to the extent that the payment 

17 of such penalty would be excessive relative to 

18 the failure involved.’’. 

19 (4) DEFINITIONS.—Section 2791(d) of the Pub20 lic Health Service Act (42 U.S.C. 300gg–91(d)) is 

21 amended by adding at the end the following: 

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

23 member’ means with respect to an individual— 

24 ‘‘(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 de6 scribed in subparagraph (A) or (B). 

7 ‘‘(16) GENETIC INFORMATION.— 

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

9 subparagraph (B), the term ‘genetic informa10 tion’ 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 

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

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

25 changes. 
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1 ‘‘(B) EXCEPTIONS.—The term ‘genetic 

2 test’ 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 

9 condition that could reasonably be detected 

10 by a health care professional with appro11 priate training and expertise in the field of 

12 medicine 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

21 MARKET.— 

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

23 B of title XXVII of the Public Health Service Act 

24 (42 U.S.C. 300gg–51 et seq.) (relating to other re25 quirements) is amended— 
26

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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 

8 offering health insurance coverage in the individual mar9 ket may not establish rules for the eligibility (including 

10 continued eligibility) of any individual to enroll in indi11 vidual health insurance coverage based on genetic infor12 mation (including information about a request for or re13 ceipt of genetic services by an individual or family member 

14 of such individual). 

15 ‘‘(b) PROHIBITION ON GENETIC INFORMATION IN

16 SETTING PREMIUM RATES.—A health insurance issuer of17 fering health insurance coverage in the individual market 

18 shall not adjust premium or contribution amounts for an 

19 individual on the basis of genetic information concerning 

20 the individual or a family member of the individual (in21 cluding information about a request for or receipt of ge22 netic services by an individual or family member of such 

23 individual). 

24 ‘‘(c) GENETIC TESTING.— 
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1 ‘‘(1) LIMITATION ON REQUESTING OR REQUIR2 ING GENETIC TESTING.—A health insurance issuer 

3 offering health insurance coverage in the individual 

4 market shall not request or require an individual or 

5 a family member of such individual to undergo a ge6 netic test. 

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

8 this part shall be construed to— 

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

10 professional who is providing health care serv11 ices with respect to an individual to request 

12 that such individual or a family member of such 

13 individual undergo a genetic test; 

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

15 professional who is employed by or affiliated 

16 with a health insurance issuer and who is pro17 viding health care services to an individual as 

18 part of a bona fide wellness program to notify 

19 such individual of the availability of a genetic 

20 test or to provide information to such individual 

21 regarding such genetic test; or 

22 ‘‘(C) authorize or permit a health care pro23 fessional to require that an individual undergo 

24 a genetic test.’’. 
28

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1 (2) REMEDIES AND ENFORCEMENT.—Section 

2 2761(b) of the Public Health Service Act (42 U.S.C. 

3 300gg–61)(b)) is amended to read as follows: 

4 ‘‘(b) SECRETARIAL ENFORCEMENT AUTHORITY.—

5 The Secretary shall have the same authority in relation 

6 to enforcement of the provisions of this part with respect 

7 to issuers of health insurance coverage in the individual 

8 market in a State as the Secretary has under section 

9 2722(b)(2), and section 2722(b)(3) with respect to viola10 tions of genetic nondiscrimination provisions, in relation 

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

12 to issuers of health insurance coverage in the small group 

13 market in the State.’’. 

14 (c) ELIMINATION OF OPTION OF NON-FEDERAL

15 GOVERNMENTAL PLANS TO BE EXCEPTED FROM RE16 QUIREMENTS CONCERNING GENETIC INFORMATION.—

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

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

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

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

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

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

23 ‘‘(D) ELECTION NOT APPLICABLE TO RE24 QUIREMENTS CONCERNING GENETIC INFORMA25 TION.—The election described in subparagraph 
29

•S 306 IS

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

2 provisions of subsections (a)(1)(F) and (c) of 

3 section 2702 and the provisions of section 

4 2702(b) to the extent that such provisions 

5 apply to genetic information (or information 

6 about a request for or the receipt of genetic 

7 services by an individual or a family member of 

8 such individual).’’. 

9 (d) REGULATIONS AND EFFECTIVE DATE.— 

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

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

12 Labor and the Secretary of Health and Human 

13 Services (as the case may be) shall issue final regu14 lations in an accessible format to carry out the 

15 amendments made by this section. 

16 (2) EFFECTIVE DATE.—The amendments made 

17 by this section shall apply— 

18 (A) with respect to group health plans, and 

19 health insurance coverage offered in connection 

20 with group health plans, for plan years begin21 ning after the date that is 18 months after the 

22 date of enactment of this title; and 

23 (B) with respect to health insurance cov24 erage offered, sold, issued, renewed, in effect, or 

25 operated in the individual market after the date 
30

•S 306 IS

1 that is 18 months after the date of enactment 

2 of this title. 

3 SEC. 103. AMENDMENTS TO THE INTERNAL REVENUE CODE 

4 OF 1986. 

5 (a) PROHIBITION OF HEALTH DISCRIMINATION ON

6 THE BASIS OF GENETIC INFORMATION OR GENETIC

7 SERVICES.— 

8 (1) NO ENROLLMENT RESTRICTION FOR GE9 NETIC SERVICES.—Section 9802(a)(1)(F) of the In10 ternal Revenue Code of 1986 is amended by insert11 ing before the period the following: ‘‘(including in12 formation about a request for or receipt of genetic 

13 services by an individual or family member of such 

14 individual)’’. 

15 (2) NO DISCRIMINATION IN GROUP PREMIUMS

16 BASED ON GENETIC INFORMATION.—Section 

17 9802(b) of the Internal Revenue Code of 1986 is 

18 amended— 

19 (A) in paragraph (2)(A), by inserting be20 fore the semicolon the following: ‘‘, except as 

21 provided in paragraph (3)’’; and 

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

23 ‘‘(3) NO DISCRIMINATION IN GROUP PREMIUMS

24 BASED ON GENETIC INFORMATION.—For purposes 

25 of this section, a group health plan shall not adjust 
31

•S 306 IS

1 premium or contribution amounts for a group on the 

2 basis of genetic information concerning an individual 

3 in the group or a family member of the individual 

4 (including information about a request for or receipt 

5 of genetic services by an individual or family mem6 ber of such individual).’’. 

7 (b) LIMITATIONS ON GENETIC TESTING.—Section 

8 9802 of the Internal Revenue Code of 1986 is amended 

9 by adding at the end the following: 

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

11 ‘‘(1) LIMITATION ON REQUESTING OR REQUIR12 ING GENETIC TESTING.—A group health plan shall 

13 not request or require an individual or a family 

14 member of such individual to undergo a genetic test. 

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

16 this part shall be construed to— 

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

18 professional who is providing health care serv19 ices with respect to an individual to request 

20 that such individual or a family member of such 

21 individual undergo a genetic test; 

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

23 professional who is employed by or affiliated 

24 with a group health plan and who is providing 

25 health care services to an individual as part of 
32

•S 306 IS

1 a bona fide wellness program to notify such in2 dividual of the availability of a genetic test or 

3 to provide information to such individual re4 garding such genetic test; or 

5 ‘‘(C) authorize or permit a health care pro6 fessional to require that an individual undergo 

7 a genetic test. 

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

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

10 group health plans and health insurance issuers without 

11 regard to section 9831(a)(2).’’. 

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

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

14 the following: 

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

16 member’ means with respect to an individual— 

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

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

19 including a child who is born to or placed for 

20 adoption with the individual; and 

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

22 to the individual or the spouse or child de23 scribed in subparagraph (A) or (B). 

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

25 services’ means— 
33

•S 306 IS

1 ‘‘(A) a genetic test; 

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

3 interpreting, or assessing genetic information); 

4 or 

5 ‘‘(C) genetic education. 

6 ‘‘(8) GENETIC INFORMATION.— 

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

8 subparagraph (B), the term ‘genetic informa9 tion’ means information about— 

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

11 ‘‘(ii) the genetic tests of family mem12 bers of the individual; or 

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

14 disorder in family members of the indi15 vidual. 

16 ‘‘(B) EXCLUSIONS.—The term ‘genetic in17 formation’ shall not include information about 

18 the sex or age of an individual. 

19 ‘‘(9) GENETIC TEST.— 

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

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

22 chromosomes, proteins, or metabolites, that de23 tects genotypes, mutations, or chromosomal 

24 changes. 
34

•S 306 IS

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

2 test’ 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 

9 condition that could reasonably be detected 

10 by a health care professional with appro11 priate training and expertise in the field of 

12 medicine involved.’’. 

13 (d) REGULATIONS AND EFFECTIVE DATE.— 

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

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

16 the Treasury shall issue final regulations in an ac17 cessible format to carry out the amendments made 

18 by this section. 

19 (2) EFFECTIVE DATE.—The amendments made 

20 by this section shall apply with respect to group 

21 health plans for plan years beginning after the date 

22 that is 18 months after the date of enactment of 

23 this title. 
35

•S 306 IS

1 SEC. 104. AMENDMENTS TO TITLE XVIII OF THE SOCIAL SE2 CURITY ACT RELATING TO MEDIGAP. 

3 (a) NONDISCRIMINATION.— 

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

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

6 amended by adding at the end the following: 

7 ‘‘(E)(i) An issuer of a medicare supple8 mental policy shall not deny or condition the 

9 issuance or effectiveness of the policy, and shall 

10 not discriminate in the pricing of the policy (in11 cluding the adjustment of premium rates) of an 

12 eligible individual on the basis of genetic infor13 mation concerning the individual (or informa14 tion about a request for, or the receipt of, ge15 netic services by such individual or family mem16 ber of such individual). 

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

18 ‘family member’, ‘genetic services’, and ‘genetic 

19 information’ shall have the meanings given such 

20 terms in subsection (v).’’. 

21 (2) EFFECTIVE DATE.—The amendment made 

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

23 for policy years beginning after the date that is 18 

24 months after the date of enactment of this Act. 

25 (b) LIMITATIONS ON GENETIC TESTING.— 
36

•S 306 IS

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

2 Security Act (42 U.S.C. 1395ss) is amended by add3 ing at the end the following: 

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

5 ‘‘(1) GENETIC TESTING.— 

6 ‘‘(A) LIMITATION ON REQUESTING OR RE7 QUIRING GENETIC TESTING.—An issuer of a 

8 medicare supplemental policy shall not request 

9 or require an individual or a family member of 

10 such individual to undergo a genetic test. 

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

12 in this title shall be construed to— 

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

14 care professional who is providing health 

15 care services with respect to an individual 

16 to request that such individual or a family 

17 member of such individual undergo a ge18 netic test; 

19 ‘‘(ii) limit the authority of a health 

20 care professional who is employed by or af21 filiated with an issuer of a medicare sup22 plemental policy and who is providing 

23 health care services to an individual as 

24 part of a bona fide wellness program to no25 tify such individual of the availability of a 
37

•S 306 IS

1 genetic test or to provide information to 

2 such individual regarding such genetic test; 

3 or 

4 ‘‘(iii) authorize or permit a health 

5 care professional to require that an indi6 vidual undergo a genetic test. 

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

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

9 member’ means with respect to an individual— 

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

11 ‘‘(ii) a dependent child of the indi12 vidual, including a child who is born to or 

13 placed for adoption with the individual; or 

14 ‘‘(iii) any other individuals related by 

15 blood to the individual or to the spouse or 

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

17 ‘‘(B) GENETIC INFORMATION.— 

18 ‘‘(i) IN GENERAL.—Except as pro19 vided in clause (ii), the term ‘genetic infor20 mation’ means information about— 

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

22 ‘‘(II) the genetic tests of family 

23 members of the individual; or 
38

•S 306 IS

1 ‘‘(III) the occurrence of a disease 

2 or disorder in family members of the 

3 individual. 

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

5 information’ shall not include information 

6 about the sex or age of an individual. 

7 ‘‘(C) GENETIC TEST.— 

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

9 test’ means an analysis of human DNA, 

10 RNA, chromosomes, proteins, or metabo11 lites, that detects genotypes, mutations, or 

12 chromosomal changes. 

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

14 test’ does not mean— 

15 ‘‘(I) an analysis of proteins or 

16 metabolites that does not detect 

17 genotypes, mutations, or chromosomal 

18 changes; or 

19 ‘‘(II) an analysis of proteins or 

20 metabolites that is directly related to 

21 a manifested disease, disorder, or 

22 pathological condition that could rea23 sonably be detected by a health care 

24 professional with appropriate training 
39

•S 306 IS

1 and expertise in the field of medicine 

2 involved. 

3 ‘‘(D) GENETIC SERVICES.—The term ‘ge4 netic services’ means— 

5 ‘‘(i) a genetic test; 

6 ‘‘(ii) genetic counseling (such as ob7 taining, interpreting, or assessing genetic 

8 information); or 

9 ‘‘(iii) genetic education. 

10 ‘‘(E) ISSUER OF A MEDICARE SUPPLE11 MENTAL POLICY.—The term ‘issuer of a medi12 care supplemental policy’ includes a third-party 

13 administrator or other person acting for or on 

14 behalf of such issuer.’’. 

15 (2) CONFORMING AMENDMENT.—Section 

16 1882(o) of the Social Security Act (42 U.S.C. 

17 1395ss(o)) is amended by adding at the end the fol18 lowing: 

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

20 policy complies with subsection (s)(2)(E) and sub21 section (v).’’. 

22 (3) EFFECTIVE DATE.—The amendments made 

23 by this subsection shall apply with respect to an 

24 issuer of a medicare supplemental policy for policy 
40

•S 306 IS

1 years beginning on or after the date that is 18 

2 months after the date of enactment of this Act. 

3 (c) TRANSITION PROVISIONS.— 

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

5 and Human Services identifies a State as requiring 

6 a change to its statutes or regulations to conform its 

7 regulatory program to the changes made by this sec8 tion, the State regulatory program shall not be con9 sidered to be out of compliance with the require10 ments of section 1882 of the Social Security Act due 

11 solely to failure to make such change until the date 

12 specified in paragraph (4). 

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

14 30, 2006, the National Association of Insurance 

15 Commissioners (in this subsection referred to as the 

16 ‘‘NAIC’’) modifies its NAIC Model Regulation relat17 ing to section 1882 of the Social Security Act (re18 ferred to in such section as the 1991 NAIC Model 

19 Regulation, as subsequently modified) to conform to 

20 the amendments made by this section, such revised 

21 regulation incorporating the modifications shall be 

22 considered to be the applicable NAIC model regula23 tion (including the revised NAIC model regulation 

24 and the 1991 NAIC Model Regulation) for the pur25 poses of such section. 
41

•S 306 IS

1 (3) SECRETARY STANDARDS.—If the NAIC 

2 does not make the modifications described in para3 graph (2) within the period specified in such para4 graph, the Secretary of Health and Human Services 

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

6 modifications described in such paragraph and such 

7 revised regulation incorporating the modifications 

8 shall be considered to be the appropriate regulation 

9 for the purposes of such section. 

10 (4) DATE SPECIFIED.— 

11 (A) IN GENERAL.—Subject to subpara12 graph (B), the date specified in this paragraph 

13 for a State is the earlier of— 

14 (i) the date the State changes its stat15 utes or regulations to conform its regu16 latory program to the changes made by 

17 this section, or 

18 (ii) October 1, 2006. 

19 (B) ADDITIONAL LEGISLATIVE ACTION RE20 QUIRED.—In the case of a State which the Sec21 retary identifies as— 

22 (i) requiring State legislation (other 

23 than legislation appropriating funds) to 

24 conform its regulatory program to the 

25 changes made in this section, but 
42

•S 306 IS

1 (ii) having a legislature which is not 

2 scheduled to meet in 2006 in a legislative 

3 session in which such legislation may be 

4 considered, the date specified in this para5 graph is the first day of the first calendar 

6 quarter beginning after the close of the 

7 first legislative session of the State legisla8 ture that begins on or after July 1, 2006. 

9 For purposes of the previous sentence, in 

10 the case of a State that has a 2-year legis11 lative session, each year of such session 

12 shall be deemed to be a separate regular 

13 session of the State legislature. 

14 SEC. 105. PRIVACY AND CONFIDENTIALITY. 

15 (a) APPLICABILITY.—Except as provided in sub16 section (d), the provisions of this section shall apply to 

17 group health plans, health insurance issuers (including 

18 issuers in connection with group health plans or individual 

19 health coverage), and issuers of medicare supplemental 

20 policies, without regard to— 

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

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

23 (2) section 2721(a) of the Public Health Serv24 ice Act (42 U.S.C. 300gg–21(a)); and 
43

•S 306 IS

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

2 Code of 1986. 

3 (b) COMPLIANCE WITH CERTAIN CONFIDENTIALITY

4 STANDARDS WITH RESPECT TO GENETIC INFORMA5 TION.— 

6 (1) IN GENERAL.—The regulations promulgated 

7 by the Secretary of Health and Human Services 

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

9 (42 U.S.C. 1320d et seq.) and section 264 of the 

10 Health Insurance Portability and Accountability Act 

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

12 use or disclosure of genetic information. 

13 (2) PROHIBITION ON UNDERWRITING AND PRE14 MIUM RATING.—Notwithstanding paragraph (1), a 

15 group health plan, a health insurance issuer, or 

16 issuer of a medicare supplemental policy shall not 

17 use or disclose genetic information (including infor18 mation about a request for or a receipt of genetic 

19 services by an individual or family member of such 

20 individual) for purposes of underwriting, determina21 tions of eligibility to enroll, premium rating, or the 

22 creation, renewal or replacement of a plan, contract 

23 or coverage for health insurance or health benefits. 

24 (c) PROHIBITION ON COLLECTION OF GENETIC IN25 FORMATION.— 
44

•S 306 IS

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

2 insurance issuer, or issuer of a medicare supple3 mental policy shall not request, require, or purchase 

4 genetic information (including information about a 

5 request for or a receipt of genetic services by an in6 dividual or family member of such individual) for 

7 purposes of underwriting, determinations of eligi8 bility to enroll, premium rating, or the creation, re9 newal or replacement of a plan, contract or coverage 

10 for health insurance or health benefits. 

11 (2) LIMITATION RELATING TO THE COLLEC12 TION OF GENETIC INFORMATION PRIOR TO ENROLL13 MENT.—A group health plan, health insurance 

14 issuer, or issuer of a medicare supplemental policy 

15 shall not request, require, or purchase genetic infor16 mation (including information about a request for or 

17 a receipt of genetic services by an individual or fam18 ily member of such individual) concerning a partici19 pant, beneficiary, or enrollee prior to the enrollment, 

20 and in connection with such enrollment, of such indi21 vidual under the plan, coverage, or policy. 

22 (3) INCIDENTAL COLLECTION.—Where a group 

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

24 medicare supplemental policy obtains genetic infor25 mation incidental to the requesting, requiring, or 
45

•S 306 IS

1 purchasing of other information concerning a partic2 ipant, beneficiary, or enrollee, such request, require3 ment, or purchase shall not be considered a violation 

4 of this subsection if— 

5 (A) such request, requirement, or purchase 

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

7 (B) any genetic information (including in8 formation about a request for or receipt of ge9 netic services) requested, required, or purchased 

10 is not used or disclosed in violation of sub11 section (b). 

12 (d) APPLICATION OF CONFIDENTIALITY STAND13 ARDS.—The provisions of subsections (b) and (c) shall not 

14 apply— 

15 (1) to group health plans, health insurance 

16 issuers, or issuers of medicare supplemental policies 

17 that are not otherwise covered under the regulations 

18 promulgated by the Secretary of Health and Human 

19 Services under part C of title XI of the Social Secu20 rity Act (42 U.S.C. 1320d et seq.) and section 264 

21 of the Health Insurance Portability and Account22 ability Act of 1996 (42 U.S.C. 1320d–2 note); and 

23 (2) to genetic information that is not considered 

24 to be individually-identifiable health information 

25 under the regulations promulgated by the Secretary 
46

•S 306 IS

1 of Health and Human Services under part C of title 

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

3 seq.) and section 264 of the Health Insurance Port4 ability and Accountability Act of 1996 (42 U.S.C. 

5 1320d–2 note). 

6 (e) ENFORCEMENT.—A group health plan, health in7 surance issuer, or issuer of a medicare supplemental policy 

8 that violates a provision of this section shall be subject 

9 to the penalties described in sections 1176 and 1177 of 

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

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

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

13 Act. 

14 (f) PREEMPTION.— 

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

16 under this section or a regulation promulgated under 

17 this section shall supersede any contrary provision of 

18 State law unless such provision of State law imposes 

19 requirements, standards, or implementation speci20 fications that are more stringent than the require21 ments, standards, or implementation specifications 

22 imposed under this section or such regulations. No 

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

24 a State law that is more stringent shall be pre25 empted by this section. 
47

•S 306 IS

1 (2) RULE OF CONSTRUCTION.—Nothing in 

2 paragraph (1) shall be construed to establish a pen3 alty, remedy, or cause of action under State law if 

4 such penalty, remedy, or cause of action is not oth5 erwise available under such State law. 

6 (g) COORDINATION WITH PRIVACY REGULATIONS.—

7 The Secretary shall implement and administer this section 

8 in a manner that is consistent with the implementation 

9 and administration by the Secretary of the regulations 

10 promulgated by the Secretary of Health and Human Serv11 ices under part C of title XI of the Social Security Act 

12 (42 U.S.C. 1320d et seq.) and section 264 of the Health 

13 Insurance Portability and Accountability Act of 1996 (42 

14 U.S.C. 1320d–2 note). 

15 (h) DEFINITIONS.—In this section: 

16 (1) GENETIC INFORMATION; GENETIC SERV17 ICES.—The terms ‘‘family member’’, ‘‘genetic infor18 mation’’, ‘‘genetic services’’, and ‘‘genetic test’’ have 

19 the meanings given such terms in section 2791 of 

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

21 91), as amended by this Act. 

22 (2) GROUP HEALTH PLAN; HEALTH INSURANCE

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

24 ‘‘health insurance issuer’’ include only those plans 
48

•S 306 IS

1 and issuers that are covered under the regulations 

2 described in subsection (d)(1). 

3 (3) ISSUER OF A MEDICARE SUPPLEMENTAL

4 POLICY.—The term ‘‘issuer of a medicare supple5 mental policy’’ means an issuer described in section 

6 1882 of the Social Security Act (42 insert 1395ss). 

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

8 the Secretary of Health and Human Services. 

9 SEC. 106. ASSURING COORDINATION. 

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

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

12 and Human Services, and the Secretary of Labor shall en13 sure, through the execution of an interagency memo14 randum of understanding among such Secretaries, that— 

15 (1) regulations, rulings, and interpretations 

16 issued by such Secretaries relating to the same mat17 ter over which two or more such Secretaries have re18 sponsibility under this title (and the amendments 

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

20 the same effect at all times; and 

21 (2) coordination of policies relating to enforcing 

22 the same requirements through such Secretaries in 

23 order to have a coordinated enforcement strategy 

24 that avoids duplication of enforcement efforts and 

25 assigns priorities in enforcement. 
49

•S 306 IS

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

2 of Health and Human Services has the sole authority to 

3 promulgate regulations to implement section 105. 

4 SEC. 107. REGULATIONS; EFFECTIVE DATE. 

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

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

7 the Secretary of Health and Human Services, and the Sec8 retary of the Treasury shall issue final regulations in an 

9 accessible format to carry out this title. 

10 (b) EFFECTIVE DATE.—Except as provided in sec11 tion 104, the amendments made by this title shall take 

12 effect on the date that is 18 months after the date of en13 actment of this Act. 

14 TITLE II—PROHIBITING EM15 PLOYMENT DISCRIMINATION 

16 ON THE BASIS OF GENETIC 

17 INFORMATION 

18 SEC. 201. DEFINITIONS. 

19 In this title: 

20 (1) COMMISSION.—The term ‘‘Commission’’ 

21 means the Equal Employment Opportunity Commis22 sion as created by section 705 of the Civil Rights 

23 Act of 1964 (42 U.S.C. 2000e–4). 

24 (2) EMPLOYEE; EMPLOYER; EMPLOYMENT

25 AGENCY; LABOR ORGANIZATION; MEMBER.— 
50

•S 306 IS

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

2 means— 

3 (i) an employee (including an appli4 cant), as defined in section 701(f) of the 

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

6 2000e(f)); 

7 (ii) a State employee (including an ap8 plicant) described in section 304(a) of the 

9 Government Employee Rights Act of 1991 

10 (42 U.S.C. 2000e–16c(a)); 

11 (iii) a covered employee (including an 

12 applicant), as defined in section 101 of the 

13 Congressional Accountability Act of 1995 

14 (2 U.S.C. 1301); 

15 (iv) a covered employee (including an 

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

17 title 3, United States Code; or 

18 (v) an employee or applicant to which 

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

20 1964 (42 U.S.C. 2000e–16(a)) applies. 

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

22 means— 

23 (i) an employer (as defined in section 

24 701(b) of the Civil Rights Act of 1964 (42 

25 U.S.C. 2000e(b)); 
51

•S 306 IS

1 (ii) an entity employing a State em2 ployee described in section 304(a) of the 

3 Government Employee Rights Act of 1991; 

4 (iii) an employing office, as defined in 

5 section 101 of the Congressional Account6 ability Act of 1995; 

7 (iv) an employing office, as defined in 

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

9 Code; or 

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

11 of the Civil Rights Act of 1964 applies. 

12 (C) EMPLOYMENT AGENCY; LABOR ORGA13 NIZATION.—The terms ‘‘employment agency’’ 

14 and ‘‘labor organization’’ have the meanings 

15 given the terms in section 701 of the Civil 

16 Rights Act of 1964 (42 U.S.C. 2000e). 

17 (D) MEMBER.—The term ‘‘member’’, with 

18 respect to a labor organization, includes an ap19 plicant for membership in a labor organization. 

20 (3) FAMILY MEMBER.—The term ‘‘family mem21 ber’’ means with respect to an individual— 

22 (A) the spouse of the individual; 

23 (B) a dependent child of the individual, in24 cluding a child who is born to or placed for 

25 adoption with the individual; and 
52

•S 306 IS

1 (C) all other individuals related by blood to 

2 the individual or the spouse or child described 

3 in subparagraph (A) or (B). 

4 (4) GENETIC INFORMATION.— 

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

6 subparagraph (B), the term ‘‘genetic informa7 tion’’ 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 dis12 order in family members of the individual. 

13 (B) EXCEPTIONS.—The term ‘‘genetic in14 formation’’ shall not include information about 

15 the sex or age of an individual. 

16 (5) GENETIC MONITORING.—The term ‘‘genetic 

17 monitoring’’ means the periodic examination of em18 ployees to evaluate acquired modifications to their 

19 genetic material, such as chromosomal damage or 

20 evidence of increased occurrence of mutations, that 

21 may have developed in the course of employment due 

22 to exposure to toxic substances in the workplace, in 

23 order to identify, evaluate, and respond to the ef24 fects of or control adverse environmental exposures 

25 in the workplace. 
53

•S 306 IS

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

2 services’’ means— 

3 (A) a genetic test; 

4 (B) genetic counseling (such as obtaining, 

5 interpreting or assessing genetic information); 

6 or 

7 (C) genetic education. 

8 (7) GENETIC TEST.— 

9 (A) IN GENERAL.—The term ‘‘genetic 

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

11 chromosomes, proteins, or metabolites, that de12 tects genotypes, mutations, or chromosomal 

13 changes. 

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

15 does not mean an analysis of proteins or me16 tabolites that does not detect genotypes, 

17 mutations, or chromosomal changes. 

18 SEC. 202. EMPLOYER PRACTICES. 

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

20 unlawful employment practice for an employer— 

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

22 employee, or otherwise to discriminate against any 

23 employee with respect to the compensation, terms, 

24 conditions, or privileges of employment of the em25 ployee, because of genetic information with respect 
54

•S 306 IS

1 to the employee (or information about a request for 

2 or the receipt of genetic services by such employee 

3 or family member of such employee); or 

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

5 of the employer in any way that would deprive or 

6 tend to deprive any employee of employment oppor7 tunities or otherwise adversely affect the status of 

8 the employee as an employee, because of genetic in9 formation with respect to the employee (or informa10 tion about a request for or the receipt of genetic 

11 services by such employee or family member of such 

12 employee). 

13 (b) ACQUISITION OF GENETIC INFORMATION.—It 

14 shall be an unlawful employment practice for an employer 

15 to request, require, or purchase genetic information with 

16 respect to an employee or a family member of the em17 ployee (or information about a request for the receipt of 

18 genetic services by such employee or a family member of 

19 such employee) except— 

20 (1) where an employer inadvertently requests or 

21 requires family medical history of the employee or 

22 family member of the employee; 

23 (2) where— 
55

•S 306 IS

1 (A) health or genetic services are offered 

2 by the employer, including such services offered 

3 as part of a bona fide wellness program; 

4 (B) the employee provides prior, knowing, 

5 voluntary, and written authorization; 

6 (C) only the employee (or family member 

7 if the family member is receiving genetic serv8 ices) and the licensed health care professional 

9 or board certified genetic counselor involved in 

10 providing such services receive individually iden11 tifiable information concerning the results of 

12 such services; and 

13 (D) any individually identifiable genetic in14 formation provided under subparagraph (C) in 

15 connection with the services provided under 

16 subparagraph (A) is only available for purposes 

17 of such services and shall not be disclosed to 

18 the employer except in aggregate terms that do 

19 not disclose the identity of specific employees; 

20 (3) where an employer requests or requires 

21 family medical history from the employee to comply 

22 with the certification provisions of section 103 of the 

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

24 2613) or such requirements under State family and 

25 medical leave laws; 
56

•S 306 IS

1 (4) where an employer purchases documents 

2 that are commercially and publicly available (includ3 ing newspapers, magazines, periodicals, and books, 

4 but not including medical databases or court 

5 records) that include family medical history; or 

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

7 for genetic monitoring of the biological effects of 

8 toxic substances in the workplace, but only if— 

9 (A) the employer provides written notice of 

10 the genetic monitoring to the employee; 

11 (B)(i) the employee provides prior, know12 ing, voluntary, and written authorization; or 

13 (ii) the genetic monitoring is required by 

14 Federal or State law; 

15 (C) the employee is informed of individual 

16 monitoring results; 

17 (D) the monitoring is in compliance with— 

18 (i) any Federal genetic monitoring 

19 regulations, including any such regulations 

20 that may be promulgated by the Secretary 

21 of Labor pursuant to the Occupational 

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

23 651 et seq.), the Federal Mine Safety and 

24 Health Act of 1977 (30 U.S.C. 801 et 
57

•S 306 IS

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

2 (42 U.S.C. 2011 et seq.); or 

3 (ii) State genetic monitoring regula4 tions, in the case of a State that is imple5 menting genetic monitoring regulations 

6 under the authority of the Occupational 

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

8 651 et seq.); and 

9 (E) the employer, excluding any licensed 

10 health care professional or board certified ge11 netic counselor that is involved in the genetic 

12 monitoring program, receives the results of the 

13 monitoring only in aggregate terms that do not 

14 disclose the identity of specific employees; 

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

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

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

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

19 (a) or treated or disclosed in a manner that violates sec20 tion 206. 

21 SEC. 203. EMPLOYMENT AGENCY PRACTICES. 

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

23 unlawful employment practice for an employment agen24 cy— 
58

•S 306 IS

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

2 otherwise to discriminate against, any individual be3 cause of genetic information with respect to the indi4 vidual (or information about a request for or the re5 ceipt of genetic services by such individual or family 

6 member of such individual); 

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

8 fail or refuse to refer for employment any individual 

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

10 individual of employment opportunities, or otherwise 

11 adversely affect the status of the individual as an 

12 employee, because of genetic information with re13 spect to the individual (or information about a re14 quest for or the receipt of genetic services by such 

15 individual or family member of such individual); or 

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

17 discriminate against an individual in violation of this 

18 title. 

19 (b) ACQUISITION OF GENETIC INFORMATION.—It 

20 shall be an unlawful employment practice for an employ21 ment agency to request, require, or purchase genetic infor22 mation with respect to an individual or a family member 

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

24 receipt of genetic services by such individual or a family 

25 member of such individual) except— 
59

•S 306 IS

1 (1) where an employment agency inadvertently 

2 requests or requires family medical history of the in3 dividual or family member of the individual; 

4 (2) where— 

5 (A) health or genetic services are offered 

6 by the employment agency, including such serv7 ices offered as part of a bona fide wellness pro8 gram; 

9 (B) the individual provides prior, knowing, 

10 voluntary, and written authorization; 

11 (C) only the individual (or family member 

12 if the family member is receiving genetic serv13 ices) and the licensed health care professional 

14 or board certified genetic counselor involved in 

15 providing such services receive individually iden16 tifiable information concerning the results of 

17 such services; and 

18 (D) any individually identifiable genetic in19 formation provided under subparagraph (C) in 

20 connection with the services provided under 

21 subparagraph (A) is only available for purposes 

22 of such services and shall not be disclosed to 

23 the employment agency except in aggregate 

24 terms that do not disclose the identity of spe25 cific individuals; 
60

•S 306 IS

1 (3) where an employment agency requests or re2 quires family medical history from the individual to 

3 comply with the certification provisions of section 

4 103 of the Family and Medical Leave Act of 1993 

5 (29 U.S.C. 2613) or such requirements under State 

6 family and medical leave laws; 

7 (4) where an employment agency purchases 

8 documents that are commercially and publicly avail9 able (including newspapers, magazines, periodicals, 

10 and books, but not including medical databases or 

11 court records) that include family medical history; or 

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

13 for genetic monitoring of the biological effects of 

14 toxic substances in the workplace, but only if— 

15 (A) the employment agency provides writ16 ten notice of the genetic monitoring to the indi17 vidual; 

18 (B)(i) the individual provides prior, know19 ing, voluntary, and written authorization; or 

20 (ii) the genetic monitoring is required by 

21 Federal or State law; 

22 (C) the individual is informed of individual 

23 monitoring results; 

24 (D) the monitoring is in compliance with— 
61

•S 306 IS

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 employment agency, excluding any 

17 licensed health care professional or board cer18 tified genetic counselor that is involved in the 

19 genetic monitoring program, receives the results 

20 of the monitoring only in aggregate terms that 

21 do not disclose the identity of specific individ22 uals; 

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

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

25 (5) of subsection (b) applies, such information may not 
62

•S 306 IS

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

2 (a) or treated or disclosed in a manner that violates sec3 tion 206. 

4 SEC. 204. LABOR ORGANIZATION PRACTICES. 

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

6 unlawful employment practice for a labor organization— 

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

8 of the organization, or otherwise to discriminate 

9 against, any member because of genetic information 

10 with respect to the member (or information about a 

11 request for or the receipt of genetic services by such 

12 member or family member of such member); 

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

14 of the organization, or fail or refuse to refer for em15 ployment any member, in any way that would de16 prive or tend to deprive any member of employment 

17 opportunities, or otherwise adversely affect the sta18 tus of the member as an employee, because of ge19 netic information with respect to the member (or in20 formation about a request for or the receipt of ge21 netic services by such member or family member of 

22 such member); or 

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

24 discriminate against a member in violation of this 

25 title. 
63

•S 306 IS

1 (b) ACQUISITION OF GENETIC INFORMATION.—It 

2 shall be an unlawful employment practice for a labor orga3 nization to request, require, or purchase genetic informa4 tion with respect to a member or a family member of the 

5 member (or information about a request for the receipt 

6 of genetic services by such member or a family member 

7 of such member) except— 

8 (1) where a labor organization inadvertently re9 quests or requires family medical history of the 

10 member or family member of the member; 

11 (2) where— 

12 (A) health or genetic services are offered 

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

16 (B) the member provides prior, knowing, 

17 voluntary, and written authorization; 

18 (C) only the member (or family member if 

19 the family member is receiving genetic services) 

20 and the licensed health care professional or 

21 board certified genetic counselor involved in 

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

24 such services; and 
64

•S 306 IS

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 labor organization except in aggregate 

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

9 (3) where a labor organization requests or re10 quires family medical history from the members 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 a labor organization purchases docu16 ments that are commercially and publicly available 

17 (including newspapers, magazines, periodicals, and 

18 books, but not including medical databases or court 

19 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 labor organization provides written 

24 notice of the genetic monitoring to the member; 
65

•S 306 IS

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

2 voluntary, and written authorization; or 

3 (ii) the genetic monitoring is required by 

4 Federal or State law; 

5 (C) the member 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 labor organization, excluding any 

24 licensed health care professional or board cer25 tified genetic counselor that is involved in the 
66

•S 306 IS

1 genetic monitoring program, receives the results 

2 of the monitoring only in aggregate terms that 

3 do not disclose the identity of specific members; 

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

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

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

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

8 (a) or treated or disclosed in a manner that violates sec9 tion 206. 

10 SEC. 205. TRAINING PROGRAMS. 

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

12 unlawful employment practice for any employer, labor or13 ganization, or joint labor-management committee control14 ling apprenticeship or other training or retraining, includ15 ing on-the-job training programs— 

16 (1) to discriminate against any individual be17 cause of genetic information with respect to the indi18 vidual (or information about a request for or the re19 ceipt of genetic services by such individual or a fam20 ily member of such individual) in admission to, or 

21 employment in, any program established to provide 

22 apprenticeship or other training or retraining; 

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

24 for or participants in such apprenticeship or other 

25 training or retraining, or fail or refuse to refer for 
67

•S 306 IS

1 employment any individual, in any way that would 

2 deprive or tend to deprive any individual of employ3 ment opportunities, or otherwise adversely affect the 

4 status of the individual as an employee, because of 

5 genetic information with respect to the individual (or 

6 information about a request for or receipt of genetic 

7 services by such individual or family member of such 

8 individual); or 

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

10 discriminate against an applicant for or a partici11 pant in such apprenticeship or other training or re12 training in violation of this title. 

13 (b) ACQUISITION OF GENETIC INFORMATION.—It 

14 shall be an unlawful employment practice for an employer, 

15 labor organization, or joint labor-management committee 

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

17 genetic information with respect to an individual or a fam18 ily member of the individual (or information about a re19 quest for the receipt of genetic services by such individual 

20 or a family member of such individual) except— 

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

22 joint labor-management committee inadvertently re23 quests or requires family medical history of the indi24 vidual or family member of the individual; 

25 (2) where— 
68

•S 306 IS

1 (A) health or genetic services are offered 

2 by the employer, labor organization, or joint 

3 labor-management committee, including such 

4 services offered as part of a bona fide wellness 

5 program; 

6 (B) the individual provides prior, knowing, 

7 voluntary, and written authorization; 

8 (C) only the individual (or family member 

9 if the family member is receiving genetic serv10 ices) and the licensed health care professional 

11 or board certified genetic counselor involved in 

12 providing such services receive individually iden13 tifiable information concerning the results of 

14 such services; 

15 (D) any individually identifiable genetic in16 formation provided under subparagraph (C) in 

17 connection with the services provided under 

18 subparagraph (A) is only available for purposes 

19 of such services and shall not be disclosed to 

20 the employer, labor organization, or joint labor21 management committee except in aggregate 

22 terms that do not disclose the identity of spe23 cific individuals; 

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

25 joint labor-management committee requests or re-
69

•S 306 IS

1 quires family medical history from the individual to 

2 comply with the certification provisions of section 

3 103 of the Family and Medical Leave Act of 1993 

4 (29 U.S.C. 2613) or such requirements under State 

5 family and medical leave laws; 

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

7 joint labor-management committee purchases docu8 ments that are commercially and publicly available 

9 (including newspapers, magazines, periodicals, and 

10 books, but not including medical databases or court 

11 records) that include family medical history; or 

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

13 for genetic monitoring of the biological effects of 

14 toxic substances in the workplace, but only if— 

15 (A) the employer, labor organization, or 

16 joint labor-management committee provides 

17 written notice of the genetic monitoring to the 

18 individual; 

19 (B)(i) the individual 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 individual is informed of individual 

24 monitoring results; 

25 (D) the monitoring is in compliance with— 
70

•S 306 IS

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, labor organization, or 

17 joint labor-management committee, excluding 

18 any licensed health care professional or board 

19 certified genetic counselor that is involved in 

20 the genetic monitoring program, receives the re21 sults of the monitoring only in aggregate terms 

22 that do not disclose the identity of specific indi23 viduals; 

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

25 of information to which any of paragraphs (1) through 
71

•S 306 IS

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

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

3 (a) or treated or disclosed in a manner that violates sec4 tion 206. 

5 SEC. 206. CONFIDENTIALITY OF GENETIC INFORMATION. 

6 (a) TREATMENT OF INFORMATION AS PART OF CON7 FIDENTIAL MEDICAL RECORD.—If an employer, employ8 ment agency, labor organization, or joint labor-manage9 ment committee possesses genetic information about an 

10 employee or member (or information about a request for 

11 or receipt of genetic services by such employee or member 

12 or family member of such employee or member), such in13 formation shall be maintained on separate forms and in 

14 separate medical files and be treated as a confidential 

15 medical record of the employee or member. 

16 (b) LIMITATION ON DISCLOSURE.—An employer, em17 ployment agency, labor organization, or joint labor-man18 agement committee shall not disclose genetic information 

19 concerning an employee or member (or information about 

20 a request for or receipt of genetic services by such em21 ployee or member or family member of such employee or 

22 member) except— 

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

24 family member is receiving the genetic services) or 
72

•S 306 IS

1 member of a labor organization at the request of the 

2 employee or member of such organization; 

3 (2) to an occupational or other health re4 searcher if the research is conducted in compliance 

5 with the regulations and protections provided for 

6 under part 46 of title 45, Code of Federal Regula7 tions; 

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

9 that— 

10 (A) the employer, employment agency, 

11 labor organization, or joint labor-management 

12 committee may disclose only the genetic infor13 mation expressly authorized by such order; and 

14 (B) if the court order was secured without 

15 the knowledge of the employee or member to 

16 whom the information refers, the employer, em17 ployment agency, labor organization, or joint 

18 labor-management committee shall provide the 

19 employee or member with adequate notice to 

20 challenge the court order; 

21 (4) to government officials who are inves22 tigating compliance with this title if the information 

23 is relevant to the investigation; or 

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

25 in connection with the employee’s compliance with 
73

•S 306 IS

1 the certification provisions of section 103 of the 

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

3 2613) or such requirements under State family and 

4 medical leave laws. 

5 SEC. 207. REMEDIES AND ENFORCEMENT. 

6 (a) EMPLOYEES COVERED BY TITLE VII OF THE

7 CIVIL RIGHTS ACT OF 1964.— 

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

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

10 710, and 711 of the Civil Rights Act of 1964 (42 

11 U.S.C. 2000e–4 et seq.) to the Commission, the At12 torney General, or any person, alleging a violation of 

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

14 be the powers, remedies, and procedures this title 

15 provides to the Commission, the Attorney General, 

16 or any person, respectively, alleging an unlawful em17 ployment practice in violation of this title against an 

18 employee described in section 201(2)(A)(i), except as 

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

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

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

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

23 1988), shall be powers, remedies, and procedures 

24 this title provides to the Commission, the Attorney 

25 General, or any person, alleging such a practice. 
74

•S 306 IS

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 limita4 tions contained in subsection (b)(3) of such section 

5 1977A, shall be powers, remedies, and procedures 

6 this title provides to the Commission, the Attorney 

7 General, 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 (b) EMPLOYEES COVERED BY GOVERNMENT EM12 PLOYEE RIGHTS ACT OF 1991.— 

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

14 procedures provided in sections 302 and 304 of the 

15 Government Employee Rights Act of 1991 (42 

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

17 or any person, alleging a violation of section 

18 302(a)(1) of that Act (42 U.S.C. 2000e–16b(a)(1)) 

19 shall be the powers, remedies, and procedures this 

20 title provides to the Commission, or any person, re21 spectively, alleging an unlawful employment practice 

22 in violation of this title against an employee de23 scribed in section 201(2)(A)(ii), except as provided 

24 in paragraphs (2) and (3). 
75

•S 306 IS

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

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

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

4 1988), shall be powers, remedies, and procedures 

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

6 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 limita10 tions contained in subsection (b)(3) of such section 

11 1977A, shall be powers, remedies, and procedures 

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

13 alleging such a practice (not an employment practice 

14 specifically excluded from coverage under section 

15 1977A(a)(1) of the Revised Statutes). 

16 (c) EMPLOYEES COVERED BY CONGRESSIONAL AC17 COUNTABILITY ACT OF 1995.— 

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

19 procedures provided in the Congressional Account20 ability Act of 1995 (2 U.S.C. 1301 et seq.) to the 

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

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

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

24 shall be the powers, remedies, and procedures this 

25 title provides to that Board, or any person, alleging 
76

•S 306 IS

1 an unlawful employment practice in violation of this 

2 title against an employee described in section 

3 201(2)(A)(iii), 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 that Board, or any person, al10 leging 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 limita14 tions contained in subsection (b)(3) of such section 

15 1977A, shall be powers, remedies, and procedures 

16 this title provides to that Board, or any person, al17 leging such a practice (not an employment practice 

18 specifically excluded from coverage under section 

19 1977A(a)(1) of the Revised Statutes). 

20 (4) OTHER APPLICABLE PROVISIONS.—With re21 spect to a claim alleging a practice described in 

22 paragraph (1), title III of the Congressional Ac23 countability Act of 1995 (2 U.S.C. 1381 et seq.) 

24 shall apply in the same manner as such title applies 
77

•S 306 IS

1 with respect to a claim alleging a violation of section 

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

3 (d) EMPLOYEES COVERED BY CHAPTER 5 OF TITLE

4 3, UNITED STATES CODE.— 

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

6 procedures provided in chapter 5 of title 3, United 

7 States Code, to the President, the Commission, the 

8 Merit Systems Protection Board, or any person, al9 leging a violation of section 411(a)(1) of that title, 

10 shall be the powers, remedies, and procedures this 

11 title provides to the President, the Commission, such 

12 Board, or any person, respectively, alleging an un13 lawful employment practice in violation of this title 

14 against an employee described in section 

15 201(2)(A)(iv), except as provided in paragraphs (2) 

16 and (3). 

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

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

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

20 1988), shall be powers, remedies, and procedures 

21 this title provides to the President, the Commission, 

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

23 (3) DAMAGES.—The powers, remedies, and pro24 cedures provided in section 1977A of the Revised 

25 Statutes (42 U.S.C. 1981a), including the limita-
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1 tions contained in subsection (b)(3) of such section 

2 1977A, 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 (not an employment practice specifically excluded 

6 from coverage under section 1977A(a)(1) of the Re7 vised Statutes). 

8 (e) EMPLOYEES COVERED BY SECTION 717 OF THE

9 CIVIL RIGHTS ACT OF 1964.— 

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

11 procedures provided in section 717 of the Civil 

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

13 Commission, the Attorney General, the Librarian of 

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

15 section shall be the powers, remedies, and proce16 dures this title provides to the Commission, the At17 torney General, the Librarian of Congress, or any 

18 person, respectively, alleging an unlawful employ19 ment practice in violation of this title against an em20 ployee or applicant described in section 

21 201(2)(A)(v), except as provided in paragraphs (2) 

22 and (3). 

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

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

25 of section 722 of the Revised Statutes (42 U.S.C. 
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1 1988), shall be powers, remedies, and procedures 

2 this title provides to the Commission, the Attorney 

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

4 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 Commission, the Attorney 

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

12 alleging such a practice (not an employment practice 

13 specifically excluded from coverage under section 

14 1977A(a)(1) of the Revised Statutes). 

15 (f) DEFINITION.—In this section, the term ‘‘Commis16 sion’’ means the Equal Employment Opportunity Commis17 sion. 

18 SEC. 208. DISPARATE IMPACT. 

19 (a) GENERAL RULE.—Notwithstanding any other 

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

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

22 (42 U.S.C. 2000e–d(k)), on the basis of genetic informa23 tion does not establish a cause of action under this Act. 

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

25 the date of enactment of this Act, there shall be estab-
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1 lished a commission, to be known as the Genetic Non2 discrimination Study Commission (referred to in this sec3 tion as the ‘‘Commission’’) to review the developing 

4 science of genetics and to make recommendations to Con5 gress regarding whether to provide a disparate impact 

6 cause of action under this Act. 

7 (c) MEMBERSHIP.— 

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

9 composed of 8 members, of which— 

10 (A) 1 member shall be appointed by the 

11 Majority Leader of the Senate; 

12 (B) 1 member shall be appointed by the 

13 Minority Leader of the Senate; 

14 (C) 1 member shall be appointed by the 

15 Chairman of the Committee on Health, Edu16 cation, Labor, and Pensions of the Senate; 

17 (D) 1 member shall be appointed by the 

18 ranking minority member of the Committee on 

19 Health, Education, Labor, and Pensions of the 

20 Senate; 

21 (E) 1 member shall be appointed by the 

22 Speaker of the House of Representatives; 

23 (F) 1 member shall be appointed by the 

24 Minority Leader of the House of Representa25 tives; 
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1 (G) 1 member shall be appointed by the 

2 Chairman of the Committee on Education and 

3 the Workforce of the House of Representatives; 

4 and 

5 (H) 1 member shall be appointed by the 

6 ranking minority member of the Committee on 

7 Education and the Workforce of the House of 

8 Representatives. 

9 (2) COMPENSATION AND EXPENSES.—The 

10 members of the Commission shall not receive com11 pensation for the performance of services for the 

12 Commission, but shall be allowed travel expenses, in13 cluding per diem in lieu of subsistence, at rates au14 thorized for employees of agencies under subchapter 

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

16 away from their homes or regular places of business 

17 in the performance of services for the Commission. 

18 (d) ADMINISTRATIVE PROVISIONS.— 

19 (1) LOCATION.—The Commission shall be lo20 cated in a facility maintained by the Equal Employ21 ment Opportunity Commission. 

22 (2) DETAIL OF GOVERNMENT EMPLOYEES.—

23 Any Federal Government employee may be detailed 

24 to the Commission without reimbursement, and such 
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1 detail shall be without interruption or loss of civil 

2 service status or privilege. 

3 (3) INFORMATION FROM FEDERAL AGENCIES.—

4 The Commission may secure directly from any Fed5 eral department or agency such information as the 

6 Commission considers necessary to carry out the 

7 provisions of this section. Upon request of the Com8 mission, the head of such department or agency 

9 shall furnish such information to the Commission. 

10 (4) HEARINGS.—The Commission may hold 

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

12 take such testimony, and receive such evidence as 

13 the Commission considers advisable to carry out the 

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

15 possible, the Commission shall use existing data and 

16 research. 

17 (5) POSTAL SERVICES.—The Commission may 

18 use the United States mails in the same manner and 

19 under the same conditions as other departments and 

20 agencies of the Federal Government. 

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

22 members are appointed to the Commission under sub23 section (c)(1), the Commission shall submit to Congress 

24 a report that summarizes the findings of the Commission 
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1 and makes such recommendations for legislation as are 

2 consistent with this Act. 

3 (f) AUTHORIZATION OF APPROPRIATIONS.—There 

4 are authorized to be appropriated to the Equal Employ5 ment Opportunity Commission such sums as may be nec6 essary to carry out this section. 

7 SEC. 209. CONSTRUCTION. 

8 Nothing in this title shall be construed to— 

9 (1) limit the rights or protections of an indi10 vidual under the Americans with Disabilities Act of 

11 1990 (42 U.S.C. 12101 et seq.), including coverage 

12 afforded to individuals under section 102 of such 

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

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

15 (2)(A) limit the rights or protections of an indi16 vidual to bring an action under this title against an 

17 employer, employment agency, labor organization, or 

18 joint labor-management committee for a violation of 

19 this title; or 

20 (B) establish a violation under this title for an 

21 employer, employment agency, labor organization, or 

22 joint labor-management committee of a provision of 

23 the amendments made by title I; 

24 (3) limit the rights or protections of an indi25 vidual under any other Federal or State statute that 
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1 provides equal or greater protection to an individual 

2 than the rights or protections provided for under 

3 this title; 

4 (4) apply to the Armed Forces Repository of 

5 Specimen Samples for the Identification of Remains; 

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

7 obligations of employees or employers under applica8 ble workers’ compensation laws; 

9 (6) limit the authority of a Federal department 

10 or agency to conduct or sponsor occupational or 

11 other health research that is conducted in compli12 ance with the regulations contained in part 46 of 

13 title 45, Code of Federal Regulations (or any cor14 responding or similar regulation or rule); and 

15 (7) limit the statutory or regulatory authority 

16 of the Occupational Safety and Health Administra17 tion or the Mine Safety and Health Administration 

18 to promulgate or enforce workplace safety and 

19 health laws and regulations. 

20 SEC. 210. MEDICAL INFORMATION THAT IS NOT GENETIC 

21 INFORMATION. 

22 An employer, employment agency, labor organization, 

23 or joint labor-management committee shall not be consid24 ered to be in violation of this title based on the use, acqui25 sition, or disclosure of medical information that is not ge-
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1 netic information about a manifested disease, disorder, or 

2 pathological condition of an employee or member, includ3 ing a manifested disease, disorder, or pathological condi4 tion that has or may have a genetic basis. 

5 SEC. 211. REGULATIONS. 

6 Not later than 1 year after the date of enactment 

7 of this title, the Commission shall issue final regulations 

8 in an accessible format to carry out this title. 

9 SEC. 212. AUTHORIZATION OF APPROPRIATIONS. 

10 There are authorized to be appropriated such sums 

11 as may be necessary to carry out this title (except for sec12 tion 208). 

13 SEC. 213. EFFECTIVE DATE. 

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

15 after the date of enactment of this Act. 

16 TITLE III—MISCELLANEOUS 

17 PROVISION 

18 SEC. 301. SEVERABILITY. 

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

20 this Act, or the application of such provision or amend21 ment to any person or circumstance is held to be unconsti22 tutional, the remainder of this Act, the amendments made 

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

24 person or circumstance shall not be affected thereby.

Æ