I 

110TH CONGRESS 

1ST SESSION H. R. 493 

To prohibit discrimination on the basis of genetic information with respect 

to health insurance and employment. 

IN THE HOUSE OF REPRESENTATIVES 

JANUARY 16, 2007 

Ms. SLAUGHTER (for herself, Mrs. BIGGERT, Ms. ESHOO, Mr. WALDEN of Oregon, Mr. GEORGE MILLER of California, Mr. DINGELL, Mr. RANGEL, 

Mr. ACKERMAN, Mr. ALEXANDER, Mr. ALLEN, Mr. BACHUS, Mr. BAKER, 

Ms. BALDWIN, Mr. BARTLETT of Maryland, Mr. BILIRAKIS, Mrs. 

BLACKBURN, Mr. BLUMENAUER, Mrs. BONO, Mr. BOUSTANY, Mr. 

BROWN of South Carolina, Ms. GINNY BROWN-WAITE of Florida, Mr. 

BURTON of Indiana, Mr. CALVERT, Mrs. CAPITO, Mrs. CAPPS, Mr. 

CAPUANO, Mr. CASTLE, Mr. CHABOT, Mr. CHANDLER, Mr. COLE of 

Oklahoma, Mr. CONAWAY, Mr. CONYERS, Mrs. DAVIS of California, Mr. 

TOM DAVIS of Virginia, Mr. DAVIS of Kentucky, Ms. DEGETTE, Mr. 

DICKS, Mr. DOGGETT, Mrs. DRAKE, Mr. DUNCAN, Mr. EHLERS, Mr. 

EMANUEL, Mrs. EMERSON, Mr. ENGEL, Mr. ENGLISH of Pennsylvania, 

Mr. FARR, Mr. FERGUSON, Mr. FRELINGHUYSEN, Mr. GALLEGLY, Mr. 

GERLACH, Mr. GILCHREST, Mr. GILLMOR, Mr. GOHMERT, Ms. GRANGER, 

Mr. GENE GREEN of Texas, Mr. GRIJALVA, Mr. HALL of Texas, Mr. 

HASTINGS of Washington, Mr. HERGER, Ms. HERSETH, Mr. HINOJOSA, 

Ms. HIRONO, Mr. HOBSON, Mr. HOEKSTRA, Ms. HOOLEY, Mr. HUNTER, 

Mr. ISRAEL, Mr. JOHNSON of Illinois, Mr. JONES of North Carolina, Mr. 

KANJORSKI, Mr. KENNEDY, Mr. KILDEE, Mr. KING of New York, Mr. 

KIRK, Mr. KUCINICH, Mr. KUHL of New York, Mr. LAHOOD, Mr. 

LATHAM, Mr. LEWIS of Kentucky, Mr. LIPINSKI, Mr. LOBIONDO, Ms. 

ZOE LOFGREN of California, Mr. LUCAS, Mrs. MALONEY of New York, 

Mr. MANZULLO, Mr. MARCHANT, Mr. MCCAUL of Texas, Ms. MCCOLLUM

of Minnesota, Mr. MCCOTTER, Mr. MCHUGH, Mr. MCNULTY, Mr. MICA, 

Mr. MORAN of Virginia, Mrs. MYRICK, Mr. NEUGEBAUER, Mr. NORWOOD, Mr. OLVER, Mr. PEARCE, Mr. PITTS, Mr. PLATTS, Mr. PORTER, 

Mr. PRICE of North Carolina, Ms. PRYCE of Ohio, Mr. PUTNAM, Mr. 

RAMSTAD, Mr. REGULA, Mr. REICHERT, Mr. REYNOLDS, Mr. ROSKAM, 

Ms. ROS-LEHTINEN, Mr. RYAN of Wisconsin, Mr. SAXTON, Ms. 

SCHAKOWSKY, Mr. SCHIFF, Mr. SESSIONS, Mr. SHAYS, Mr. SIMPSON, 

Ms. SOLIS, Mr. SOUDER, Mr. STARK, Mr. THOMPSON of California, Mr. 

TIBERI, Mr. TIERNEY, Mr. UDALL of New Mexico, Mr. UPTON, Mr. VAN

HOLLEN, Mr. WALSH of New York, Mr. WAMP, Ms. WATSON, Mr. WAXVerDate Aug 31 2005 22:31 Jan 17, 2007 Jkt 059196 PO 00000 Frm 00001 Fmt 6652 Sfmt 6652 E:\BILLS\H493.IH H493

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MAN, Mr. WELLER of Illinois, Mr. WEXLER, Mr. WHITFIELD, Mr. WICKER, Mr. WILSON of South Carolina, Mr. WOLF, Ms. WOOLSEY, Mr. 

YARMUTH, Mr. YOUNG of Florida, Mr. CROWLEY, Mr. HOLT, Mr. 

JINDAL, Mr. LATOURETTE, and Mr. TANCREDO) introduced the following 

bill; which was referred to the Committee on Education and Labor, 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, 

3 SECTION 1. SHORT TITLE; TABLE OF CONTENTS. 

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

5 ‘‘Genetic Information Nondiscrimination Act of 2007’’. 

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

7 this Act is as follows: 

Sec. 1. Short title; table of contents. 

Sec. 2. Findings. 

TITLE I—GENETIC NONDISCRIMINATION IN HEALTH INSURANCE 

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. 


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Sec. 204. Labor organization practices. 

Sec. 205. Training programs. 

Sec. 206. Confidentiality of genetic information. 

Sec. 207. Remedies and enforcement. 

Sec. 208. Disparate impact. 

Sec. 209. Construction. 

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

Sec. 211. Regulations. 

Sec. 212. Authorization of appropriations. 

Sec. 213. Effective date. 

TITLE III—MISCELLANEOUS PROVISION 

Sec. 301. Severability. 

1 SEC. 2. FINDINGS. 

2 Congress makes the following findings: 

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

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

7 earlier detection of illnesses, often before symptoms 

8 have begun. Genetic testing can allow individuals to 

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

13 fewer side effects than current treatments. These 

14 advances give rise to the potential misuse of genetic 

15 information to discriminate in health insurance and 

16 employment. 

17 (2) The early science of genetics became the 

18 basis of State laws that provided for the sterilization 

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


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1 as mental retardation, mental disease, epilepsy, 

2 blindness, and hearing loss, among other conditions. 

3 The first sterilization law was enacted in the State 

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

5 adopted sterilization laws to ‘‘correct’’ apparent ge6 netic traits or tendencies. Many of these State laws 

7 have since been repealed, and many have been modi8 fied to include essential constitutional requirements 

9 of due process and equal protection. However, the 

10 current explosion in the science of genetics, and the 

11 history of sterilization laws by the States based on 

12 early genetic science, compels Congressional action 

13 in this area. 

14 (3) Although genes are facially neutral markers, 

15 many genetic conditions and disorders are associated 

16 with particular racial and ethnic groups and gender. 

17 Because some genetic traits are most prevalent in 

18 particular groups, members of a particular group 

19 may be stigmatized or discriminated against as a re20 sult of that genetic information. This form of dis21 crimination was evident in the 1970s, which saw the 

22 advent of programs to screen and identify carriers of 

23 sickle cell anemia, a disease which afflicts African24 Americans. Once again, State legislatures began to 

25 enact discriminatory laws in the area, and in the 


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1 early 1970s began mandating genetic screening of 

2 all African Americans for sickle cell anemia, leading 

3 to discrimination and unnecessary fear. To alleviate 

4 some of this stigma, Congress in 1972 passed the 

5 National Sickle Cell Anemia Control Act, which 

6 withholds Federal funding from States unless sickle 

7 cell testing is voluntary. 

8 (4) Congress has been informed of examples of 

9 genetic discrimination in the workplace. These in10 clude the use of pre-employment genetic screening at 

11 Lawrence Berkeley Laboratory, which led to a court 

12 decision in favor of the employees in that case Nor13 man-Bloodsaw v. Lawrence Berkeley Laboratory 

14 (135 F.3d 1260, 1269 (9th Cir. 1998)). Congress 

15 clearly has a compelling public interest in relieving 

16 the fear of discrimination and in prohibiting its ac17 tual practice in employment and health insurance. 

18 (5) Federal law addressing genetic discrimina19 tion in health insurance and employment is incom20 plete in both the scope and depth of its protections. 

21 Moreover, while many States have enacted some type 

22 of genetic non-discrimination law, these laws vary 

23 widely with respect to their approach, application, 

24 and level of protection. Congress has collected sub25 stantial evidence that the American public and the 


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1 medical community find the existing patchwork of 

2 State and Federal laws to be confusing and inad3 equate to protect them from discrimination. There4 fore Federal legislation establishing a national and 

5 uniform basic standard is necessary to fully protect 

6 the public from discrimination and allay their con7 cerns about the potential for discrimination, thereby 

8 allowing individuals to take advantage of genetic 

9 testing, technologies, research, and new therapies. 

10 TITLE I—GENETIC NON11 DISCRIMINATION IN HEALTH 

12 INSURANCE 

13 SEC. 101. AMENDMENTS TO EMPLOYEE RETIREMENT IN14 COME SECURITY ACT OF 1974. 

15 (a) PROHIBITION OF HEALTH DISCRIMINATION ON

16 THE BASIS OF GENETIC INFORMATION OR GENETIC

17 SERVICES.— 

18 (1) NO ENROLLMENT RESTRICTION FOR GE19 NETIC SERVICES.—Section 702(a)(1)(F) of the Em20 ployee Retirement Income Security Act of 1974 (29 

21 U.S.C. 1182(a)(1)(F)) is amended by inserting be22 fore the period the following: ‘‘(including informa23 tion about a request for or receipt of genetic services 

24 by an individual or family member of such indi25 vidual)’’. 


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1 (2) NO DISCRIMINATION IN GROUP PREMIUMS

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

3 of the Employee Retirement Income Security Act of 

4 1974 (29 U.S.C. 1182(b)) is amended— 

5 (A) in paragraph (2)(A), by inserting be6 fore the semicolon the following: ‘‘except as pro7 vided in paragraph (3)’’; and 

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

9 ‘‘(3) NO DISCRIMINATION IN GROUP PREMIUMS

10 BASED ON GENETIC INFORMATION.—For purposes 

11 of this section, a group health plan, or a health in12 surance issuer offering group health insurance cov13 erage in connection with a group health plan, shall 

14 not adjust premium or contribution amounts for a 

15 group on the basis of genetic information concerning 

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

17 individual (including information about a request for 

18 or receipt of genetic services by an individual or 

19 family member of such individual).’’. 

20 (b) LIMITATIONS ON GENETIC TESTING.—Section 

21 702 of the Employee Retirement Income Security Act of 

22 1974 (29 U.S.C. 1182) is amended by adding at the end 

23 the following: 

24 ‘‘(c) GENETIC TESTING.— 


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1 ‘‘(1) LIMITATION ON REQUESTING OR REQUIR2 ING GENETIC TESTING.—A group health plan, or a 

3 health insurance issuer offering health insurance 

4 coverage in connection with a group health plan, 

5 shall not request or require an individual or a family 

6 member of such individual to undergo a genetic test. 

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

8 this part shall be construed to— 

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

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

12 that such individual or a family member of such 

13 individual undergo a genetic test; 

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

15 professional who is employed by or affiliated 

16 with a group health plan or a health insurance 

17 issuer and who is providing health care services 

18 to an individual as part of a bona fide wellness 

19 program to notify such individual of the avail20 ability of a genetic test or to provide informa21 tion to such individual regarding such genetic 

22 test; or 

23 ‘‘(C) authorize or permit a health care pro24 fessional to require that an individual undergo 

25 a genetic test. 


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

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

3 group health plans and health insurance issuers without 

4 regard to section 732(a).’’. 

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

6 the Employee Retirement Income Security Act of 1974 

7 (29 U.S.C. 1132) is amended by adding at the end the 

8 following: 

9 ‘‘(n) ENFORCEMENT OF GENETIC NONDISCRIMINA10 TION REQUIREMENTS.— 

11 ‘‘(1) INJUNCTIVE RELIEF FOR IRREPARABLE

12 HARM.—With respect to any violation of subsection 

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

14 or beneficiary may seek relief under subsection 

15 502(a)(1)(B) prior to the exhaustion of available ad16 ministrative remedies under section 503 if it is dem17 onstrated to the court, by a preponderance of the 

18 evidence, that the exhaustion of such remedies would 

19 cause irreparable harm to the health of the partici20 pant or beneficiary. Any determinations that already 

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

22 that are made in such case while an action under 

23 this paragraph is pending, shall be given due consid24 eration by the court in any action under this sub25 section in such case. 


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1 ‘‘(2) EQUITABLE RELIEF FOR GENETIC NON2 DISCRIMINATION.— 

3 ‘‘(A) REINSTATEMENT OF BENEFITS

4 WHERE EQUITABLE RELIEF HAS BEEN AWARD5 ED.—The recovery of benefits by a participant 

6 or beneficiary under a civil action under this 

7 section may include an administrative penalty 

8 under subparagraph (B) and the retroactive re9 instatement of coverage under the plan involved 

10 to the date on which the participant or bene11 ficiary was denied eligibility for coverage if— 

12 ‘‘(i) the civil action was commenced 

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

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

15 such civil action was based constitutes a 

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

17 (c) of section 702. 

18 ‘‘(B) ADMINISTRATIVE PENALTY.— 

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

20 who fails to comply with the requirements 

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

22 section 702 with respect to a participant or 

23 beneficiary may, in an action commenced 

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

25 liable in the discretion of the court, for a 


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1 penalty in the amount not more than $100 

2 for each day in the noncompliance period. 

3 ‘‘(ii) NONCOMPLIANCE PERIOD.—For 

4 purposes of clause (i), the term ‘non5 compliance period’ means the period— 

6 ‘‘(I) beginning on the date that a 

7 failure described in clause (i) occurs; 

8 and 

9 ‘‘(II) ending on the date that 

10 such failure is corrected. 

11 ‘‘(iii) PAYMENT TO PARTICIPANT OR

12 BENEFICIARY.—A penalty collected under 

13 this subparagraph shall be paid to the par14 ticipant or beneficiary involved. 

15 ‘‘(3) SECRETARIAL ENFORCEMENT AUTHOR16 ITY.— 

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

18 the authority to impose a penalty on any failure 

19 of a group health plan to meet the requirements 

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

21 702. 

22 ‘‘(B) AMOUNT.— 

23 ‘‘(i) IN GENERAL.—The amount of 

24 the penalty imposed by subparagraph (A) 

25 shall be $100 for each day in the nonVerDate Aug 31 2005 22:31 Jan 17, 2007 Jkt 059196 PO 00000 Frm 00011 Fmt 6652 Sfmt 6201 E:\BILLS\H493.IH H493

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1 compliance period with respect to each in2 dividual to whom such failure relates. 

3 ‘‘(ii) NONCOMPLIANCE PERIOD.—For 

4 purposes of this paragraph, the term ‘non5 compliance period’ means, with respect to 

6 any failure, the period— 

7 ‘‘(I) beginning on the date such 

8 failure first occurs; and 

9 ‘‘(II) ending on the date such 

10 failure is corrected. 

11 ‘‘(C) MINIMUM PENALTIES WHERE FAIL12 URE DISCOVERED.—Notwithstanding clauses (i) 

13 and (ii) of subparagraph (D): 

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

15 more failures with respect to an indi16 vidual— 

17 ‘‘(I) which are not corrected be18 fore the date on which the plan re19 ceives a notice from the Secretary of 

20 such violation; and 

21 ‘‘(II) which occurred or continued 

22 during the period involved; 

23 the amount of penalty imposed by subpara24 graph (A) by reason of such failures with 


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1 respect to such individual shall not be less 

2 than $2,500. 

3 ‘‘(ii) HIGHER MINIMUM PENALTY

4 WHERE VIOLATIONS ARE MORE THAN DE

5 MINIMIS.—To the extent violations for 

6 which any person is liable under this para7 graph for any year are more than de mini8 mis, clause (i) shall be applied by sub9 stituting ‘$15,000’ for ‘$2,500’ with re10 spect to such person. 

11 ‘‘(D) LIMITATIONS.— 

12 ‘‘(i) PENALTY NOT TO APPLY WHERE

13 FAILURE NOT DISCOVERED EXERCISING

14 REASONABLE DILIGENCE.—No penalty 

15 shall be imposed by subparagraph (A) on 

16 any failure during any period for which it 

17 is established to the satisfaction of the 

18 Secretary that the person otherwise liable 

19 for such penalty did not know, and exer20 cising reasonable diligence would not have 

21 known, that such failure existed. 

22 ‘‘(ii) PENALTY NOT TO APPLY TO

23 FAILURES CORRECTED WITHIN CERTAIN

24 PERIODS.—No penalty shall be imposed by 

25 subparagraph (A) on any failure if— 


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1 ‘‘(I) such failure was due to rea2 sonable cause and not to willful ne3 glect; and 

4 ‘‘(II) such failure is corrected 

5 during the 30-day period beginning on 

6 the first date the person otherwise lia7 ble for such penalty knew, or exer8 cising reasonable diligence would have 

9 known, that such failure existed. 

10 ‘‘(iii) OVERALL LIMITATION FOR UN11 INTENTIONAL FAILURES.—In the case of 

12 failures which are due to reasonable cause 

13 and not to willful neglect, the penalty im14 posed by subparagraph (A) for failures 

15 shall not exceed the amount equal to the 

16 lesser of— 

17 ‘‘(I) 10 percent of the aggregate 

18 amount paid or incurred by the em19 ployer (or predecessor employer) dur20 ing the preceding taxable year for 

21 group health plans; or 

22 ‘‘(II) $500,000. 

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

24 of a failure which is due to reasonable cause 

25 and not to willful neglect, the Secretary may 


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1 waive part or all of the penalty imposed by sub2 paragraph (A) to the extent that the payment 

3 of such penalty would be excessive relative to 

4 the failure involved.’’. 

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

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

7 1191b(d)) is amended by adding at the end the following: 

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

9 member’ means with respect to an individual— 

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

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

12 including a child who is born to or placed for 

13 adoption with the individual; and 

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

15 to the individual or the spouse or child de16 scribed in subparagraph (A) or (B). 

17 ‘‘(6) GENETIC INFORMATION.— 

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

19 subparagraph (B), the term ‘genetic informa20 tion’ means information about— 

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

22 ‘‘(ii) the genetic tests of family mem23 bers of the individual; or 


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

2 disorder in family members of the indi3 vidual. 

4 ‘‘(B) EXCLUSIONS.—The term ‘genetic in5 formation’ shall not include information about 

6 the sex or age of an individual. 

7 ‘‘(7) GENETIC TEST.— 

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

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

10 chromosomes, proteins, or metabolites, that de11 tects genotypes, mutations, or chromosomal 

12 changes. 

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

14 test’ does not mean— 

15 ‘‘(i) an analysis of proteins or metabo16 lites that does not detect genotypes, 

17 mutations, or chromosomal changes; or 

18 ‘‘(ii) an analysis of proteins or me19 tabolites that is directly related to a mani20 fested disease, disorder, or pathological 

21 condition that could reasonably be detected 

22 by a health care professional with appro23 priate training and expertise in the field of 

24 medicine involved. 


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

2 services’ means— 

3 ‘‘(A) a genetic test; 

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

5 interpreting, or assessing genetic information); 

6 or 

7 ‘‘(C) genetic education.’’. 

8 (e) REGULATIONS AND EFFECTIVE DATE.— 

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

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

11 Labor shall issue final regulations in an accessible 

12 format to carry out the amendments made by this 

13 section. 

14 (2) EFFECTIVE DATE.—The amendments made 

15 by this section shall apply with respect to group 

16 health plans for plan years beginning after the date 

17 that is 18 months after the date of enactment of 

18 this title. 

19 SEC. 102. AMENDMENTS TO THE PUBLIC HEALTH SERVICE 

20 ACT. 

21 (a) AMENDMENTS RELATING TO THE GROUP MAR22 KET.— 

23 (1) PROHIBITION OF HEALTH DISCRIMINATION

24 ON THE BASIS OF GENETIC INFORMATION OR GE25 NETIC SERVICES.— 


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1 (A) NO ENROLLMENT RESTRICTION FOR

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

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

4 300gg–1(a)(1)(F)) is amended by inserting be5 fore the period the following: ‘‘(including infor6 mation about a request for or receipt of genetic 

7 services by an individual or family member of 

8 such individual)’’. 

9 (B) NO DISCRIMINATION IN GROUP PRE10 MIUMS BASED ON GENETIC INFORMATION.— 

11 Section 2702(b) of the Public Health Service 

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

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

14 before the semicolon the following: ‘‘, ex15 cept as provided in paragraph (3)’’; and 

16 (ii) by adding at the end the fol17 lowing: 

18 ‘‘(3) NO DISCRIMINATION IN GROUP PREMIUMS

19 BASED ON GENETIC INFORMATION.—For purposes 

20 of this section, a group health plan, or a health in21 surance issuer offering group health insurance cov22 erage in connection with a group health plan, shall 

23 not adjust premium or contribution amounts for a 

24 group on the basis of genetic information concerning 

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


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1 individual (including information about a request for 

2 or receipt of genetic services by an individual or 

3 family member of such individual).’’. 

4 (2) LIMITATIONS ON GENETIC TESTING.—Sec5 tion 2702 of the Public Health Service Act (42 

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

7 the following: 

8 ‘‘(c) GENETIC TESTING.— 

9 ‘‘(1) LIMITATION ON REQUESTING OR REQUIR10 ING GENETIC TESTING.—A group health plan, or a 

11 health insurance issuer offering health insurance 

12 coverage in connection with a group health plan, 

13 shall not request or require an individual or a family 

14 member of such individual to undergo a genetic test. 

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

16 this part shall be construed to— 

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

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

20 that such individual or a family member of such 

21 individual undergo a genetic test; 

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

23 professional who is employed by or affiliated 

24 with a group health plan or a health insurance 

25 issuer and who is providing health care services 


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1 to an individual as part of a bona fide wellness 

2 program to notify such individual of the avail3 ability of a genetic test or to provide informa4 tion to such individual regarding such genetic 

5 test; or 

6 ‘‘(C) authorize or permit a health care pro7 fessional to require that an individual undergo 

8 a genetic test. 

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

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

11 group health plans and health insurance issuers without 

12 regard to section 2721(a).’’. 

13 (3) REMEDIES AND ENFORCEMENT.—Section 

14 2722(b) of the Public Health Service Act (42 U.S.C. 

15 300gg–22(b)) is amended by adding at the end the 

16 following: 

17 ‘‘(3) ENFORCEMENT AUTHORITY RELATING TO

18 GENETIC DISCRIMINATION.— 

19 ‘‘(A) GENERAL RULE.—In the cases de20 scribed in paragraph (1), notwithstanding the 

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

22 provisions shall apply with respect to an action 

23 under this subsection by the Secretary with re24 spect to any failure of a health insurance issuer 

25 in connection with a group health plan, to meet 


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

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

3 ‘‘(B) AMOUNT.— 

4 ‘‘(i) IN GENERAL.—The amount of 

5 the penalty imposed under this paragraph 

6 shall be $100 for each day in the non7 compliance period with respect to each in8 dividual to whom such failure relates. 

9 ‘‘(ii) NONCOMPLIANCE PERIOD.—For 

10 purposes of this paragraph, the term ‘non11 compliance period’ means, with respect to 

12 any failure, the period— 

13 ‘‘(I) beginning on the date such 

14 failure first occurs; and 

15 ‘‘(II) ending on the date such 

16 failure is corrected. 

17 ‘‘(C) MINIMUM PENALTIES WHERE FAIL18 URE DISCOVERED.—Notwithstanding clauses (i) 

19 and (ii) of subparagraph (D): 

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

21 more failures with respect to an indi22 vidual— 

23 ‘‘(I) which are not corrected be24 fore the date on which the plan reVerDate Aug 31 2005 22:31 Jan 17, 2007 Jkt 059196 PO 00000 Frm 00021 Fmt 6652 Sfmt 6201 E:\BILLS\H493.IH H493

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1 ceives a notice from the Secretary of 

2 such violation; and 

3 ‘‘(II) which occurred or continued 

4 during the period involved; 

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

7 respect to such individual shall not be less 

8 than $2,500. 

9 ‘‘(ii) HIGHER MINIMUM PENALTY

10 WHERE VIOLATIONS ARE MORE THAN DE

11 MINIMIS.—To the extent violations for 

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

17 ‘‘(D) LIMITATIONS.— 

18 ‘‘(i) PENALTY NOT TO APPLY WHERE

19 FAILURE NOT DISCOVERED EXERCISING

20 REASONABLE DILIGENCE.—No penalty 

21 shall be imposed by subparagraph (A) on 

22 any failure during any period for which it 

23 is established to the satisfaction of the 

24 Secretary that the person otherwise liable 

25 for such penalty did not know, and exerVerDate Aug 31 2005 22:31 Jan 17, 2007 Jkt 059196 PO 00000 Frm 00022 Fmt 6652 Sfmt 6201 E:\BILLS\H493.IH H493

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1 cising reasonable diligence would not have 

2 known, that such failure existed. 

3 ‘‘(ii) PENALTY NOT TO APPLY TO

4 FAILURES CORRECTED WITHIN CERTAIN

5 PERIODS.—No penalty shall be imposed by 

6 subparagraph (A) on any failure if— 

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

10 ‘‘(II) such failure is corrected 

11 during the 30-day period beginning on 

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

15 known, that such failure existed. 

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

18 failures which are due to reasonable cause 

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

21 shall not exceed the amount equal to the 

22 lesser of— 

23 ‘‘(I) 10 percent of the aggregate 

24 amount paid or incurred by the em25 ployer (or predecessor employer) durVerDate Aug 31 2005 22:31 Jan 17, 2007 Jkt 059196 PO 00000 Frm 00023 Fmt 6652 Sfmt 6201 E:\BILLS\H493.IH H493

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1 ing the preceding taxable year for 

2 group health plans; or 

3 ‘‘(II) $500,000. 

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

5 of a failure which is due to reasonable cause 

6 and not to willful neglect, the Secretary may 

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

9 of such penalty would be excessive relative to 

10 the failure involved.’’. 

11 (4) DEFINITIONS.—Section 2791(d) of the Pub12 lic Health Service Act (42 U.S.C. 300gg–91(d)) is 

13 amended by adding at the end the following: 

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

15 member’ means with respect to an individual— 

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

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

18 including a child who is born to or placed for 

19 adoption with the individual; and 

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

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

23 ‘‘(16) GENETIC INFORMATION.— 


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

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

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

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

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

8 disorder in family members of the indi9 vidual. 

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

12 the sex or age of an individual. 

13 ‘‘(17) GENETIC TEST.— 

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

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

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

18 changes. 

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

20 test’ does not mean— 

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

23 mutations, or chromosomal changes; or 

24 ‘‘(ii) an analysis of proteins or me25 tabolites that is directly related to a maniVerDate Aug 31 2005 22:31 Jan 17, 2007 Jkt 059196 PO 00000 Frm 00025 Fmt 6652 Sfmt 6201 E:\BILLS\H493.IH H493

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1 fested disease, disorder, or pathological 

2 condition that could reasonably be detected 

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

5 medicine involved. 

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

7 services’ means— 

8 ‘‘(A) a genetic test; 

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

10 interpreting, or assessing genetic information); 

11 or 

12 ‘‘(C) genetic education.’’. 

13 (b) AMENDMENT RELATING TO THE INDIVIDUAL

14 MARKET.— 

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

16 B of title XXVII of the Public Health Service Act 

17 (42 U.S.C. 300gg–51 et seq.) (relating to other re18 quirements) is amended— 

19 (A) by redesignating such subpart as sub20 part 2; and 

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

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

23 THE BASIS OF GENETIC INFORMATION. 

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

25 CONDITION OF ELIGIBILITY.—A health insurance issuer 


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1 offering health insurance coverage in the individual mar2 ket may not establish rules for the eligibility (including 

3 continued eligibility) of any individual to enroll in indi4 vidual health insurance coverage based on genetic infor5 mation (including information about a request for or re6 ceipt of genetic services by an individual or family member 

7 of such individual). 

8 ‘‘(b) PROHIBITION ON GENETIC INFORMATION IN

9 SETTING PREMIUM RATES.—A health insurance issuer of10 fering health insurance coverage in the individual market 

11 shall not adjust premium or contribution amounts for an 

12 individual on the basis of genetic information concerning 

13 the individual or a family member of the individual (in14 cluding information about a request for or receipt of ge15 netic services by an individual or family member of such 

16 individual). 

17 ‘‘(c) GENETIC TESTING.— 

18 ‘‘(1) LIMITATION ON REQUESTING OR REQUIR19 ING GENETIC TESTING.—A health insurance issuer 

20 offering health insurance coverage in the individual 

21 market shall not request or require an individual or 

22 a family member of such individual to undergo a ge23 netic test. 

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

25 this part shall be construed to— 


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

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

4 that such individual or a family member of such 

5 individual undergo a genetic test; 

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

7 professional who is employed by or affiliated 

8 with a health insurance issuer and who is pro9 viding health care services to an individual as 

10 part of a bona fide wellness program to notify 

11 such individual of the availability of a genetic 

12 test or to provide information to such individual 

13 regarding such genetic test; or 

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

16 a genetic test.’’. 

17 (2) REMEDIES AND ENFORCEMENT.—Section 

18 2761(b) of the Public Health Service Act (42 U.S.C. 

19 300gg–61(b)) is amended to read as follows: 

20 ‘‘(b) SECRETARIAL ENFORCEMENT AUTHORITY.— 

21 The Secretary shall have the same authority in relation 

22 to enforcement of the provisions of this part with respect 

23 to issuers of health insurance coverage in the individual 

24 market in a State as the Secretary has under section 

25 2722(b)(2), and section 2722(b)(3) with respect to violaVerDate Aug 31 2005 22:31 Jan 17, 2007 Jkt 059196 PO 00000 Frm 00028 Fmt 6652 Sfmt 6201 E:\BILLS\H493.IH H493

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1 tions of genetic nondiscrimination provisions, in relation 

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

3 to issuers of health insurance coverage in the small group 

4 market in the State.’’. 

5 (c) ELIMINATION OF OPTION OF NON-FEDERAL

6 GOVERNMENTAL PLANS TO BE EXCEPTED FROM RE7 QUIREMENTS CONCERNING GENETIC INFORMATION.— 

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

9 U.S.C. 300gg–21(b)(2)) is amended— 

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

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

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

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

14 ‘‘(D) ELECTION NOT APPLICABLE TO RE15 QUIREMENTS CONCERNING GENETIC INFORMA16 TION.—The election described in subparagraph 

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

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

19 section 2702 and the provisions of section 

20 2702(b) to the extent that such provisions 

21 apply to genetic information (or information 

22 about a request for or the receipt of genetic 

23 services by an individual or a family member of 

24 such individual).’’. 

25 (d) REGULATIONS AND EFFECTIVE DATE.— 


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

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

3 Labor and the Secretary of Health and Human 

4 Services (as the case may be) shall issue final regu5 lations in an accessible format to carry out the 

6 amendments made by this section. 

7 (2) EFFECTIVE DATE.—The amendments made 

8 by this section shall apply— 

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

10 health insurance coverage offered in connection 

11 with group health plans, for plan years begin12 ning after the date that is 18 months after the 

13 date of enactment of this title; and 

14 (B) with respect to health insurance cov15 erage offered, sold, issued, renewed, in effect, or 

16 operated in the individual market after the date 

17 that is 18 months after the date of enactment 

18 of this title. 

19 SEC. 103. AMENDMENTS TO TITLE XVIII OF THE SOCIAL SE20 CURITY ACT RELATING TO MEDIGAP. 

21 (a) NONDISCRIMINATION.— 

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

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

24 amended by adding at the end the following: 


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1 ‘‘(E)(i) An issuer of a medicare supple2 mental policy shall not deny or condition the 

3 issuance or effectiveness of the policy, and shall 

4 not discriminate in the pricing of the policy (in5 cluding the adjustment of premium rates) of an 

6 eligible individual on the basis of genetic infor7 mation concerning the individual (or informa8 tion about a request for, or the receipt of, ge9 netic services by such individual or family mem10 ber of such individual). 

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

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

13 information’ shall have the meanings given such 

14 terms in subsection (x).’’. 

15 (2) EFFECTIVE DATE.—The amendment made 

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

17 for policy years beginning after the date that is 18 

18 months after the date of enactment of this Act. 

19 (b) LIMITATIONS ON GENETIC TESTING.— 

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

21 Security Act (42 U.S.C. 1395ss) is amended by add22 ing at the end the following: 

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

24 ‘‘(1) GENETIC TESTING.— 


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1 ‘‘(A) LIMITATION ON REQUESTING OR RE2 QUIRING GENETIC TESTING.—An issuer of a 

3 medicare supplemental policy shall not request 

4 or require an individual or a family member of 

5 such individual to undergo a genetic test. 

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

7 in this title shall be construed to— 

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

9 care professional who is providing health 

10 care services with respect to an individual 

11 to request that such individual or a family 

12 member of such individual undergo a ge13 netic test; 

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

15 care professional who is employed by or af16 filiated with an issuer of a medicare sup17 plemental policy and who is providing 

18 health care services to an individual as 

19 part of a bona fide wellness program to no20 tify such individual of the availability of a 

21 genetic test or to provide information to 

22 such individual regarding such genetic test; 

23 or 


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1 ‘‘(iii) authorize or permit a health 

2 care professional to require that an indi3 vidual undergo a genetic test. 

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

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

6 member’ means with respect to an individual— 

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

8 ‘‘(ii) a dependent child of the indi9 vidual, including a child who is born to or 

10 placed for adoption with the individual; or 

11 ‘‘(iii) any other individuals related by 

12 blood to the individual or to the spouse or 

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

14 ‘‘(B) GENETIC INFORMATION.— 

15 ‘‘(i) IN GENERAL.—Except as pro16 vided in clause (ii), the term ‘genetic infor17 mation’ means information about— 

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

19 ‘‘(II) the genetic tests of family 

20 members of the individual; or 

21 ‘‘(III) the occurrence of a disease 

22 or disorder in family members of the 

23 individual. 


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

2 information’ shall not include information 

3 about the sex or age of an individual. 

4 ‘‘(C) GENETIC TEST.— 

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

6 test’ means an analysis of human DNA, 

7 RNA, chromosomes, proteins, or metabo8 lites, that detects genotypes, mutations, or 

9 chromosomal changes. 

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

11 test’ does not mean— 

12 ‘‘(I) an analysis of proteins or 

13 metabolites that does not detect 

14 genotypes, mutations, or chromosomal 

15 changes; or 

16 ‘‘(II) an analysis of proteins or 

17 metabolites that is directly related to 

18 a manifested disease, disorder, or 

19 pathological condition that could rea20 sonably be detected by a health care 

21 professional with appropriate training 

22 and expertise in the field of medicine 

23 involved. 

24 ‘‘(D) GENETIC SERVICES.—The term ‘ge25 netic services’ means— 


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1 ‘‘(i) a genetic test; 

2 ‘‘(ii) genetic counseling (such as ob3 taining, interpreting, or assessing genetic 

4 information); or 

5 ‘‘(iii) genetic education. 

6 ‘‘(E) ISSUER OF A MEDICARE SUPPLE7 MENTAL POLICY.—The term ‘issuer of a medi8 care supplemental policy’ includes a third-party 

9 administrator or other person acting for or on 

10 behalf of such issuer.’’. 

11 (2) CONFORMING AMENDMENT.—Section 

12 1882(o) of the Social Security Act (42 U.S.C. 

13 1395ss(o)) is amended by adding at the end the fol14 lowing: 

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

16 policy complies with subsection (s)(2)(E) and sub17 section (x).’’. 

18 (3) EFFECTIVE DATE.—The amendments made 

19 by this subsection shall apply with respect to an 

20 issuer of a medicare supplemental policy for policy 

21 years beginning on or after the date that is 18 

22 months after the date of enactment of this Act. 

23 (c) TRANSITION PROVISIONS.— 

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

25 and Human Services identifies a State as requiring 


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1 a change to its statutes or regulations to conform its 

2 regulatory program to the changes made by this sec3 tion, the State regulatory program shall not be con4 sidered to be out of compliance with the require5 ments of section 1882 of the Social Security Act due 

6 solely to failure to make such change until the date 

7 specified in paragraph (4). 

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

9 30, 2008, the National Association of Insurance 

10 Commissioners (in this subsection referred to as the 

11 ‘‘NAIC’’) modifies its NAIC Model Regulation relat12 ing to section 1882 of the Social Security Act (re13 ferred to in such section as the 1991 NAIC Model 

14 Regulation, as subsequently modified) to conform to 

15 the amendments made by this section, such revised 

16 regulation incorporating the modifications shall be 

17 considered to be the applicable NAIC model regula18 tion (including the revised NAIC model regulation 

19 and the 1991 NAIC Model Regulation) for the pur20 poses of such section. 

21 (3) SECRETARY STANDARDS.—If the NAIC 

22 does not make the modifications described in para23 graph (2) within the period specified in such para24 graph, the Secretary of Health and Human Services 

25 shall, not later than October 1, 2008, make the 


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1 modifications described in such paragraph and such 

2 revised regulation incorporating the modifications 

3 shall be considered to be the appropriate regulation 

4 for the purposes of such section. 

5 (4) DATE SPECIFIED.— 

6 (A) IN GENERAL.—Subject to subpara7 graph (B), the date specified in this paragraph 

8 for a State is the earlier of— 

9 (i) the date the State changes its stat10 utes or regulations to conform its regu11 latory program to the changes made by 

12 this section, or 

13 (ii) October 1, 2008. 

14 (B) ADDITIONAL LEGISLATIVE ACTION RE15 QUIRED.—In the case of a State which the Sec16 retary identifies as— 

17 (i) requiring State legislation (other 

18 than legislation appropriating funds) to 

19 conform its regulatory program to the 

20 changes made in this section, but 

21 (ii) having a legislature which is not 

22 scheduled to meet in 2008 in a legislative 

23 session in which such legislation may be 

24 considered, the date specified in this para25 graph is the first day of the first calendar 


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1 quarter beginning after the close of the 

2 first legislative session of the State legisla3 ture that begins on or after July 1, 2008. 

4 For purposes of the previous sentence, in 

5 the case of a State that has a 2-year legis6 lative session, each year of such session 

7 shall be deemed to be a separate regular 

8 session of the State legislature. 

9 SEC. 104. PRIVACY AND CONFIDENTIALITY. 

10 (a) APPLICABILITY.—Except as provided in sub11 section (d), the provisions of this section shall apply to 

12 group health plans, health insurance issuers (including 

13 issuers in connection with group health plans or individual 

14 health coverage), and issuers of medicare supplemental 

15 policies, without regard to— 

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

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

18 (2) section 2721(a) of the Public Health Serv19 ice Act (42 U.S.C. 300gg–21(a)); and 

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

21 Code of 1986. 

22 (b) COMPLIANCE WITH CERTAIN CONFIDENTIALITY

23 STANDARDS WITH RESPECT TO GENETIC INFORMA24 TION.— 


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1 (1) IN GENERAL.—The regulations promulgated 

2 by the Secretary of Health and Human Services 

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

4 (42 U.S.C. 1320d et seq.) and section 264 of the 

5 Health Insurance Portability and Accountability Act 

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

7 use or disclosure of genetic information. 

8 (2) PROHIBITION ON UNDERWRITING AND PRE9 MIUM RATING.—Notwithstanding paragraph (1), a 

10 group health plan, a health insurance issuer, or 

11 issuer of a medicare supplemental policy shall not 

12 use or disclose genetic information (including infor13 mation about a request for or a receipt of genetic 

14 services by an individual or family member of such 

15 individual) for purposes of underwriting, determina16 tions of eligibility to enroll, premium rating, or the 

17 creation, renewal or replacement of a plan, contract 

18 or coverage for health insurance or health benefits. 

19 (c) PROHIBITION ON COLLECTION OF GENETIC IN20 FORMATION.— 

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

22 insurance issuer, or issuer of a medicare supple23 mental policy shall not request, require, or purchase 

24 genetic information (including information about a 

25 request for or a receipt of genetic services by an inVerDate Aug 31 2005 22:31 Jan 17, 2007 Jkt 059196 PO 00000 Frm 00039 Fmt 6652 Sfmt 6201 E:\BILLS\H493.IH H493

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1 dividual or family member of such individual) for 

2 purposes of underwriting, determinations of eligi3 bility to enroll, premium rating, or the creation, re4 newal or replacement of a plan, contract or coverage 

5 for health insurance or health benefits. 

6 (2) LIMITATION RELATING TO THE COLLEC7 TION OF GENETIC INFORMATION PRIOR TO ENROLL8 MENT.—A group health plan, health insurance 

9 issuer, or issuer of a medicare supplemental policy 

10 shall not request, require, or purchase genetic infor11 mation (including information about a request for or 

12 a receipt of genetic services by an individual or fam13 ily member of such individual) concerning a partici14 pant, beneficiary, or enrollee prior to the enrollment, 

15 and in connection with such enrollment, of such indi16 vidual under the plan, coverage, or policy. 

17 (3) INCIDENTAL COLLECTION.—Where a group 

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

19 medicare supplemental policy obtains genetic infor20 mation incidental to the requesting, requiring, or 

21 purchasing of other information concerning a partic22 ipant, beneficiary, or enrollee, such request, require23 ment, or purchase shall not be considered a violation 

24 of this subsection if— 


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1 (A) such request, requirement, or purchase 

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

3 (B) any genetic information (including in4 formation about a request for or receipt of ge5 netic services) requested, required, or purchased 

6 is not used or disclosed in violation of sub7 section (b). 

8 (d) APPLICATION OF CONFIDENTIALITY STAND9 ARDS.—The provisions of subsections (b) and (c) shall not 

10 apply— 

11 (1) to group health plans, health insurance 

12 issuers, or issuers of medicare supplemental policies 

13 that are not otherwise covered under the regulations 

14 promulgated by the Secretary of Health and Human 

15 Services under part C of title XI of the Social Secu16 rity Act (42 U.S.C. 1320d et seq.) and section 264 

17 of the Health Insurance Portability and Account18 ability Act of 1996 (42 U.S.C. 1320d–2 note); and 

19 (2) to genetic information that is not considered 

20 to be individually-identifiable health information 

21 under the regulations promulgated by the Secretary 

22 of Health and Human Services under part C of title 

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

24 seq.) and section 264 of the Health Insurance PortVerDate Aug 31 2005 22:31 Jan 17, 2007 Jkt 059196 PO 00000 Frm 00041 Fmt 6652 Sfmt 6201 E:\BILLS\H493.IH H493

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1 ability and Accountability Act of 1996 (42 U.S.C. 

2 1320d–2 note). 

3 (e) ENFORCEMENT.—A group health plan, health in4 surance issuer, or issuer of a medicare supplemental policy 

5 that violates a provision of this section shall be subject 

6 to the penalties described in sections 1176 and 1177 of 

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

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

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

10 Act. 

11 (f) PREEMPTION.— 

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

13 under this section or a regulation promulgated under 

14 this section shall supersede any contrary provision of 

15 State law unless such provision of State law imposes 

16 requirements, standards, or implementation speci17 fications that are more stringent than the require18 ments, standards, or implementation specifications 

19 imposed under this section or such regulations. No 

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

21 a State law that is more stringent shall be pre22 empted by this section. 

23 (2) RULE OF CONSTRUCTION.—Nothing in 

24 paragraph (1) shall be construed to establish a pen25 alty, remedy, or cause of action under State law if 


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1 such penalty, remedy, or cause of action is not oth2 erwise available under such State law. 

3 (g) COORDINATION WITH PRIVACY REGULATIONS.— 

4 The Secretary shall implement and administer this section 

5 in a manner that is consistent with the implementation 

6 and administration by the Secretary of the regulations 

7 promulgated by the Secretary of Health and Human Serv8 ices under part C of title XI of the Social Security Act 

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

10 Insurance Portability and Accountability Act of 1996 (42 

11 U.S.C. 1320d–2 note). 

12 (h) DEFINITIONS.—In this section: 

13 (1) GENETIC INFORMATION; GENETIC SERV14 ICES.—The terms ‘‘family member’’, ‘‘genetic infor15 mation’’, ‘‘genetic services’’, and ‘‘genetic test’’ have 

16 the meanings given such terms in section 2791 of 

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

18 91), as amended by this Act. 

19 (2) GROUP HEALTH PLAN; HEALTH INSURANCE

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

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

22 and issuers that are covered under the regulations 

23 described in subsection (d)(1). 

24 (3) ISSUER OF A MEDICARE SUPPLEMENTAL

25 POLICY.—The term ‘‘issuer of a medicare suppleVerDate Aug 31 2005 22:31 Jan 17, 2007 Jkt 059196 PO 00000 Frm 00043 Fmt 6652 Sfmt 6201 E:\BILLS\H493.IH H493

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1 mental policy’’ means an issuer described in section 

2 1882 of the Social Security Act (42 U.S.C. 1395ss). 

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

4 the Secretary of Health and Human Services. 

5 SEC. 105. ASSURING COORDINATION. 

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

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

8 and Human Services, and the Secretary of Labor shall en9 sure, through the execution of an interagency memo10 randum of understanding among such Secretaries, that— 

11 (1) regulations, rulings, and interpretations 

12 issued by such Secretaries relating to the same mat13 ter over which two or more such Secretaries have re14 sponsibility under this title (and the amendments 

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

16 the same effect at all times; and 

17 (2) coordination of policies relating to enforcing 

18 the same requirements through such Secretaries in 

19 order to have a coordinated enforcement strategy 

20 that avoids duplication of enforcement efforts and 

21 assigns priorities in enforcement. 

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

23 of Health and Human Services has the sole authority to 

24 promulgate regulations to implement section 104. 


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1 SEC. 106. REGULATIONS; EFFECTIVE DATE. 

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

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

4 the Secretary of Health and Human Services, and the Sec5 retary of the Treasury shall issue final regulations in an 

6 accessible format to carry out this title. 

7 (b) EFFECTIVE DATE.—Except as provided in sec8 tion 103, the amendments made by this title shall take 

9 effect on the date that is 18 months after the date of en10 actment of this Act. 

11 TITLE II—PROHIBITING EM12 PLOYMENT DISCRIMINATION 

13 ON THE BASIS OF GENETIC 

14 INFORMATION 

15 SEC. 201. DEFINITIONS. 

16 In this title: 

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

18 means the Equal Employment Opportunity Commis19 sion as created by section 705 of the Civil Rights 

20 Act of 1964 (42 U.S.C. 2000e–4). 

21 (2) EMPLOYEE; EMPLOYER; EMPLOYMENT

22 AGENCY; LABOR ORGANIZATION; MEMBER.— 

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

24 means— 

25 (i) an employee (including an appli26 cant), as defined in section 701(f) of the 


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•HR 493 IH

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

2 2000e(f)); 

3 (ii) a State employee (including an ap4 plicant) described in section 304(a) of the 

5 Government Employee Rights Act of 1991 

6 (42 U.S.C. 2000e–16c(a)); 

7 (iii) a covered employee (including an 

8 applicant), as defined in section 101 of the 

9 Congressional Accountability Act of 1995 

10 (2 U.S.C. 1301); 

11 (iv) a covered employee (including an 

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

13 title 3, United States Code; or 

14 (v) an employee or applicant to which 

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

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

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

18 means— 

19 (i) an employer (as defined in section 

20 701(b) of the Civil Rights Act of 1964 (42 

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

22 (ii) an entity employing a State em23 ployee described in section 304(a) of the 

24 Government Employee Rights Act of 1991; 


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•HR 493 IH

1 (iii) an employing office, as defined in 

2 section 101 of the Congressional Account3 ability Act of 1995; 

4 (iv) an employing office, as defined in 

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

6 Code; or 

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

8 of the Civil Rights Act of 1964 applies. 

9 (C) EMPLOYMENT AGENCY; LABOR ORGA10 NIZATION.—The terms ‘‘employment agency’’ 

11 and ‘‘labor organization’’ have the meanings 

12 given the terms in section 701 of the Civil 

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

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

15 respect to a labor organization, includes an ap16 plicant for membership in a labor organization. 

17 (3) FAMILY MEMBER.—The term ‘‘family mem18 ber’’ means with respect to an individual— 

19 (A) the spouse of the individual; 

20 (B) a dependent child of the individual, in21 cluding a child who is born to or placed for 

22 adoption with the individual; and 

23 (C) all other individuals related by blood to 

24 the individual or the spouse or child described 

25 in subparagraph (A) or (B). 


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1 (4) GENETIC INFORMATION.— 

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

3 subparagraph (B), the term ‘‘genetic informa4 tion’’ means information about— 

5 (i) an individual’s genetic tests; 

6 (ii) the genetic tests of family mem7 bers of the individual; or 

8 (iii) the occurrence of a disease or dis9 order in family members of the individual. 

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

12 the sex or age of an individual. 

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

14 monitoring’’ means the periodic examination of em15 ployees to evaluate acquired modifications to their 

16 genetic material, such as chromosomal damage or 

17 evidence of increased occurrence of mutations, that 

18 may have developed in the course of employment due 

19 to exposure to toxic substances in the workplace, in 

20 order to identify, evaluate, and respond to the ef21 fects of or control adverse environmental exposures 

22 in the workplace. 

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

24 services’’ means— 

25 (A) a genetic test; 


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•HR 493 IH

1 (B) genetic counseling (such as obtaining, 

2 interpreting or assessing genetic information); 

3 or 

4 (C) genetic education. 

5 (7) GENETIC TEST.— 

6 (A) IN GENERAL.—The term ‘‘genetic 

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

8 chromosomes, proteins, or metabolites, that de9 tects genotypes, mutations, or chromosomal 

10 changes. 

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

12 does not mean an analysis of proteins or me13 tabolites that does not detect genotypes, 

14 mutations, or chromosomal changes. 

15 SEC. 202. EMPLOYER PRACTICES. 

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

17 unlawful employment practice for an employer— 

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

19 employee, or otherwise to discriminate against any 

20 employee with respect to the compensation, terms, 

21 conditions, or privileges of employment of the em22 ployee, because of genetic information with respect 

23 to the employee (or information about a request for 

24 or the receipt of genetic services by such employee 

25 or family member of such employee); or 


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•HR 493 IH

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

2 of the employer in any way that would deprive or 

3 tend to deprive any employee of employment oppor4 tunities or otherwise adversely affect the status of 

5 the employee as an employee, because of genetic in6 formation with respect to the employee (or informa7 tion about a request for or the receipt of genetic 

8 services by such employee or family member of such 

9 employee). 

10 (b) ACQUISITION OF GENETIC INFORMATION.—It 

11 shall be an unlawful employment practice for an employer 

12 to request, require, or purchase genetic information with 

13 respect to an employee or a family member of the em14 ployee (or information about a request for the receipt of 

15 genetic services by such employee or a family member of 

16 such employee) except— 

17 (1) where an employer inadvertently requests or 

18 requires family medical history of the employee or 

19 family member of the employee; 

20 (2) where— 

21 (A) health or genetic services are offered 

22 by the employer, including such services offered 

23 as part of a bona fide wellness program; 

24 (B) the employee provides prior, knowing, 

25 voluntary, and written authorization; 


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•HR 493 IH

1 (C) only the employee (or family member 

2 if the family member is receiving genetic serv3 ices) and the licensed health care professional 

4 or board certified genetic counselor involved in 

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

7 such services; and 

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

10 connection with the services provided under 

11 subparagraph (A) is only available for purposes 

12 of such services and shall not be disclosed to 

13 the employer except in aggregate terms that do 

14 not disclose the identity of specific employees; 

15 (3) where an employer requests or requires 

16 family medical history from the employee to comply 

17 with the certification provisions of section 103 of the 

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

19 2613) or such requirements under State family and 

20 medical leave laws; 

21 (4) where an employer purchases documents 

22 that are commercially and publicly available (includ23 ing newspapers, magazines, periodicals, and books, 

24 but not including medical databases or court 

25 records) that include family medical history; or 


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

2 for genetic monitoring of the biological effects of 

3 toxic substances in the workplace, but only if— 

4 (A) the employer provides written notice of 

5 the genetic monitoring to the employee; 

6 (B)(i) the employee provides prior, know7 ing, voluntary, and written authorization; or 

8 (ii) the genetic monitoring is required by 

9 Federal or State law; 

10 (C) the employee is informed of individual 

11 monitoring results; 

12 (D) the monitoring is in compliance with— 

13 (i) any Federal genetic monitoring 

14 regulations, including any such regulations 

15 that may be promulgated by the Secretary 

16 of Labor pursuant to the Occupational 

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

18 651 et seq.), the Federal Mine Safety and 

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

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

21 (42 U.S.C. 2011 et seq.); or 

22 (ii) State genetic monitoring regula23 tions, in the case of a State that is imple24 menting genetic monitoring regulations 

25 under the authority of the Occupational 


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•HR 493 IH

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

2 651 et seq.); and 

3 (E) the employer, excluding any licensed 

4 health care professional or board certified ge5 netic counselor that is involved in the genetic 

6 monitoring program, receives the results of the 

7 monitoring only in aggregate terms that do not 

8 disclose the identity of specific employees; 

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

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

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

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

13 (a) or treated or disclosed in a manner that violates sec14 tion 206. 

15 SEC. 203. EMPLOYMENT AGENCY PRACTICES. 

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

17 unlawful employment practice for an employment agen18 cy— 

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

20 otherwise to discriminate against, any individual be21 cause of genetic information with respect to the indi22 vidual (or information about a request for or the re23 ceipt of genetic services by such individual or family 

24 member of such individual); 


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•HR 493 IH

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

2 fail or refuse to refer for employment any individual 

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

4 individual of employment opportunities, or otherwise 

5 adversely affect the status of the individual as an 

6 employee, because of genetic information with re7 spect to the individual (or information about a re8 quest for or the receipt of genetic services by such 

9 individual or family member of such individual); or 

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

11 discriminate against an individual in violation of this 

12 title. 

13 (b) ACQUISITION OF GENETIC INFORMATION.—It 

14 shall be an unlawful employment practice for an employ15 ment agency to request, require, or purchase genetic infor16 mation with respect to an individual or a family member 

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

18 receipt of genetic services by such individual or a family 

19 member of such individual) except— 

20 (1) where an employment agency inadvertently 

21 requests or requires family medical history of the in22 dividual or family member of the individual; 

23 (2) where— 

24 (A) health or genetic services are offered 

25 by the employment agency, including such servVerDate Aug 31 2005 22:31 Jan 17, 2007 Jkt 059196 PO 00000 Frm 00054 Fmt 6652 Sfmt 6201 E:\BILLS\H493.IH H493

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•HR 493 IH

1 ices offered as part of a bona fide wellness pro2 gram; 

3 (B) the individual provides prior, knowing, 

4 voluntary, and written authorization; 

5 (C) only the individual (or family member 

6 if the family member is receiving genetic serv7 ices) and the licensed health care professional 

8 or board certified genetic counselor involved in 

9 providing such services receive individually iden10 tifiable information concerning the results of 

11 such services; and 

12 (D) any individually identifiable genetic in13 formation provided under subparagraph (C) in 

14 connection with the services provided under 

15 subparagraph (A) is only available for purposes 

16 of such services and shall not be disclosed to 

17 the employment agency except in aggregate 

18 terms that do not disclose the identity of spe19 cific individuals; 

20 (3) where an employment agency requests or re21 quires family medical history from the individual to 

22 comply with the certification provisions of section 

23 103 of the Family and Medical Leave Act of 1993 

24 (29 U.S.C. 2613) or such requirements under State 

25 family and medical leave laws; 


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•HR 493 IH

1 (4) where an employment agency purchases 

2 documents that are commercially and publicly avail3 able (including newspapers, magazines, periodicals, 

4 and books, but not including medical databases or 

5 court records) that include family medical history; or 

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

7 for genetic monitoring of the biological effects of 

8 toxic substances in the workplace, but only if— 

9 (A) the employment agency provides writ10 ten notice of the genetic monitoring to the indi11 vidual; 

12 (B)(i) the individual provides prior, know13 ing, voluntary, and written authorization; or 

14 (ii) the genetic monitoring is required by 

15 Federal or State law; 

16 (C) the individual is informed of individual 

17 monitoring results; 

18 (D) the monitoring is in compliance with— 

19 (i) any Federal genetic monitoring 

20 regulations, including any such regulations 

21 that may be promulgated by the Secretary 

22 of Labor pursuant to the Occupational 

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

24 651 et seq.), the Federal Mine Safety and 

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


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•HR 493 IH

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

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

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

6 under the authority of the Occupational 

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

8 651 et seq.); and 

9 (E) the employment agency, excluding any 

10 licensed health care professional or board cer11 tified genetic counselor that is involved in the 

12 genetic monitoring program, receives the results 

13 of the monitoring only in aggregate terms that 

14 do not disclose the identity of specific individ15 uals; 

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. 204. LABOR ORGANIZATION PRACTICES. 

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

24 unlawful employment practice for a labor organization— 


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•HR 493 IH

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

2 of the organization, or otherwise to discriminate 

3 against, any member because of genetic information 

4 with respect to the member (or information about a 

5 request for or the receipt of genetic services by such 

6 member or family member of such member); 

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

8 of the organization, or fail or refuse to refer for em9 ployment any member, in any way that would de10 prive or tend to deprive any member of employment 

11 opportunities, or otherwise adversely affect the sta12 tus of the member as an employee, because of ge13 netic information with respect to the member (or in14 formation about a request for or the receipt of ge15 netic services by such member or family member of 

16 such member); or 

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

18 discriminate against a member in violation of this 

19 title. 

20 (b) ACQUISITION OF GENETIC INFORMATION.—It 

21 shall be an unlawful employment practice for a labor orga22 nization to request, require, or purchase genetic informa23 tion with respect to a member or a family member of the 

24 member (or information about a request for the receipt 


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•HR 493 IH

1 of genetic services by such member or a family member 

2 of such member) except— 

3 (1) where a labor organization inadvertently re4 quests or requires family medical history of the 

5 member or family member of the member; 

6 (2) where— 

7 (A) health or genetic services are offered 

8 by the labor organization, including such serv9 ices offered as part of a bona fide wellness pro10 gram; 

11 (B) the member provides prior, knowing, 

12 voluntary, and written authorization; 

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

14 the family member is receiving genetic services) 

15 and the licensed health care professional or 

16 board certified genetic counselor involved in 

17 providing such services receive individually iden18 tifiable information concerning the results of 

19 such services; and 

20 (D) any individually identifiable genetic in21 formation provided under subparagraph (C) in 

22 connection with the services provided under 

23 subparagraph (A) is only available for purposes 

24 of such services and shall not be disclosed to 

25 the labor organization except in aggregate 


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•HR 493 IH

1 terms that do not disclose the identity of spe2 cific members; 

3 (3) where a labor organization requests or re4 quires family medical history from the members to 

5 comply with the certification provisions of section 

6 103 of the Family and Medical Leave Act of 1993 

7 (29 U.S.C. 2613) or such requirements under State 

8 family and medical leave laws; 

9 (4) where a labor organization purchases docu10 ments that are commercially and publicly available 

11 (including newspapers, magazines, periodicals, and 

12 books, but not including medical databases or court 

13 records) that include family medical history; or 

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

15 for genetic monitoring of the biological effects of 

16 toxic substances in the workplace, but only if— 

17 (A) the labor organization provides written 

18 notice of the genetic monitoring to the member; 

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

20 voluntary, and written authorization; or 

21 (ii) the genetic monitoring is required by 

22 Federal or State law; 

23 (C) the member is informed of individual 

24 monitoring results; 

25 (D) the monitoring is in compliance with— 


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•HR 493 IH

1 (i) any Federal genetic monitoring 

2 regulations, including any such regulations 

3 that may be promulgated by the Secretary 

4 of Labor pursuant to the Occupational 

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

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

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

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

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

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

13 under the authority of the Occupational 

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

15 651 et seq.); and 

16 (E) the labor organization, excluding any 

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

19 genetic monitoring program, receives the results 

20 of the monitoring only in aggregate terms that 

21 do not disclose the identity of specific members; 

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

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

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

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


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•HR 493 IH

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

3 SEC. 205. TRAINING PROGRAMS. 

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

5 unlawful employment practice for any employer, labor or6 ganization, or joint labor-management committee control7 ling apprenticeship or other training or retraining, includ8 ing on-the-job training programs— 

9 (1) to discriminate against any individual be10 cause of genetic information with respect to the indi11 vidual (or information about a request for or the re12 ceipt of genetic services by such individual or a fam13 ily member of such individual) in admission to, or 

14 employment in, any program established to provide 

15 apprenticeship or other training or retraining; 

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

17 for or participants in such apprenticeship or other 

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

19 employment any individual, in any way that would 

20 deprive or tend to deprive any individual of employ21 ment opportunities, or otherwise adversely affect the 

22 status of the individual as an employee, because of 

23 genetic information with respect to the individual (or 

24 information about a request for or receipt of genetic 


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63 

•HR 493 IH

1 services by such individual or family member of such 

2 individual); or 

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

4 discriminate against an applicant for or a partici5 pant in such apprenticeship or other training or re6 training in violation of this title. 

7 (b) ACQUISITION OF GENETIC INFORMATION.—It 

8 shall be an unlawful employment practice for an employer, 

9 labor organization, or joint labor-management committee 

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

11 genetic information with respect to an individual or a fam12 ily member of the individual (or information about a re13 quest for the receipt of genetic services by such individual 

14 or a family member of such individual) except— 

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

16 joint labor-management committee inadvertently re17 quests or requires family medical history of the indi18 vidual or family member of the individual; 

19 (2) where— 

20 (A) health or genetic services are offered 

21 by the employer, labor organization, or joint 

22 labor-management committee, including such 

23 services offered as part of a bona fide wellness 

24 program; 


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•HR 493 IH

1 (B) the individual provides prior, knowing, 

2 voluntary, and written authorization; 

3 (C) only the individual (or family member 

4 if the family member is receiving genetic serv5 ices) and the licensed health care professional 

6 or board certified genetic counselor involved in 

7 providing such services receive individually iden8 tifiable information concerning the results of 

9 such services; 

10 (D) any individually identifiable genetic in11 formation provided under subparagraph (C) in 

12 connection with the services provided under 

13 subparagraph (A) is only available for purposes 

14 of such services and shall not be disclosed to 

15 the employer, labor organization, or joint labor16 management committee except in aggregate 

17 terms that do not disclose the identity of spe18 cific individuals; 

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

20 joint labor-management committee requests or re21 quires family medical history from the individual to 

22 comply with the certification provisions of section 

23 103 of the Family and Medical Leave Act of 1993 

24 (29 U.S.C. 2613) or such requirements under State 

25 family and medical leave laws; 


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•HR 493 IH

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

2 joint labor-management committee purchases docu3 ments that are commercially and publicly available 

4 (including newspapers, magazines, periodicals, and 

5 books, but not including medical databases or court 

6 records) that include family medical history; or 

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

8 for genetic monitoring of the biological effects of 

9 toxic substances in the workplace, but only if— 

10 (A) the employer, labor organization, or 

11 joint labor-management committee provides 

12 written notice of the genetic monitoring to the 

13 individual; 

14 (B)(i) the individual provides prior, know15 ing, voluntary, and written authorization; or 

16 (ii) the genetic monitoring is required by 

17 Federal or State law; 

18 (C) the individual is informed of individual 

19 monitoring results; 

20 (D) the monitoring is in compliance with— 

21 (i) any Federal genetic monitoring 

22 regulations, including any such regulations 

23 that may be promulgated by the Secretary 

24 of Labor pursuant to the Occupational 

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


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•HR 493 IH

1 651 et seq.), the Federal Mine Safety and 

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

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

4 (42 U.S.C. 2011 et seq.); or 

5 (ii) State genetic monitoring regula6 tions, in the case of a State that is imple7 menting genetic monitoring regulations 

8 under the authority of the Occupational 

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

10 651 et seq.); and 

11 (E) the employer, labor organization, or 

12 joint labor-management committee, excluding 

13 any licensed health care professional or board 

14 certified genetic counselor that is involved in 

15 the genetic monitoring program, receives the re16 sults of the monitoring only in aggregate terms 

17 that do not disclose the identity of specific indi18 viduals; 

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

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

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

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

23 (a) or treated or disclosed in a manner that violates sec24 tion 206. 


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•HR 493 IH

1 SEC. 206. CONFIDENTIALITY OF GENETIC INFORMATION. 

2 (a) TREATMENT OF INFORMATION AS PART OF CON3 FIDENTIAL MEDICAL RECORD.—If an employer, employ4 ment agency, labor organization, or joint labor-manage5 ment committee possesses genetic information about an 

6 employee or member (or information about a request for 

7 or receipt of genetic services by such employee or member 

8 or family member of such employee or member), such in9 formation shall be maintained on separate forms and in 

10 separate medical files and be treated as a confidential 

11 medical record of the employee or member. 

12 (b) LIMITATION ON DISCLOSURE.—An employer, em13 ployment agency, labor organization, or joint labor-man14 agement committee shall not disclose genetic information 

15 concerning an employee or member (or information about 

16 a request for or receipt of genetic services by such em17 ployee or member or family member of such employee or 

18 member) except— 

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

20 family member is receiving the genetic services) or 

21 member of a labor organization at the request of the 

22 employee or member of such organization; 

23 (2) to an occupational or other health re24 searcher if the research is conducted in compliance 

25 with the regulations and protections provided for 


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•HR 493 IH

1 under part 46 of title 45, Code of Federal Regula2 tions; 

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

4 that— 

5 (A) the employer, employment agency, 

6 labor organization, or joint labor-management 

7 committee may disclose only the genetic infor8 mation expressly authorized by such order; and 

9 (B) if the court order was secured without 

10 the knowledge of the employee or member to 

11 whom the information refers, the employer, em12 ployment agency, labor organization, or joint 

13 labor-management committee shall provide the 

14 employee or member with adequate notice to 

15 challenge the court order; 

16 (4) to government officials who are inves17 tigating compliance with this title if the information 

18 is relevant to the investigation; or 

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

20 in connection with the employee’s compliance with 

21 the certification provisions of section 103 of the 

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

23 2613) or such requirements under State family and 

24 medical leave laws. 


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•HR 493 IH

1 SEC. 207. REMEDIES AND ENFORCEMENT. 

2 (a) EMPLOYEES COVERED BY TITLE VII OF THE

3 CIVIL RIGHTS ACT OF 1964.— 

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

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

6 710, and 711 of the Civil Rights Act of 1964 (42 

7 U.S.C. 2000e–4 et seq.) to the Commission, the At8 torney General, or any person, alleging a violation of 

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

10 be the powers, remedies, and procedures this title 

11 provides to the Commission, the Attorney General, 

12 or any person, respectively, alleging an unlawful em13 ployment practice in violation of this title against an 

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

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

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

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

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

19 1988), shall be powers, remedies, and procedures 

20 this title provides to the Commission, the Attorney 

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

22 (3) DAMAGES.—The powers, remedies, and pro23 cedures provided in section 1977A of the Revised 

24 Statutes (42 U.S.C. 1981a), including the limita25 tions contained in subsection (b)(3) of such section 

26 1977A, shall be powers, remedies, and procedures 


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1 this title provides to the Commission, the Attorney 

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

3 an employment practice specifically excluded from 

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

5 Statutes). 

6 (b) EMPLOYEES COVERED BY GOVERNMENT EM7 PLOYEE RIGHTS ACT OF 1991.— 

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

9 procedures provided in sections 302 and 304 of the 

10 Government Employee Rights Act of 1991 (42 

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

12 or any person, alleging a violation of section 

13 302(a)(1) of that Act (42 U.S.C. 2000e–16b(a)(1)) 

14 shall be the powers, remedies, and procedures this 

15 title provides to the Commission, or any person, re16 spectively, alleging an unlawful employment practice 

17 in violation of this title against an employee de18 scribed in section 201(2)(A)(ii), except as provided 

19 in paragraphs (2) and (3). 

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

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

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

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

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

25 alleging such a practice. 


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1 (3) DAMAGES.—The powers, remedies, and pro2 cedures provided in section 1977A of the Revised 

3 Statutes (42 U.S.C. 1981a), including the limita4 tions contained in subsection (b)(3) of such section 

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

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

7 alleging such a practice (not an employment practice 

8 specifically excluded from coverage under section 

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

10 (c) EMPLOYEES COVERED BY CONGRESSIONAL AC11 COUNTABILITY ACT OF 1995.— 

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

13 procedures provided in the Congressional Account14 ability Act of 1995 (2 U.S.C. 1301 et seq.) to the 

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

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

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

18 shall be the powers, remedies, and procedures this 

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

20 an unlawful employment practice in violation of this 

21 title against an employee described in section 

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

23 and (3). 

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

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


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

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

3 this title provides to that Board, or any person, al4 leging such a practice. 

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

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

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

10 this title provides to that Board, or any person, al11 leging such a practice (not an employment practice 

12 specifically excluded from coverage under section 

13 1977A(a)(1) of the Revised Statutes). 

14 (4) OTHER APPLICABLE PROVISIONS.—With re15 spect to a claim alleging a practice described in 

16 paragraph (1), title III of the Congressional Ac17 countability Act of 1995 (2 U.S.C. 1381 et seq.) 

18 shall apply in the same manner as such title applies 

19 with respect to a claim alleging a violation of section 

20 201(a)(1) of such Act (2 U.S.C. 1311(a)(1)). 

21 (d) EMPLOYEES COVERED BY CHAPTER 5 OF TITLE

22 3, UNITED STATES CODE.— 

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

24 procedures provided in chapter 5 of title 3, United 

25 States Code, to the President, the Commission, the 


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1 Merit Systems Protection Board, or any person, al2 leging a violation of section 411(a)(1) of that title, 

3 shall be the powers, remedies, and procedures this 

4 title provides to the President, the Commission, such 

5 Board, or any person, respectively, alleging an un6 lawful employment practice in violation of this title 

7 against an employee described in section 

8 201(2)(A)(iv), except as provided in paragraphs (2) 

9 and (3). 

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

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

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

13 1988), shall be powers, remedies, and procedures 

14 this title provides to the President, the Commission, 

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

16 (3) DAMAGES.—The powers, remedies, and pro17 cedures provided in section 1977A of the Revised 

18 Statutes (42 U.S.C. 1981a), including the limita19 tions contained in subsection (b)(3) of such section 

20 1977A, shall be powers, remedies, and procedures 

21 this title provides to the President, the Commission, 

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

23 (not an employment practice specifically excluded 

24 from coverage under section 1977A(a)(1) of the Re25 vised Statutes). 


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1 (e) EMPLOYEES COVERED BY SECTION 717 OF THE

2 CIVIL RIGHTS ACT OF 1964.— 

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

4 procedures provided in section 717 of the Civil 

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

6 Commission, the Attorney General, the Librarian of 

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

8 section shall be the powers, remedies, and proce9 dures this title provides to the Commission, the At10 torney General, the Librarian of Congress, or any 

11 person, respectively, alleging an unlawful employ12 ment practice in violation of this title against an em13 ployee or applicant described in section 

14 201(2)(A)(v), except as provided in paragraphs (2) 

15 and (3). 

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

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

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

19 1988), shall be powers, remedies, and procedures 

20 this title provides to the Commission, the Attorney 

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

22 alleging such a practice. 

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

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

2 1977A, shall be powers, remedies, and procedures 

3 this title provides to the Commission, the Attorney 

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

5 alleging such a practice (not an employment practice 

6 specifically excluded from coverage under section 

7 1977A(a)(1) of the Revised Statutes). 

8 (f) DEFINITION.—In this section, the term ‘‘Commis9 sion’’ means the Equal Employment Opportunity Commis10 sion. 

11 SEC. 208. DISPARATE IMPACT. 

12 (a) GENERAL RULE.—Notwithstanding any other 

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

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

15 (42 U.S.C. 2000e–2(k)), on the basis of genetic informa16 tion does not establish a cause of action under this Act. 

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

18 the date of enactment of this Act, there shall be estab19 lished a commission, to be known as the Genetic Non20 discrimination Study Commission (referred to in this sec21 tion as the ‘‘Commission’’) to review the developing 

22 science of genetics and to make recommendations to Con23 gress regarding whether to provide a disparate impact 

24 cause of action under this Act. 

25 (c) MEMBERSHIP.— 


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

2 composed of 8 members, of which— 

3 (A) 1 member shall be appointed by the 

4 Majority Leader of the Senate; 

5 (B) 1 member shall be appointed by the 

6 Minority Leader of the Senate; 

7 (C) 1 member shall be appointed by the 

8 Chairman of the Committee on Health, Edu9 cation, Labor, and Pensions of the Senate; 

10 (D) 1 member shall be appointed by the 

11 ranking minority member of the Committee on 

12 Health, Education, Labor, and Pensions of the 

13 Senate; 

14 (E) 1 member shall be appointed by the 

15 Speaker of the House of Representatives; 

16 (F) 1 member shall be appointed by the 

17 Minority Leader of the House of Representa18 tives; 

19 (G) 1 member shall be appointed by the 

20 Chairman of the Committee on Education and 

21 the Workforce of the House of Representatives; 

22 and 

23 (H) 1 member shall be appointed by the 

24 ranking minority member of the Committee on 


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1 Education and the Workforce of the House of 

2 Representatives. 

3 (2) COMPENSATION AND EXPENSES.—The 

4 members of the Commission shall not receive com5 pensation for the performance of services for the 

6 Commission, but shall be allowed travel expenses, in7 cluding per diem in lieu of subsistence, at rates au8 thorized for employees of agencies under subchapter 

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

10 away from their homes or regular places of business 

11 in the performance of services for the Commission. 

12 (d) ADMINISTRATIVE PROVISIONS.— 

13 (1) LOCATION.—The Commission shall be lo14 cated in a facility maintained by the Equal Employ15 ment Opportunity Commission. 

16 (2) DETAIL OF GOVERNMENT EMPLOYEES.— 

17 Any Federal Government employee may be detailed 

18 to the Commission without reimbursement, and such 

19 detail shall be without interruption or loss of civil 

20 service status or privilege. 

21 (3) INFORMATION FROM FEDERAL AGENCIES.— 

22 The Commission may secure directly from any Fed23 eral department or agency such information as the 

24 Commission considers necessary to carry out the 

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1 mission, the head of such department or agency 

2 shall furnish such information to the Commission. 

3 (4) HEARINGS.—The Commission may hold 

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

5 take such testimony, and receive such evidence as 

6 the Commission considers advisable to carry out the 

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

8 possible, the Commission shall use existing data and 

9 research. 

10 (5) POSTAL SERVICES.—The Commission may 

11 use the United States mails in the same manner and 

12 under the same conditions as other departments and 

13 agencies of the Federal Government. 

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

15 members are appointed to the Commission under sub16 section (c)(1), the Commission shall submit to Congress 

17 a report that summarizes the findings of the Commission 

18 and makes such recommendations for legislation as are 

19 consistent with this Act. 

20 (f) AUTHORIZATION OF APPROPRIATIONS.—There 

21 are authorized to be appropriated to the Equal Employ22 ment Opportunity Commission such sums as may be nec23 essary to carry out this section. 

24 SEC. 209. CONSTRUCTION. 

25 Nothing in this title shall be construed to— 


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1 (1) limit the rights or protections of an indi2 vidual under the Americans with Disabilities Act of 

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

4 afforded to individuals under section 102 of such 

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

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

7 (2)(A) limit the rights or protections of an indi8 vidual to bring an action under this title against an 

9 employer, employment agency, labor organization, or 

10 joint labor-management committee for a violation of 

11 this title; or 

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

13 employer, employment agency, labor organization, or 

14 joint labor-management committee of a provision of 

15 the amendments made by title I; 

16 (3) limit the rights or protections of an indi17 vidual under any other Federal or State statute that 

18 provides equal or greater protection to an individual 

19 than the rights or protections provided for under 

20 this title; 

21 (4) apply to the Armed Forces Repository of 

22 Specimen Samples for the Identification of Remains; 

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

24 obligations of employees or employers under applica25 ble workers’ compensation laws; 


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1 (6) limit the authority of a Federal department 

2 or agency to conduct or sponsor occupational or 

3 other health research that is conducted in compli4 ance with the regulations contained in part 46 of 

5 title 45, Code of Federal Regulations (or any cor6 responding or similar regulation or rule); and 

7 (7) limit the statutory or regulatory authority 

8 of the Occupational Safety and Health Administra9 tion or the Mine Safety and Health Administration 

10 to promulgate or enforce workplace safety and 

11 health laws and regulations. 

12 SEC. 210. MEDICAL INFORMATION THAT IS NOT GENETIC 

13 INFORMATION. 

14 An employer, employment agency, labor organization, 

15 or joint labor-management committee shall not be consid16 ered to be in violation of this title based on the use, acqui17 sition, or disclosure of medical information that is not ge18 netic information about a manifested disease, disorder, or 

19 pathological condition of an employee or member, includ20 ing a manifested disease, disorder, or pathological condi21 tion that has or may have a genetic basis. 

22 SEC. 211. REGULATIONS. 

23 Not later than 1 year after the date of enactment 

24 of this title, the Commission shall issue final regulations 

25 in an accessible format to carry out this title. 


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1 SEC. 212. AUTHORIZATION OF APPROPRIATIONS. 

2 There are authorized to be appropriated such sums 

3 as may be necessary to carry out this title (except for sec4 tion 208). 

5 SEC. 213. EFFECTIVE DATE. 

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

7 after the date of enactment of this Act. 

8 TITLE III—MISCELLANEOUS 

9 PROVISION 

10 SEC. 301. SEVERABILITY. 

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

12 this Act, or the application of such provision or amend13 ment to any person or circumstance is held to be unconsti14 tutional, the remainder of this Act, the amendments made 

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

16 person or circumstance shall not be affected thereby. 

Æ 


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