I 

109TH CONGRESS 

1ST SESSION H. R. 1227 

To prohibit discrimination on the basis of genetic information with respect 

to health insurance and employment. 

IN THE HOUSE OF REPRESENTATIVES 

MARCH 10, 2005 

Mrs. BIGGERT (for herself, Ms. SLAUGHTER, Mr. NEY, Ms. ESHOO, Mr. NORWOOD, Mr. DINGELL, Mr. HYDE, Mr. GEORGE MILLER of California, 

Mrs. JOHNSON of Connecticut, Mr. RANGEL, Mr. GILLMOR, Mr. OWENS, 

Mrs. MYRICK, Mr. GORDON, Mr. FERGUSON, Mr. GENE GREEN of Texas, 

Mr. REGULA, Mr. STRICKLAND, Mr. WOLF, Mrs. CAPPS, Mr. WAMP, Mr. 

ALLEN, Mr. RAMSTAD, Mr. DAVIS of Florida, Ms. GRANGER, Mr. 

THOMPSON of California, Mr. PLATTS, Mr. LEWIS of Georgia, Mrs. JO

ANN DAVIS of Virginia, Mr. BERRY, Mrs. CAPITO, Mr. VAN HOLLEN, 

Mr. SAXTON, Mr. MICHAUD, Mr. BOEHLERT, Mrs. MALONEY, Mr. 

SHAYS, and Mr. KIND) introduced the following bill; which was referred 

to the Committee on Education and the Workforce, and in addition to 

the Committees on Energy and Commerce and Ways and Means, for a 

period to be subsequently determined by the Speaker, in each case for 

consideration of such provisions as fall within the jurisdiction of the committee concerned 

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, 
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1 SECTION 1. SHORT TITLE; TABLE OF CONTENTS. 

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

3 ‘‘Genetic Information Nondiscrimination Act of 2005’’. 

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

5 this Act is as follows: 

Sec. 1. Short title; table of contents. 

Sec. 2. Findings. 

TITLE I—GENETIC NONDISCRIMINATION IN HEALTH INSURANCE 

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

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

Sec. 103. Amendments to title XVIII of the Social Security Act relating to 

medigap. 

Sec. 104. Privacy and confidentiality. 

Sec. 105. Assuring coordination. 

Sec. 106. 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. 

6 SEC. 2. FINDINGS. 

7 Congress makes the following findings: 

8 (1) Deciphering the sequence of the human ge9 nome and other advances in genetics open major 

10 new opportunities for medical progress. New knowl11 edge about the genetic basis of illness will allow for 
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1 earlier detection of illnesses, often before symptoms 

2 have begun. Genetic testing can allow individuals to 

3 take steps to reduce the likelihood that they will con4 tract a particular disorder. New knowledge about ge5 netics may allow for the development of better thera6 pies that are more effective against disease or have 

7 fewer side effects than current treatments. These 

8 advances give rise to the potential misuse of genetic 

9 information to discriminate in health insurance and 

10 employment. 

11 (2) The early science of genetics became the 

12 basis of State laws that provided for the sterilization 

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

14 as mental retardation, mental disease, epilepsy, 

15 blindness, and hearing loss, among other conditions. 

16 The first sterilization law was enacted in the State 

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

18 adopted sterilization laws to ‘‘correct’’ apparent ge19 netic traits or tendencies. Many of these State laws 

20 have since been repealed, and many have been modi21 fied to include essential constitutional requirements 

22 of due process and equal protection. However, the 

23 current explosion in the science of genetics, and the 

24 history of sterilization laws by the States based on 
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1 early genetic science, compels Congressional action 

2 in this area. 

3 (3) Although genes are facially neutral markers, 

4 many genetic conditions and disorders are associated 

5 with particular racial and ethnic groups and gender. 

6 Because some genetic traits are most prevalent in 

7 particular groups, members of a particular group 

8 may be stigmatized or discriminated against as a re9 sult of that genetic information. This form of dis10 crimination was evident in the 1970s, which saw the 

11 advent of programs to screen and identify carriers of 

12 sickle cell anemia, a disease which afflicts African13 Americans. Once again, State legislatures began to 

14 enact discriminatory laws in the area, and in the 

15 early 1970s began mandating genetic screening of 

16 all African Americans for sickle cell anemia, leading 

17 to discrimination and unnecessary fear. To alleviate 

18 some of this stigma, Congress in 1972 passed the 

19 National Sickle Cell Anemia Control Act, which 

20 withholds Federal funding from States unless sickle 

21 cell testing is voluntary. 

22 (4) Congress has been informed of examples of 

23 genetic discrimination in the workplace. These in24 clude the use of pre-employment genetic screening at 

25 Lawrence Berkeley Laboratory, which led to a court 
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1 decision in favor of the employees in that case Nor2 man-Bloodsaw v. Lawrence Berkeley Laboratory 

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

4 clearly has a compelling public interest in relieving 

5 the fear of discrimination and in prohibiting its ac6 tual practice in employment and health insurance. 

7 (5) Federal law addressing genetic discrimina8 tion in health insurance and employment is incom9 plete in both the scope and depth of its protections. 

10 Moreover, while many States have enacted some type 

11 of genetic non-discrimination law, these laws vary 

12 widely with respect to their approach, application, 

13 and level of protection. Congress has collected sub14 stantial evidence that the American public and the 

15 medical community find the existing patchwork of 

16 State and Federal laws to be confusing and inad17 equate to protect them from discrimination. There18 fore Federal legislation establishing a national and 

19 uniform basic standard is necessary to fully protect 

20 the public from discrimination and allay their con21 cerns about the potential for discrimination, thereby 

22 allowing individuals to take advantage of genetic 

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

3 INSURANCE 

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

6 (a) PROHIBITION OF HEALTH DISCRIMINATION ON

7 THE BASIS OF GENETIC INFORMATION OR GENETIC

8 SERVICES.— 

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

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

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

17 (2) NO DISCRIMINATION IN GROUP PREMIUMS

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

19 of the Employee Retirement Income Security Act of 

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

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

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

2 BASED ON GENETIC INFORMATION.—For purposes 

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

6 not adjust premium or contribution amounts for a 

7 group on the basis of genetic information concerning 

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

9 individual (including information about a request for 

10 or receipt of genetic services by an individual or 

11 family member of such individual).’’. 

12 (b) LIMITATIONS ON GENETIC TESTING.—Section 

13 702 of the Employee Retirement Income Security Act of 

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

15 the following: 

16 ‘‘(c) GENETIC TESTING.— 

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

19 health insurance issuer offering health insurance 

20 coverage in connection with a group health plan, 

21 shall not request or require an individual or a family 

22 member of such individual to undergo a genetic test. 

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

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

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

4 that such individual or a family member of such 

5 individual undergo a genetic test; 

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

7 professional who is employed by or affiliated 

8 with a group health plan or a health insurance 

9 issuer and who is providing health care services 

10 to an individual as part of a bona fide wellness 

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

14 test; or 

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

17 a genetic test. 

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

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

20 group health plans and health insurance issuers without 

21 regard to section 732(a).’’. 

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

23 the Employee Retirement Income Security Act of 1974 

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

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

3 ‘‘(1) INJUNCTIVE RELIEF FOR IRREPARABLE

4 HARM.—With respect to any violation of subsection 

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

6 or beneficiary may seek relief under subsection 

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

10 evidence, that the exhaustion of such remedies would 

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

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

14 that are made in such case while an action under 

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

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

20 ‘‘(A) REINSTATEMENT OF BENEFITS

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

23 or beneficiary under a civil action under this 

24 section may include an administrative penalty 

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

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

4 ‘‘(i) the civil action was commenced 

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

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

7 such civil action was based constitutes a 

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

9 (c) of section 702. 

10 ‘‘(B) ADMINISTRATIVE PENALTY.— 

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

12 who fails to comply with the requirements 

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

14 section 702 with respect to a participant or 

15 beneficiary may, in an action commenced 

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

17 liable in the discretion of the court, for a 

18 penalty in the amount not more than $100 

19 for each day in the noncompliance period. 

20 ‘‘(ii) NONCOMPLIANCE PERIOD.—For 

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

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

24 failure described in clause (i) occurs; 

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

2 such failure is corrected. 

3 ‘‘(iii) PAYMENT TO PARTICIPANT OR

4 BENEFICIARY.—A penalty collected under 

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

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

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

10 the authority to impose a penalty on any failure 

11 of a group health plan to meet the requirements 

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

13 702. 

14 ‘‘(B) AMOUNT.— 

15 ‘‘(i) IN GENERAL.—The amount of 

16 the penalty imposed by subparagraph (A) 

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

20 ‘‘(ii) NONCOMPLIANCE PERIOD.—For 

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

23 any failure, the period— 

24 ‘‘(I) beginning on the date such 

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

2 failure is corrected. 

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

5 and (ii) of subparagraph (D): 

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

7 more failures with respect to an indi8 vidual— 

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

12 such violation; and 

13 ‘‘(II) which occurred or continued 

14 during the period involved; 

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

17 respect to such individual shall not be less 

18 than $2,500. 

19 ‘‘(ii) HIGHER MINIMUM PENALTY

20 WHERE VIOLATIONS ARE MORE THAN DE

21 MINIMIS.—To the extent violations for 

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

3 ‘‘(D) LIMITATIONS.— 

4 ‘‘(i) PENALTY NOT TO APPLY WHERE

5 FAILURE NOT DISCOVERED EXERCISING

6 REASONABLE DILIGENCE.—No penalty 

7 shall be imposed by subparagraph (A) on 

8 any failure during any period for which it 

9 is established to the satisfaction of the 

10 Secretary that the person otherwise liable 

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

13 known, that such failure existed. 

14 ‘‘(ii) PENALTY NOT TO APPLY TO

15 FAILURES CORRECTED WITHIN CERTAIN

16 PERIODS.—No penalty shall be imposed by 

17 subparagraph (A) on any failure if— 

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

21 ‘‘(II) such failure is corrected 

22 during the 30-day period beginning on 

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

2 known, that such failure existed. 

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

5 failures which are due to reasonable cause 

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

8 shall not exceed the amount equal to the 

9 lesser of— 

10 ‘‘(I) 10 percent of the aggregate 

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

14 group health plans; or 

15 ‘‘(II) $500,000. 

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

17 of a failure which is due to reasonable cause 

18 and not to willful neglect, the Secretary may 

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

21 of such penalty would be excessive relative to 

22 the failure involved.’’. 

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

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

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

2 member’ means with respect to an individual— 

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

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

5 including a child who is born to or placed for 

6 adoption with the individual; and 

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

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

10 ‘‘(6) GENETIC INFORMATION.— 

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

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

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

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

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

18 disorder in family members of the indi19 vidual. 

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

22 the sex or age of an individual. 

23 ‘‘(7) GENETIC TEST.— 

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

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

3 changes. 

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

5 test’ does not mean— 

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

8 mutations, or chromosomal changes; or 

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

12 condition that could reasonably be detected 

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

15 medicine involved. 

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

17 services’ means— 

18 ‘‘(A) a genetic test; 

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

20 interpreting, or assessing genetic information); 

21 or 

22 ‘‘(C) genetic education.’’. 

23 (e) REGULATIONS AND EFFECTIVE DATE.— 

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

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

2 format to carry out the amendments made by this 

3 section. 

4 (2) EFFECTIVE DATE.—The amendments made 

5 by this section shall apply with respect to group 

6 health plans for plan years beginning after the date 

7 that is 18 months after the date of enactment of 

8 this title. 

9 SEC. 102. AMENDMENTS TO THE PUBLIC HEALTH SERVICE 

10 ACT. 

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

13 (1) PROHIBITION OF HEALTH DISCRIMINATION

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

16 (A) NO ENROLLMENT RESTRICTION FOR

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

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

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

22 services by an individual or family member of 

23 such individual)’’. 

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

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

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

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

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

8 ‘‘(3) NO DISCRIMINATION IN GROUP PREMIUMS

9 BASED ON GENETIC INFORMATION.—For purposes 

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

13 not adjust premium or contribution amounts for a 

14 group on the basis of genetic information concerning 

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

16 individual (including information about a request for 

17 or receipt of genetic services by an individual or 

18 family member of such individual).’’. 

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

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

22 the following: 

23 ‘‘(c) GENETIC TESTING.— 

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

2 coverage in connection with a group health plan, 

3 shall not request or require an individual or a family 

4 member of such individual to undergo a genetic test. 

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

6 this part shall be construed to— 

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

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

10 that such individual or a family member of such 

11 individual undergo a genetic test; 

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

13 professional who is employed by or affiliated 

14 with a group health plan or a health insurance 

15 issuer and who is providing health care services 

16 to an individual as part of a bona fide wellness 

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

20 test; or 

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

23 a genetic test. 

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

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

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1 group health plans and health insurance issuers without 

2 regard to section 2721(a).’’. 

3 (3) REMEDIES AND ENFORCEMENT.—Section 

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

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

6 following: 

7 ‘‘(3) ENFORCEMENT AUTHORITY RELATING TO

8 GENETIC DISCRIMINATION.— 

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

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

12 provisions shall apply with respect to an action 

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

15 in connection with a group health plan, to meet 

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

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

18 ‘‘(B) AMOUNT.— 

19 ‘‘(i) IN GENERAL.—The amount of 

20 the penalty imposed under this paragraph 

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

24 ‘‘(ii) NONCOMPLIANCE PERIOD.—For 

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

2 any failure, the period— 

3 ‘‘(I) beginning on the date such 

4 failure first occurs; and 

5 ‘‘(II) ending on the date such 

6 failure is corrected. 

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

9 and (ii) of subparagraph (D): 

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

11 more failures with respect to an indi12 vidual— 

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

16 such violation; and 

17 ‘‘(II) which occurred or continued 

18 during the period involved; 

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

21 respect to such individual shall not be less 

22 than $2,500. 

23 ‘‘(ii) HIGHER MINIMUM PENALTY

24 WHERE VIOLATIONS ARE MORE THAN DE

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

6 ‘‘(D) LIMITATIONS.— 

7 ‘‘(i) PENALTY NOT TO APPLY WHERE

8 FAILURE NOT DISCOVERED EXERCISING

9 REASONABLE DILIGENCE.—No penalty 

10 shall be imposed by subparagraph (A) on 

11 any failure during any period for which it 

12 is established to the satisfaction of the 

13 Secretary that the person otherwise liable 

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

16 known, that such failure existed. 

17 ‘‘(ii) PENALTY NOT TO APPLY TO

18 FAILURES CORRECTED WITHIN CERTAIN

19 PERIODS.—No penalty shall be imposed by 

20 subparagraph (A) on any failure if— 

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

24 ‘‘(II) such failure is corrected 

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

4 known, that such failure existed. 

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

7 failures which are due to reasonable cause 

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

10 shall not exceed the amount equal to the 

11 lesser of— 

12 ‘‘(I) 10 percent of the aggregate 

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

16 group health plans; or 

17 ‘‘(II) $500,000. 

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

19 of a failure which is due to reasonable cause 

20 and not to willful neglect, the Secretary may 

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

23 of such penalty would be excessive relative to 

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

3 amended by adding at the end the following: 

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

5 member’ means with respect to an individual— 

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

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

8 including a child who is born to or placed for 

9 adoption with the individual; and 

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

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

13 ‘‘(16) GENETIC INFORMATION.— 

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

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

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

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

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

21 disorder in family members of the indi22 vidual. 

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

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

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

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

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

6 changes. 

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

8 test’ does not mean— 

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

11 mutations, or chromosomal changes; or 

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

15 condition that could reasonably be detected 

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

18 medicine involved. 

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

20 services’ means— 

21 ‘‘(A) a genetic test; 

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

23 interpreting, or assessing genetic information); 

24 or 

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

2 MARKET.— 

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

4 B of title XXVII of the Public Health Service Act 

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

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

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

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

11 THE BASIS OF GENETIC INFORMATION. 

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

13 CONDITION OF ELIGIBILITY.—A health insurance issuer 

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

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

20 of such individual). 

21 ‘‘(b) PROHIBITION ON GENETIC INFORMATION IN

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

24 shall not adjust premium or contribution amounts for an 

25 individual on the basis of genetic information concerning 
27 

•HR 1227 IH 

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

4 individual). 

5 ‘‘(c) GENETIC TESTING.— 

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

8 offering health insurance coverage in the individual 

9 market shall not request or require an individual or 

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

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

13 this part shall be construed to— 

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

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

17 that such individual or a family member of such 

18 individual undergo a genetic test; 

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

20 professional who is employed by or affiliated 

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

23 part of a bona fide wellness program to notify 

24 such individual of the availability of a genetic 
28

•HR 1227 IH 

1 test or to provide information to such individual 

2 regarding such genetic test; or 

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

5 a genetic test.’’. 

6 (2) REMEDIES AND ENFORCEMENT.—Section 

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

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

9 ‘‘(b) SECRETARIAL ENFORCEMENT AUTHORITY.—

10 The Secretary shall have the same authority in relation 

11 to enforcement of the provisions of this part with respect 

12 to issuers of health insurance coverage in the individual 

13 market in a State as the Secretary has under section 

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

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

17 to issuers of health insurance coverage in the small group 

18 market in the State.’’. 

19 (c) ELIMINATION OF OPTION OF NON-FEDERAL

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

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

23 U.S.C. 300gg–21(b)(2)) is amended—
29 

•HR 1227 IH 

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

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

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

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

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

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

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

10 section 2702 and the provisions of section 

11 2702(b) to the extent that such provisions 

12 apply to genetic information (or information 

13 about a request for or the receipt of genetic 

14 services by an individual or a family member of 

15 such individual).’’. 

16 (d) REGULATIONS AND EFFECTIVE DATE.— 

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

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

19 Labor and the Secretary of Health and Human 

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

22 amendments made by this section. 

23 (2) EFFECTIVE DATE.—The amendments made 

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

2 health insurance coverage offered in connection 

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

5 date of enactment of this title; and 

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

8 operated in the individual market after the date 

9 that is 18 months after the date of enactment 

10 of this title. 

11 SEC. 103. AMENDMENTS TO TITLE XVIII OF THE SOCIAL SE12 CURITY ACT RELATING TO MEDIGAP. 

13 (a) NONDISCRIMINATION.— 

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

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

16 amended by adding at the end the following: 

17 ‘‘(E)(i) An issuer of a medicare supple18 mental policy shall not deny or condition the 

19 issuance or effectiveness of the policy, and shall 

20 not discriminate in the pricing of the policy (in21 cluding the adjustment of premium rates) of an 

22 eligible individual on the basis of genetic infor23 mation concerning the individual (or informa24 tion about a request for, or the receipt of, ge-
31 

•HR 1227 IH 

1 netic services by such individual or family mem2 ber of such individual). 

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

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

5 information’ shall have the meanings given such 

6 terms in subsection (x).’’. 

7 (2) EFFECTIVE DATE.—The amendment made 

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

9 for policy years beginning after the date that is 18 

10 months after the date of enactment of this Act. 

11 (b) LIMITATIONS ON GENETIC TESTING.— 

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

13 Security Act (42 U.S.C. 1395ss) is amended by add14 ing at the end the following: 

15 ‘‘(x) LIMITATIONS ON GENETIC TESTING.— 

16 ‘‘(1) GENETIC TESTING.— 

17 ‘‘(A) LIMITATION ON REQUESTING OR RE18 QUIRING GENETIC TESTING.—An issuer of a 

19 medicare supplemental policy shall not request 

20 or require an individual or a family member of 

21 such individual to undergo a genetic test. 

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

23 in this title shall be construed to— 

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

25 care professional who is providing health 
32 

•HR 1227 IH 

1 care services with respect to an individual 

2 to request that such individual or a family 

3 member of such individual undergo a ge4 netic test; 

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

6 care professional who is employed by or af7 filiated with an issuer of a medicare sup8 plemental policy and who is providing 

9 health care services to an individual as 

10 part of a bona fide wellness program to no11 tify such individual of the availability of a 

12 genetic test or to provide information to 

13 such individual regarding such genetic test; 

14 or 

15 ‘‘(iii) authorize or permit a health 

16 care professional to require that an indi17 vidual undergo a genetic test. 

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

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

20 member’ means with respect to an individual— 

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

22 ‘‘(ii) a dependent child of the indi23 vidual, including a child who is born to or 

24 placed for adoption with the individual; or 
33 

•HR 1227 IH 

1 ‘‘(iii) any other individuals related by 

2 blood to the individual or to the spouse or 

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

4 ‘‘(B) GENETIC INFORMATION.— 

5 ‘‘(i) IN GENERAL.—Except as pro6 vided in clause (ii), the term ‘genetic infor7 mation’ means information about— 

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

9 ‘‘(II) the genetic tests of family 

10 members of the individual; or 

11 ‘‘(III) the occurrence of a disease 

12 or disorder in family members of the 

13 individual. 

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

15 information’ shall not include information 

16 about the sex or age of an individual. 

17 ‘‘(C) GENETIC TEST.— 

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

19 test’ means an analysis of human DNA, 

20 RNA, chromosomes, proteins, or metabo21 lites, that detects genotypes, mutations, or 

22 chromosomal changes. 

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

24 test’ does not mean— 
34 

•HR 1227 IH 

1 ‘‘(I) an analysis of proteins or 

2 metabolites that does not detect 

3 genotypes, mutations, or chromosomal 

4 changes; or 

5 ‘‘(II) an analysis of proteins or 

6 metabolites that is directly related to 

7 a manifested disease, disorder, or 

8 pathological condition that could rea9 sonably be detected by a health care 

10 professional with appropriate training 

11 and expertise in the field of medicine 

12 involved. 

13 ‘‘(D) GENETIC SERVICES.—The term ‘ge14 netic services’ means— 

15 ‘‘(i) a genetic test; 

16 ‘‘(ii) genetic counseling (such as ob17 taining, interpreting, or assessing genetic 

18 information); or 

19 ‘‘(iii) genetic education. 

20 ‘‘(E) ISSUER OF A MEDICARE SUPPLE21 MENTAL POLICY.—The term ‘issuer of a medi22 care supplemental policy’ includes a third-party 

23 administrator or other person acting for or on 

24 behalf of such issuer.’’. 
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•HR 1227 IH 

1 (2) CONFORMING AMENDMENT.—Section 

2 1882(o) of the Social Security Act (42 U.S.C. 

3 1395ss(o)) is amended by adding at the end the fol4 lowing: 

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

6 policy complies with subsection (s)(2)(E) and sub7 section (x).’’. 

8 (3) EFFECTIVE DATE.—The amendments made 

9 by this subsection shall apply with respect to an 

10 issuer of a medicare supplemental policy for policy 

11 years beginning on or after the date that is 18 

12 months after the date of enactment of this Act. 

13 (c) TRANSITION PROVISIONS.— 

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

15 and Human Services identifies a State as requiring 

16 a change to its statutes or regulations to conform its 

17 regulatory program to the changes made by this sec18 tion, the State regulatory program shall not be con19 sidered to be out of compliance with the require20 ments of section 1882 of the Social Security Act due 

21 solely to failure to make such change until the date 

22 specified in paragraph (4). 

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

24 30, 2006, the National Association of Insurance 

25 Commissioners (in this subsection referred to as the 
36 

•HR 1227 IH 

1 ‘‘NAIC’’) modifies its NAIC Model Regulation relat2 ing to section 1882 of the Social Security Act (re3 ferred to in such section as the 1991 NAIC Model 

4 Regulation, as subsequently modified) to conform to 

5 the amendments made by this section, such revised 

6 regulation incorporating the modifications shall be 

7 considered to be the applicable NAIC model regula8 tion (including the revised NAIC model regulation 

9 and the 1991 NAIC Model Regulation) for the pur10 poses of such section. 

11 (3) SECRETARY STANDARDS.—If the NAIC 

12 does not make the modifications described in para13 graph (2) within the period specified in such para14 graph, the Secretary of Health and Human Services 

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

16 modifications described in such paragraph and such 

17 revised regulation incorporating the modifications 

18 shall be considered to be the appropriate regulation 

19 for the purposes of such section. 

20 (4) DATE SPECIFIED.— 

21 (A) IN GENERAL.—Subject to subpara22 graph (B), the date specified in this paragraph 

23 for a State is the earlier of— 

24 (i) the date the State changes its stat25 utes or regulations to conform its regu-
37 

•HR 1227 IH 

1 latory program to the changes made by 

2 this section, or 

3 (ii) October 1, 2006. 

4 (B) ADDITIONAL LEGISLATIVE ACTION RE5 QUIRED.—In the case of a State which the Sec6 retary identifies as— 

7 (i) requiring State legislation (other 

8 than legislation appropriating funds) to 

9 conform its regulatory program to the 

10 changes made in this section, but 

11 (ii) having a legislature which is not 

12 scheduled to meet in 2006 in a legislative 

13 session in which such legislation may be 

14 considered, the date specified in this para15 graph is the first day of the first calendar 

16 quarter beginning after the close of the 

17 first legislative session of the State legisla18 ture that begins on or after July 1, 2006. 

19 For purposes of the previous sentence, in 

20 the case of a State that has a 2-year legis21 lative session, each year of such session 

22 shall be deemed to be a separate regular 

23 session of the State legislature. 
38 

•HR 1227 IH 

1 SEC. 104. PRIVACY AND CONFIDENTIALITY. 

2 (a) APPLICABILITY.—Except as provided in sub3 section (d), the provisions of this section shall apply to 

4 group health plans, health insurance issuers (including 

5 issuers in connection with group health plans or individual 

6 health coverage), and issuers of medicare supplemental 

7 policies, without regard to— 

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

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

10 (2) section 2721(a) of the Public Health Serv11 ice Act (42 U.S.C. 300gg–21(a)); and 

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

13 Code of 1986. 

14 (b) COMPLIANCE WITH CERTAIN CONFIDENTIALITY

15 STANDARDS WITH RESPECT TO GENETIC INFORMA16 TION.— 

17 (1) IN GENERAL.—The regulations promulgated 

18 by the Secretary of Health and Human Services 

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

20 (42 U.S.C. 1320d et seq.) and section 264 of the 

21 Health Insurance Portability and Accountability Act 

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

23 use or disclosure of genetic information. 

24 (2) PROHIBITION ON UNDERWRITING AND PRE25 MIUM RATING.—Notwithstanding paragraph (1), a 

26 group health plan, a health insurance issuer, or 
39 

•HR 1227 IH 

1 issuer of a medicare supplemental policy shall not 

2 use or disclose genetic information (including infor3 mation about a request for or a receipt of genetic 

4 services by an individual or family member of such 

5 individual) for purposes of underwriting, determina6 tions of eligibility to enroll, premium rating, or the 

7 creation, renewal or replacement of a plan, contract 

8 or coverage for health insurance or health benefits. 

9 (c) PROHIBITION ON COLLECTION OF GENETIC IN10 FORMATION.— 

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

12 insurance issuer, or issuer of a medicare supple13 mental policy shall not request, require, or purchase 

14 genetic information (including information about a 

15 request for or a receipt of genetic services by an in16 dividual or family member of such individual) for 

17 purposes of underwriting, determinations of eligi18 bility to enroll, premium rating, or the creation, re19 newal or replacement of a plan, contract or coverage 

20 for health insurance or health benefits. 

21 (2) LIMITATION RELATING TO THE COLLEC22 TION OF GENETIC INFORMATION PRIOR TO ENROLL23 MENT.—A group health plan, health insurance 

24 issuer, or issuer of a medicare supplemental policy 

25 shall not request, require, or purchase genetic infor-
40 

•HR 1227 IH 

1 mation (including information about a request for or 

2 a receipt of genetic services by an individual or fam3 ily member of such individual) concerning a partici4 pant, beneficiary, or enrollee prior to the enrollment, 

5 and in connection with such enrollment, of such indi6 vidual under the plan, coverage, or policy. 

7 (3) INCIDENTAL COLLECTION.—Where a group 

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

9 medicare supplemental policy obtains genetic infor10 mation incidental to the requesting, requiring, or 

11 purchasing of other information concerning a partic12 ipant, beneficiary, or enrollee, such request, require13 ment, or purchase shall not be considered a violation 

14 of this subsection if— 

15 (A) such request, requirement, or purchase 

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

17 (B) any genetic information (including in18 formation about a request for or receipt of ge19 netic services) requested, required, or purchased 

20 is not used or disclosed in violation of sub21 section (b). 

22 (d) APPLICATION OF CONFIDENTIALITY STAND23 ARDS.—The provisions of subsections (b) and (c) shall not 

24 apply— 
41 

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1 (1) to group health plans, health insurance 

2 issuers, or issuers of medicare supplemental policies 

3 that are not otherwise covered under the regulations 

4 promulgated by the Secretary of Health and Human 

5 Services under part C of title XI of the Social Secu6 rity Act (42 U.S.C. 1320d et seq.) and section 264 

7 of the Health Insurance Portability and Account8 ability Act of 1996 (42 U.S.C. 1320d–2 note); and 

9 (2) to genetic information that is not considered 

10 to be individually-identifiable health information 

11 under the regulations promulgated by the Secretary 

12 of Health and Human Services under part C of title 

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

14 seq.) and section 264 of the Health Insurance Port15 ability and Accountability Act of 1996 (42 U.S.C. 

16 1320d–2 note). 

17 (e) ENFORCEMENT.—A group health plan, health in18 surance issuer, or issuer of a medicare supplemental policy 

19 that violates a provision of this section shall be subject 

20 to the penalties described in sections 1176 and 1177 of 

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

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

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

24 Act. 

25 (f) PREEMPTION.— 
42 

•HR 1227 IH 

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

2 under this section or a regulation promulgated under 

3 this section shall supersede any contrary provision of 

4 State law unless such provision of State law imposes 

5 requirements, standards, or implementation speci6 fications that are more stringent than the require7 ments, standards, or implementation specifications 

8 imposed under this section or such regulations. No 

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

10 a State law that is more stringent shall be pre11 empted by this section. 

12 (2) RULE OF CONSTRUCTION.—Nothing in 

13 paragraph (1) shall be construed to establish a pen14 alty, remedy, or cause of action under State law if 

15 such penalty, remedy, or cause of action is not oth16 erwise available under such State law. 

17 (g) COORDINATION WITH PRIVACY REGULATIONS.— 

18 The Secretary shall implement and administer this section 

19 in a manner that is consistent with the implementation 

20 and administration by the Secretary of the regulations 

21 promulgated by the Secretary of Health and Human Serv22 ices under part C of title XI of the Social Security Act 

23 (42 U.S.C. 1320d et seq.) and section 264 of the Health 

24 Insurance Portability and Accountability Act of 1996 (42 

25 U.S.C. 1320d–2 note). 
43 

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1 (h) DEFINITIONS.—In this section: 

2 (1) GENETIC INFORMATION; GENETIC SERV3 ICES.—The terms ‘‘family member’’, ‘‘genetic infor4 mation’’, ‘‘genetic services’’, and ‘‘genetic test’’ have 

5 the meanings given such terms in section 2791 of 

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

7 91), as amended by this Act. 

8 (2) GROUP HEALTH PLAN; HEALTH INSURANCE

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

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

11 and issuers that are covered under the regulations 

12 described in subsection (d)(1). 

13 (3) ISSUER OF A MEDICARE SUPPLEMENTAL

14 POLICY.—The term ‘‘issuer of a medicare supple15 mental policy’’ means an issuer described in section 

16 1882 of the Social Security Act (42 insert 1395ss). 

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

18 the Secretary of Health and Human Services. 

19 SEC. 105. ASSURING COORDINATION. 

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

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

22 and Human Services, and the Secretary of Labor shall en23 sure, through the execution of an interagency memo24 randum of understanding among such Secretaries, that— 
44 

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1 (1) regulations, rulings, and interpretations 

2 issued by such Secretaries relating to the same mat3 ter over which two or more such Secretaries have re4 sponsibility under this title (and the amendments 

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

6 the same effect at all times; and 

7 (2) coordination of policies relating to enforcing 

8 the same requirements through such Secretaries in 

9 order to have a coordinated enforcement strategy 

10 that avoids duplication of enforcement efforts and 

11 assigns priorities in enforcement. 

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

13 of Health and Human Services has the sole authority to 

14 promulgate regulations to implement section 104. 

15 SEC. 106. REGULATIONS; EFFECTIVE DATE. 

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

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

18 the Secretary of Health and Human Services, and the Sec19 retary of the Treasury shall issue final regulations in an 

20 accessible format to carry out this title. 

21 (b) EFFECTIVE DATE.—Except as provided in sec22 tion 103, the amendments made by this title shall take 

23 effect on the date that is 18 months after the date of en24 actment of this Act. 
45 

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1 TITLE II—PROHIBITING EM2 PLOYMENT DISCRIMINATION 

3 ON THE BASIS OF GENETIC 

4 INFORMATION 

5 SEC. 201. DEFINITIONS. 

6 In this title: 

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

8 means the Equal Employment Opportunity Commis9 sion as created by section 705 of the Civil Rights 

10 Act of 1964 (42 U.S.C. 2000e–4). 

11 (2) EMPLOYEE; EMPLOYER; EMPLOYMENT

12 AGENCY; LABOR ORGANIZATION; MEMBER.— 

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

14 means— 

15 (i) an employee (including an appli16 cant), as defined in section 701(f) of the 

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

18 2000e(f)); 

19 (ii) a State employee (including an ap20 plicant) described in section 304(a) of the 

21 Government Employee Rights Act of 1991 

22 (42 U.S.C. 2000e–16c(a)); 

23 (iii) a covered employee (including an 

24 applicant), as defined in section 101 of the 
46 

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1 Congressional Accountability Act of 1995 

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

3 (iv) a covered employee (including an 

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

5 title 3, United States Code; or 

6 (v) an employee or applicant to which 

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

8 1964 (42 U.S.C. 2000e–16(a)) applies. 

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

10 means— 

11 (i) an employer (as defined in section 

12 701(b) of the Civil Rights Act of 1964 (42 

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

14 (ii) an entity employing a State em15 ployee described in section 304(a) of the 

16 Government Employee Rights Act of 1991; 

17 (iii) an employing office, as defined in 

18 section 101 of the Congressional Account19 ability Act of 1995; 

20 (iv) an employing office, as defined in 

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

22 Code; or 

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

24 of the Civil Rights Act of 1964 applies. 
47 

•HR 1227 IH 

1 (C) EMPLOYMENT AGENCY; LABOR ORGA2 NIZATION.—The terms ‘‘employment agency’’ 

3 and ‘‘labor organization’’ have the meanings 

4 given the terms in section 701 of the Civil 

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

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

7 respect to a labor organization, includes an ap8 plicant for membership in a labor organization. 

9 (3) FAMILY MEMBER.—The term ‘‘family mem10 ber’’ means with respect to an individual— 

11 (A) the spouse of the individual; 

12 (B) a dependent child of the individual, in13 cluding a child who is born to or placed for 

14 adoption with the individual; and 

15 (C) all other individuals related by blood to 

16 the individual or the spouse or child described 

17 in subparagraph (A) or (B). 

18 (4) GENETIC INFORMATION.— 

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

20 subparagraph (B), the term ‘‘genetic informa21 tion’’ means information about— 

22 (i) an individual’s genetic tests; 

23 (ii) the genetic tests of family mem24 bers of the individual; or 
48 

•HR 1227 IH 

1 (iii) the occurrence of a disease or dis2 order in family members of the individual. 

3 (B) EXCEPTIONS.—The term ‘‘genetic in4 formation’’ shall not include information about 

5 the sex or age of an individual. 

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

7 monitoring’’ means the periodic examination of em8 ployees to evaluate acquired modifications to their 

9 genetic material, such as chromosomal damage or 

10 evidence of increased occurrence of mutations, that 

11 may have developed in the course of employment due 

12 to exposure to toxic substances in the workplace, in 

13 order to identify, evaluate, and respond to the ef14 fects of or control adverse environmental exposures 

15 in the workplace. 

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

17 services’’ means— 

18 (A) a genetic test; 

19 (B) genetic counseling (such as obtaining, 

20 interpreting or assessing genetic information); 

21 or 

22 (C) genetic education. 

23 (7) GENETIC TEST.— 

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

25 test’’ means the analysis of human DNA, RNA, 
49 

•HR 1227 IH 

1 chromosomes, proteins, or metabolites, that de2 tects genotypes, mutations, or chromosomal 

3 changes. 

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

5 does not mean an analysis of proteins or me6 tabolites that does not detect genotypes, 

7 mutations, or chromosomal changes. 

8 SEC. 202. EMPLOYER PRACTICES. 

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

10 unlawful employment practice for an employer— 

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

12 employee, or otherwise to discriminate against any 

13 employee with respect to the compensation, terms, 

14 conditions, or privileges of employment of the em15 ployee, because of genetic information with respect 

16 to the employee (or information about a request for 

17 or the receipt of genetic services by such employee 

18 or family member of such employee); or 

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

20 of the employer in any way that would deprive or 

21 tend to deprive any employee of employment oppor22 tunities or otherwise adversely affect the status of 

23 the employee as an employee, because of genetic in24 formation with respect to the employee (or informa25 tion about a request for or the receipt of genetic 
50 

•HR 1227 IH 

1 services by such employee or family member of such 

2 employee). 

3 (b) ACQUISITION OF GENETIC INFORMATION.—It 

4 shall be an unlawful employment practice for an employer 

5 to request, require, or purchase genetic information with 

6 respect to an employee or a family member of the em7 ployee (or information about a request for the receipt of 

8 genetic services by such employee or a family member of 

9 such employee) except— 

10 (1) where an employer inadvertently requests or 

11 requires family medical history of the employee or 

12 family member of the employee; 

13 (2) where— 

14 (A) health or genetic services are offered 

15 by the employer, including such services offered 

16 as part of a bona fide wellness program; 

17 (B) the employee provides prior, knowing, 

18 voluntary, and written authorization; 

19 (C) only the employee (or family member 

20 if the family member is receiving genetic serv21 ices) and the licensed health care professional 

22 or board certified genetic counselor involved in 

23 providing such services receive individually iden24 tifiable information concerning the results of 

25 such services; and 
51 

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1 (D) any individually identifiable genetic in2 formation provided under subparagraph (C) in 

3 connection with the services provided under 

4 subparagraph (A) is only available for purposes 

5 of such services and shall not be disclosed to 

6 the employer except in aggregate terms that do 

7 not disclose the identity of specific employees; 

8 (3) where an employer requests or requires 

9 family medical history from the employee to comply 

10 with the certification provisions of section 103 of the 

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

12 2613) or such requirements under State family and 

13 medical leave laws; 

14 (4) where an employer purchases documents 

15 that are commercially and publicly available (includ16 ing newspapers, magazines, periodicals, and books, 

17 but not including medical databases or court 

18 records) that include family medical history; or 

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

20 for genetic monitoring of the biological effects of 

21 toxic substances in the workplace, but only if— 

22 (A) the employer provides written notice of 

23 the genetic monitoring to the employee; 

24 (B)(i) the employee provides prior, know25 ing, voluntary, and written authorization; or 
52 

•HR 1227 IH 

1 (ii) the genetic monitoring is required by 

2 Federal or State law; 

3 (C) the employee is informed of individual 

4 monitoring results; 

5 (D) the monitoring is in compliance with— 

6 (i) any Federal genetic monitoring 

7 regulations, including any such regulations 

8 that may be promulgated by the Secretary 

9 of Labor pursuant to the Occupational 

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

11 651 et seq.), the Federal Mine Safety and 

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

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

14 (42 U.S.C. 2011 et seq.); or 

15 (ii) State genetic monitoring regula16 tions, in the case of a State that is imple17 menting genetic monitoring regulations 

18 under the authority of the Occupational 

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

20 651 et seq.); and 

21 (E) the employer, excluding any licensed 

22 health care professional or board certified ge23 netic counselor that is involved in the genetic 

24 monitoring program, receives the results of the 
53 

•HR 1227 IH 

1 monitoring only in aggregate terms that do not 

2 disclose the identity of specific employees; 

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

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

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

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

7 (a) or treated or disclosed in a manner that violates sec8 tion 206. 

9 SEC. 203. EMPLOYMENT AGENCY PRACTICES. 

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

11 unlawful employment practice for an employment agen12 cy— 

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

14 otherwise to discriminate against, any individual be15 cause of genetic information with respect to the indi16 vidual (or information about a request for or the re17 ceipt of genetic services by such individual or family 

18 member of such individual); 

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

20 fail or refuse to refer for employment any individual 

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

22 individual of employment opportunities, or otherwise 

23 adversely affect the status of the individual as an 

24 employee, because of genetic information with re25 spect to the individual (or information about a re-
54 

•HR 1227 IH 

1 quest for or the receipt of genetic services by such 

2 individual or family member of such individual); or 

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

4 discriminate against an individual in violation of this 

5 title. 

6 (b) ACQUISITION OF GENETIC INFORMATION.—It 

7 shall be an unlawful employment practice for an employ8 ment agency to request, require, or purchase genetic infor9 mation with respect to an individual or a family member 

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

11 receipt of genetic services by such individual or a family 

12 member of such individual) except— 

13 (1) where an employment agency inadvertently 

14 requests or requires family medical history of the in15 dividual or family member of the individual; 

16 (2) where— 

17 (A) health or genetic services are offered 

18 by the employment agency, including such serv19 ices offered as part of a bona fide wellness pro20 gram; 

21 (B) the individual provides prior, knowing, 

22 voluntary, and written authorization; 

23 (C) only the individual (or family member 

24 if the family member is receiving genetic serv25 ices) and the licensed health care professional 
55 

•HR 1227 IH 

1 or board certified genetic counselor involved in 

2 providing such services receive individually iden3 tifiable information concerning the results of 

4 such services; and 

5 (D) any individually identifiable genetic in6 formation provided under subparagraph (C) in 

7 connection with the services provided under 

8 subparagraph (A) is only available for purposes 

9 of such services and shall not be disclosed to 

10 the employment agency except in aggregate 

11 terms that do not disclose the identity of spe12 cific individuals; 

13 (3) where an employment agency requests or re14 quires family medical history from the individual to 

15 comply with the certification provisions of section 

16 103 of the Family and Medical Leave Act of 1993 

17 (29 U.S.C. 2613) or such requirements under State 

18 family and medical leave laws; 

19 (4) where an employment agency purchases 

20 documents that are commercially and publicly avail21 able (including newspapers, magazines, periodicals, 

22 and books, but not including medical databases or 

23 court records) that include family medical history; or 
56 

•HR 1227 IH 

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

2 for genetic monitoring of the biological effects of 

3 toxic substances in the workplace, but only if— 

4 (A) the employment agency provides writ5 ten notice of the genetic monitoring to the indi6 vidual; 

7 (B)(i) the individual provides prior, know8 ing, voluntary, and written authorization; or 

9 (ii) the genetic monitoring is required by 

10 Federal or State law; 

11 (C) the individual is informed of individual 

12 monitoring results; 

13 (D) the monitoring is in compliance with— 

14 (i) any Federal genetic monitoring 

15 regulations, including any such regulations 

16 that may be promulgated by the Secretary 

17 of Labor pursuant to the Occupational 

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

19 651 et seq.), the Federal Mine Safety and 

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

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

22 (42 U.S.C. 2011 et seq.); or 

23 (ii) State genetic monitoring regula24 tions, in the case of a State that is imple25 menting genetic monitoring regulations 
57 

•HR 1227 IH 

1 under the authority of the Occupational 

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

3 651 et seq.); and 

4 (E) the employment agency, excluding any 

5 licensed health care professional or board cer6 tified genetic counselor that is involved in the 

7 genetic monitoring program, receives the results 

8 of the monitoring only in aggregate terms that 

9 do not disclose the identity of specific individ10 uals; 

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

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

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

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

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

17 SEC. 204. LABOR ORGANIZATION PRACTICES. 

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

19 unlawful employment practice for a labor organization— 

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

21 of the organization, or otherwise to discriminate 

22 against, any member because of genetic information 

23 with respect to the member (or information about a 

24 request for or the receipt of genetic services by such 

25 member or family member of such member); 
58 

•HR 1227 IH 

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

2 of the organization, or fail or refuse to refer for em3 ployment any member, in any way that would de4 prive or tend to deprive any member of employment 

5 opportunities, or otherwise adversely affect the sta6 tus of the member as an employee, because of ge7 netic information with respect to the member (or in8 formation about a request for or the receipt of ge9 netic services by such member or family member of 

10 such member); or 

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

12 discriminate against a member in violation of this 

13 title. 

14 (b) ACQUISITION OF GENETIC INFORMATION.—It 

15 shall be an unlawful employment practice for a labor orga16 nization to request, require, or purchase genetic informa17 tion with respect to a member or a family member of the 

18 member (or information about a request for the receipt 

19 of genetic services by such member or a family member 

20 of such member) except— 

21 (1) where a labor organization inadvertently re22 quests or requires family medical history of the 

23 member or family member of the member; 

24 (2) where— 
59 

•HR 1227 IH 

1 (A) health or genetic services are offered 

2 by the labor organization, including such serv3 ices offered as part of a bona fide wellness pro4 gram; 

5 (B) the member provides prior, knowing, 

6 voluntary, and written authorization; 

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

8 the family member is receiving genetic services) 

9 and the licensed health care professional or 

10 board certified genetic counselor involved in 

11 providing such services receive individually iden12 tifiable information concerning the results of 

13 such services; and 

14 (D) any individually identifiable genetic in15 formation provided under subparagraph (C) in 

16 connection with the services provided under 

17 subparagraph (A) is only available for purposes 

18 of such services and shall not be disclosed to 

19 the labor organization except in aggregate 

20 terms that do not disclose the identity of spe21 cific members; 

22 (3) where a labor organization requests or re23 quires family medical history from the members to 

24 comply with the certification provisions of section 

25 103 of the Family and Medical Leave Act of 1993 
60 

•HR 1227 IH 

1 (29 U.S.C. 2613) or such requirements under State 

2 family and medical leave laws; 

3 (4) where a labor organization purchases docu4 ments that are commercially and publicly available 

5 (including newspapers, magazines, periodicals, and 

6 books, but not including medical databases or court 

7 records) that include family medical history; or 

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

9 for genetic monitoring of the biological effects of 

10 toxic substances in the workplace, but only if— 

11 (A) the labor organization provides written 

12 notice of the genetic monitoring to the member; 

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

14 voluntary, and written authorization; or 

15 (ii) the genetic monitoring is required by 

16 Federal or State law; 

17 (C) the member is informed of individual 

18 monitoring results; 

19 (D) the monitoring is in compliance with— 

20 (i) any Federal genetic monitoring 

21 regulations, including any such regulations 

22 that may be promulgated by the Secretary 

23 of Labor pursuant to the Occupational 

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

25 651 et seq.), the Federal Mine Safety and 
61 

•HR 1227 IH 

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

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

3 (42 U.S.C. 2011 et seq.); or 

4 (ii) State genetic monitoring regula5 tions, in the case of a State that is imple6 menting genetic monitoring regulations 

7 under the authority of the Occupational 

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

9 651 et seq.); and 

10 (E) the labor organization, excluding any 

11 licensed health care professional or board cer12 tified genetic counselor that is involved in the 

13 genetic monitoring program, receives the results 

14 of the monitoring only in aggregate terms that 

15 do not disclose the identity of specific members; 

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

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

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

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

20 (a) or treated or disclosed in a manner that violates sec21 tion 206. 

22 SEC. 205. TRAINING PROGRAMS. 

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

24 unlawful employment practice for any employer, labor or25 ganization, or joint labor-management committee control-
62 

•HR 1227 IH 

1 ling apprenticeship or other training or retraining, includ2 ing on-the-job training programs— 

3 (1) to discriminate against any individual be4 cause of genetic information with respect to the indi5 vidual (or information about a request for or the re6 ceipt of genetic services by such individual or a fam7 ily member of such individual) in admission to, or 

8 employment in, any program established to provide 

9 apprenticeship or other training or retraining; 

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

11 for or participants in such apprenticeship or other 

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

13 employment any individual, in any way that would 

14 deprive or tend to deprive any individual of employ15 ment opportunities, or otherwise adversely affect the 

16 status of the individual as an employee, because of 

17 genetic information with respect to the individual (or 

18 information about a request for or receipt of genetic 

19 services by such individual or family member of such 

20 individual); or 

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

22 discriminate against an applicant for or a partici23 pant in such apprenticeship or other training or re24 training in violation of this title. 
63 

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1 (b) ACQUISITION OF GENETIC INFORMATION.—It 

2 shall be an unlawful employment practice for an employer, 

3 labor organization, or joint labor-management committee 

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

5 genetic information with respect to an individual or a fam6 ily member of the individual (or information about a re7 quest for the receipt of genetic services by such individual 

8 or a family member of such individual) except— 

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

10 joint labor-management committee inadvertently re11 quests or requires family medical history of the indi12 vidual or family member of the individual; 

13 (2) where— 

14 (A) health or genetic services are offered 

15 by the employer, labor organization, or joint 

16 labor-management committee, including such 

17 services offered as part of a bona fide wellness 

18 program; 

19 (B) the individual provides prior, knowing, 

20 voluntary, and written authorization; 

21 (C) only the individual (or family member 

22 if the family member is receiving genetic serv23 ices) and the licensed health care professional 

24 or board certified genetic counselor involved in 

25 providing such services receive individually iden-
64 

•HR 1227 IH 

1 tifiable information concerning the results of 

2 such services; 

3 (D) any individually identifiable genetic in4 formation provided under subparagraph (C) in 

5 connection with the services provided under 

6 subparagraph (A) is only available for purposes 

7 of such services and shall not be disclosed to 

8 the employer, labor organization, or joint labor9 management committee except in aggregate 

10 terms that do not disclose the identity of spe11 cific individuals; 

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

13 joint labor-management committee requests or re14 quires family medical history from the individual to 

15 comply with the certification provisions of section 

16 103 of the Family and Medical Leave Act of 1993 

17 (29 U.S.C. 2613) or such requirements under State 

18 family and medical leave laws; 

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

20 joint labor-management committee purchases docu21 ments that are commercially and publicly available 

22 (including newspapers, magazines, periodicals, and 

23 books, but not including medical databases or court 

24 records) that include family medical history; or 
65 

•HR 1227 IH 

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

2 for genetic monitoring of the biological effects of 

3 toxic substances in the workplace, but only if— 

4 (A) the employer, labor organization, or 

5 joint labor-management committee provides 

6 written notice of the genetic monitoring to the 

7 individual; 

8 (B)(i) the individual provides prior, know9 ing, voluntary, and written authorization; or 

10 (ii) the genetic monitoring is required by 

11 Federal or State law; 

12 (C) the individual is informed of individual 

13 monitoring results; 

14 (D) the monitoring is in compliance with— 

15 (i) any Federal genetic monitoring 

16 regulations, including any such regulations 

17 that may be promulgated by the Secretary 

18 of Labor pursuant to the Occupational 

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

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

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

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

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

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

•HR 1227 IH 

1 menting genetic monitoring regulations 

2 under the authority of the Occupational 

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

4 651 et seq.); and 

5 (E) the employer, labor organization, or 

6 joint labor-management committee, excluding 

7 any licensed health care professional or board 

8 certified genetic counselor that is involved in 

9 the genetic monitoring program, receives the re10 sults of the monitoring only in aggregate terms 

11 that do not disclose the identity of specific indi12 viduals; 

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

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

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

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

17 (a) or treated or disclosed in a manner that violates sec18 tion 206. 

19 SEC. 206. CONFIDENTIALITY OF GENETIC INFORMATION. 

20 (a) TREATMENT OF INFORMATION AS PART OF CON21 FIDENTIAL MEDICAL RECORD.—If an employer, employ22 ment agency, labor organization, or joint labor-manage23 ment committee possesses genetic information about an 

24 employee or member (or information about a request for 

25 or receipt of genetic services by such employee or member 
67 

•HR 1227 IH 

1 or family member of such employee or member), such in2 formation shall be maintained on separate forms and in 

3 separate medical files and be treated as a confidential 

4 medical record of the employee or member. 

5 (b) LIMITATION ON DISCLOSURE.—An employer, em6 ployment agency, labor organization, or joint labor-man7 agement committee shall not disclose genetic information 

8 concerning an employee or member (or information about 

9 a request for or receipt of genetic services by such em10 ployee or member or family member of such employee or 

11 member) except— 

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

13 family member is receiving the genetic services) or 

14 member of a labor organization at the request of the 

15 employee or member of such organization; 

16 (2) to an occupational or other health re17 searcher if the research is conducted in compliance 

18 with the regulations and protections provided for 

19 under part 46 of title 45, Code of Federal Regula20 tions; 

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

22 that— 

23 (A) the employer, employment agency, 

24 labor organization, or joint labor-management 
68 

•HR 1227 IH 

1 committee may disclose only the genetic infor2 mation expressly authorized by such order; and 

3 (B) if the court order was secured without 

4 the knowledge of the employee or member to 

5 whom the information refers, the employer, em6 ployment agency, labor organization, or joint 

7 labor-management committee shall provide the 

8 employee or member with adequate notice to 

9 challenge the court order; 

10 (4) to government officials who are inves11 tigating compliance with this title if the information 

12 is relevant to the investigation; or 

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

14 in connection with the employee’s compliance with 

15 the certification provisions of section 103 of the 

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

17 2613) or such requirements under State family and 

18 medical leave laws. 

19 SEC. 207. REMEDIES AND ENFORCEMENT. 

20 (a) EMPLOYEES COVERED BY TITLE VII OF THE

21 CIVIL RIGHTS ACT OF 1964.— 

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

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

24 710, and 711 of the Civil Rights Act of 1964 (42 

25 U.S.C. 2000e–4 et seq.) to the Commission, the At-
69 

•HR 1227 IH 

1 torney General, or any person, alleging a violation of 

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

3 be the powers, remedies, and procedures this title 

4 provides to the Commission, the Attorney General, 

5 or any person, respectively, alleging an unlawful em6 ployment practice in violation of this title against an 

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

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

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

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

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

12 1988), shall be powers, remedies, and procedures 

13 this title provides to the Commission, the Attorney 

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

15 (3) DAMAGES.—The powers, remedies, and pro16 cedures provided in section 1977A of the Revised 

17 Statutes (42 U.S.C. 1981a), including the limita18 tions contained in subsection (b)(3) of such section 

19 1977A, shall be powers, remedies, and procedures 

20 this title provides to the Commission, the Attorney 

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

22 an employment practice specifically excluded from 

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

24 Statutes). 
70 

•HR 1227 IH 

1 (b) EMPLOYEES COVERED BY GOVERNMENT EM2 PLOYEE RIGHTS ACT OF 1991.— 

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

4 procedures provided in sections 302 and 304 of the 

5 Government Employee Rights Act of 1991 (42 

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

7 or any person, alleging a violation of section 

8 302(a)(1) of that Act (42 U.S.C. 2000e–16b(a)(1)) 

9 shall be the powers, remedies, and procedures this 

10 title provides to the Commission, or any person, re11 spectively, alleging an unlawful employment practice 

12 in violation of this title against an employee de13 scribed in section 201(2)(A)(ii), except as provided 

14 in paragraphs (2) and (3). 

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

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

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

18 1988), shall be powers, remedies, and procedures 

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

20 alleging such a practice. 

21 (3) DAMAGES.—The powers, remedies, and pro22 cedures provided in section 1977A of the Revised 

23 Statutes (42 U.S.C. 1981a), including the limita24 tions contained in subsection (b)(3) of such section 

25 1977A, shall be powers, remedies, and procedures 
71 

•HR 1227 IH 

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

2 alleging such a practice (not an employment practice 

3 specifically excluded from coverage under section 

4 1977A(a)(1) of the Revised Statutes). 

5 (c) EMPLOYEES COVERED BY CONGRESSIONAL AC6 COUNTABILITY ACT OF 1995.— 

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

8 procedures provided in the Congressional Account9 ability Act of 1995 (2 U.S.C. 1301 et seq.) to the 

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

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

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

13 shall be the powers, remedies, and procedures this 

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

15 an unlawful employment practice in violation of this 

16 title against an employee described in section 

17 201(2)(A)(iii), except as provided in paragraphs (2) 

18 and (3). 

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

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

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

22 1988), shall be powers, remedies, and procedures 

23 this title provides to that Board, or any person, al24 leging such a practice. 
72 

•HR 1227 IH 

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 that Board, or any person, al7 leging such a practice (not an employment practice 

8 specifically excluded from coverage under section 

9 1977A(a)(1) of the Revised Statutes). 

10 (4) OTHER APPLICABLE PROVISIONS.—With re11 spect to a claim alleging a practice described in 

12 paragraph (1), title III of the Congressional Ac13 countability Act of 1995 (2 U.S.C. 1381 et seq.) 

14 shall apply in the same manner as such title applies 

15 with respect to a claim alleging a violation of section 

16 201(a)(1) of such Act (2 U.S.C. 1311(a)(1)). 

17 (d) EMPLOYEES COVERED BY CHAPTER 5 OF TITLE

18 3, UNITED STATES CODE.— 

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

20 procedures provided in chapter 5 of title 3, United 

21 States Code, to the President, the Commission, the 

22 Merit Systems Protection Board, or any person, al23 leging a violation of section 411(a)(1) of that title, 

24 shall be the powers, remedies, and procedures this 

25 title provides to the President, the Commission, such 
73 

•HR 1227 IH 

1 Board, or any person, respectively, alleging an un2 lawful employment practice in violation of this title 

3 against an employee described in section 

4 201(2)(A)(iv), except as provided in paragraphs (2) 

5 and (3). 

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

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

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

9 1988), shall be powers, remedies, and procedures 

10 this title provides to the President, the Commission, 

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

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

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

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

17 this title provides to the President, the Commission, 

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

19 (not an employment practice specifically excluded 

20 from coverage under section 1977A(a)(1) of the Re21 vised Statutes). 

22 (e) EMPLOYEES COVERED BY SECTION 717 OF THE

23 CIVIL RIGHTS ACT OF 1964.— 

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

25 procedures provided in section 717 of the Civil 
74 

•HR 1227 IH 

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

2 Commission, the Attorney General, the Librarian of 

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

4 section shall be the powers, remedies, and proce5 dures this title provides to the Commission, the At6 torney General, the Librarian of Congress, or any 

7 person, respectively, alleging an unlawful employ8 ment practice in violation of this title against an em9 ployee or applicant described in section 

10 201(2)(A)(v), except as provided in paragraphs (2) 

11 and (3). 

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

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

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

15 1988), shall be powers, remedies, and procedures 

16 this title provides to the Commission, the Attorney 

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

18 alleging such a practice. 

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

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

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

24 this title provides to the Commission, the Attorney 

25 General, the Librarian of Congress, or any person, 
75 

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1 alleging such a practice (not an employment practice 

2 specifically excluded from coverage under section 

3 1977A(a)(1) of the Revised Statutes). 

4 (f) DEFINITION.—In this section, the term ‘‘Commis5 sion’’ means the Equal Employment Opportunity Commis6 sion. 

7 SEC. 208. DISPARATE IMPACT. 

8 (a) GENERAL RULE.—Notwithstanding any other 

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

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

11 (42 U.S.C. 2000e–d(k)), on the basis of genetic informa12 tion does not establish a cause of action under this Act. 

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

14 the date of enactment of this Act, there shall be estab15 lished a commission, to be known as the Genetic Non16 discrimination Study Commission (referred to in this sec17 tion as the ‘‘Commission’’) to review the developing 

18 science of genetics and to make recommendations to Con19 gress regarding whether to provide a disparate impact 

20 cause of action under this Act. 

21 (c) MEMBERSHIP.— 

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

23 composed of 8 members, of which— 

24 (A) 1 member shall be appointed by the 

25 Majority Leader of the Senate; 
76 

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1 (B) 1 member shall be appointed by the 

2 Minority Leader of the Senate; 

3 (C) 1 member shall be appointed by the 

4 Chairman of the Committee on Health, Edu5 cation, Labor, and Pensions of the Senate; 

6 (D) 1 member shall be appointed by the 

7 ranking minority member of the Committee on 

8 Health, Education, Labor, and Pensions of the 

9 Senate; 

10 (E) 1 member shall be appointed by the 

11 Speaker of the House of Representatives; 

12 (F) 1 member shall be appointed by the 

13 Minority Leader of the House of Representa14 tives; 

15 (G) 1 member shall be appointed by the 

16 Chairman of the Committee on Education and 

17 the Workforce of the House of Representatives; 

18 and 

19 (H) 1 member shall be appointed by the 

20 ranking minority member of the Committee on 

21 Education and the Workforce of the House of 

22 Representatives. 

23 (2) COMPENSATION AND EXPENSES.—The 

24 members of the Commission shall not receive com25 pensation for the performance of services for the 
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1 Commission, but shall be allowed travel expenses, in2 cluding per diem in lieu of subsistence, at rates au3 thorized for employees of agencies under subchapter 

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

5 away from their homes or regular places of business 

6 in the performance of services for the Commission. 

7 (d) ADMINISTRATIVE PROVISIONS.— 

8 (1) LOCATION.—The Commission shall be lo9 cated in a facility maintained by the Equal Employ10 ment Opportunity Commission. 

11 (2) DETAIL OF GOVERNMENT EMPLOYEES.— 

12 Any Federal Government employee may be detailed 

13 to the Commission without reimbursement, and such 

14 detail shall be without interruption or loss of civil 

15 service status or privilege. 

16 (3) INFORMATION FROM FEDERAL AGENCIES.— 

17 The Commission may secure directly from any Fed18 eral department or agency such information as the 

19 Commission considers necessary to carry out the 

20 provisions of this section. Upon request of the Com21 mission, the head of such department or agency 

22 shall furnish such information to the Commission. 

23 (4) HEARINGS.—The Commission may hold 

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

25 take such testimony, and receive such evidence as 
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1 the Commission considers advisable to carry out the 

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

3 possible, the Commission shall use existing data and 

4 research. 

5 (5) POSTAL SERVICES.—The Commission may 

6 use the United States mails in the same manner and 

7 under the same conditions as other departments and 

8 agencies of the Federal Government. 

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

10 members are appointed to the Commission under sub11 section (c)(1), the Commission shall submit to Congress 

12 a report that summarizes the findings of the Commission 

13 and makes such recommendations for legislation as are 

14 consistent with this Act. 

15 (f) AUTHORIZATION OF APPROPRIATIONS.—There 

16 are authorized to be appropriated to the Equal Employ17 ment Opportunity Commission such sums as may be nec18 essary to carry out this section. 

19 SEC. 209. CONSTRUCTION. 

20 Nothing in this title shall be construed to— 

21 (1) limit the rights or protections of an indi22 vidual under the Americans with Disabilities Act of 

23 1990 (42 U.S.C. 12101 et seq.), including coverage 

24 afforded to individuals under section 102 of such 
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1 Act (42 U.S.C. 12112), or under the Rehabilitation 

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

3 (2)(A) limit the rights or protections of an indi4 vidual to bring an action under this title against an 

5 employer, employment agency, labor organization, or 

6 joint labor-management committee for a violation of 

7 this title; or 

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

9 employer, employment agency, labor organization, or 

10 joint labor-management committee of a provision of 

11 the amendments made by title I; 

12 (3) limit the rights or protections of an indi13 vidual under any other Federal or State statute that 

14 provides equal or greater protection to an individual 

15 than the rights or protections provided for under 

16 this title; 

17 (4) apply to the Armed Forces Repository of 

18 Specimen Samples for the Identification of Remains; 

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

20 obligations of employees or employers under applica21 ble workers’ compensation laws; 

22 (6) limit the authority of a Federal department 

23 or agency to conduct or sponsor occupational or 

24 other health research that is conducted in compli25 ance with the regulations contained in part 46 of 
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1 title 45, Code of Federal Regulations (or any cor2 responding or similar regulation or rule); and 

3 (7) limit the statutory or regulatory authority 

4 of the Occupational Safety and Health Administra5 tion or the Mine Safety and Health Administration 

6 to promulgate or enforce workplace safety and 

7 health laws and regulations. 

8 SEC. 210. MEDICAL INFORMATION THAT IS NOT GENETIC 

9 INFORMATION. 

10 An employer, employment agency, labor organization, 

11 or joint labor-management committee shall not be consid12 ered to be in violation of this title based on the use, acqui13 sition, or disclosure of medical information that is not ge14 netic information about a manifested disease, disorder, or 

15 pathological condition of an employee or member, includ16 ing a manifested disease, disorder, or pathological condi17 tion that has or may have a genetic basis. 

18 SEC. 211. REGULATIONS. 

19 Not later than 1 year after the date of enactment 

20 of this title, the Commission shall issue final regulations 

21 in an accessible format to carry out this title. 

22 SEC. 212. AUTHORIZATION OF APPROPRIATIONS. 

23 There are authorized to be appropriated such sums 

24 as may be necessary to carry out this title (except for sec25 tion 208). 
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1 SEC. 213. EFFECTIVE DATE. 

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

3 after the date of enactment of this Act. 

4 TITLE III—MISCELLANEOUS 

5 PROVISION 

6 SEC. 301. SEVERABILITY. 

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

8 this Act, or the application of such provision or amend9 ment to any person or circumstance is held to be unconsti10 tutional, the remainder of this Act, the amendments made 

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

12 person or circumstance shall not be affected thereby. 

Æ