II 
Calendar No. 125 
110TH CONGRESS 
1ST SESSION 
H. R. 493 
IN THE SENATE OF THE UNITED STATES 
APRIL 26, 2007 
Received and read the first time 
APRIL 30, 2007 
Read the second time and placed on the calendar 
AN ACT 
To prohibit discrimination on the basis of genetic information 
with respect to health insurance and employment. 
Be it enacted by the Senate and House of Representa-
tives of the United States of America in Congress assembled, 
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SECTION 1. SHORT TITLE; TABLE OF CONTENTS. 
(a) SHORT TITLE.—This Act may be cited as the 
‘‘Genetic Information Nondiscrimination Act of 2007’’. 
(b) TABLE OF CONTENTS.—The table of contents of 
this Act is as follows: 
Sec. 1. Short title; table of contents. 
Sec. 2. Findings. 
TITLE I—GENETIC NONDISCRIMINATION IN HEALTH INSURANCE 
Sec. 101. Amendments to Employee Retirement Income Security Act of 1974. 
Sec. 102. Amendments to the Public Health Service Act. 
Sec. 103. Amendments to the Internal Revenue Code of 1986. 
Sec. 104. Amendments to title XVIII of the Social Security Act relating to 
medigap. 
Sec. 105. Privacy and confidentiality. 
Sec. 106. Assuring coordination. 
TITLE II—PROHIBITING EMPLOYMENT DISCRIMINATION ON THE 
BASIS OF GENETIC INFORMATION 
Sec. 201. Definitions. 
Sec. 202. Employer practices. 
Sec. 203. Employment agency practices. 
Sec. 204. Labor organization practices. 
Sec. 205. Training programs. 
Sec. 206. Confidentiality of genetic information. 
Sec. 207. Remedies and enforcement. 
Sec. 208. Disparate impact. 
Sec. 209. Construction. 
Sec. 210. Medical information that is not genetic information. 
Sec. 211. Regulations. 
Sec. 212. Authorization of appropriations. 
Sec. 213. Effective date. 
TITLE III—MISCELLANEOUS PROVISIONS 
Sec. 301. Guarantee agency collection retention. 
Sec. 302. Severability. 
SEC. 2. FINDINGS. 
Congress makes the following findings: 
(1) Deciphering the sequence of the human ge-
nome and other advances in genetics open major 
new opportunities for medical progress. New knowl-
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edge about the genetic basis of illness will allow for 
earlier detection of illnesses, often before symptoms 
have begun. Genetic testing can allow individuals to 
take steps to reduce the likelihood that they will con-
tract a particular disorder. New knowledge about ge-
netics may allow for the development of better thera-
pies that are more effective against disease or have 
fewer side effects than current treatments. These 
advances give rise to the potential misuse of genetic 
information to discriminate in health insurance and 
employment. 
(2) The early science of genetics became the 
basis of State laws that provided for the sterilization 
of persons having presumed genetic ‘‘defects’’ such 
as mental retardation, mental disease, epilepsy, 
blindness, and hearing loss, among other conditions. 
The first sterilization law was enacted in the State 
of Indiana in 1907. By 1981, a majority of States 
adopted sterilization laws to ‘‘correct’’ apparent ge-
netic traits or tendencies. Many of these State laws 
have since been repealed, and many have been modi-
fied to include essential constitutional requirements 
of due process and equal protection. However, the 
current explosion in the science of genetics, and the 
history of sterilization laws by the States based on 
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early genetic science, compels Congressional action 
in this area. 
(3) Although genes are facially neutral markers, 
many genetic conditions and disorders are associated 
with particular racial and ethnic groups and gender. 
Because some genetic traits are most prevalent in 
particular groups, members of a particular group 
may be stigmatized or discriminated against as a re-
sult of that genetic information. This form of dis-
crimination was evident in the 1970s, which saw the 
advent of programs to screen and identify carriers of 
sickle cell anemia, a disease which afflicts African- 
Americans. Once again, State legislatures began to 
enact discriminatory laws in the area, and in the 
early 1970s began mandating genetic screening of 
all African Americans for sickle cell anemia, leading 
to discrimination and unnecessary fear. To alleviate 
some of this stigma, Congress in 1972 passed the 
National Sickle Cell Anemia Control Act, which 
withholds Federal funding from States unless sickle 
cell testing is voluntary. 
(4) Congress has been informed of examples of 
genetic discrimination in the workplace. These in-
clude the use of pre-employment genetic screening at 
Lawrence Berkeley Laboratory, which led to a court 
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decision in favor of the employees in that case Nor-
man-Bloodsaw v. Lawrence Berkeley Laboratory 
(135 F.3d 1260, 1269 (9th Cir. 1998)). Congress 
clearly has a compelling public interest in relieving 
the fear of discrimination and in prohibiting its ac-
tual practice in employment and health insurance. 
(5) Federal law addressing genetic discrimina-
tion in health insurance and employment is incom-
plete in both the scope and depth of its protections. 
Moreover, while many States have enacted some type 
of genetic non-discrimination law, these laws vary 
widely with respect to their approach, application, 
and level of protection. Congress has collected sub-
stantial evidence that the American public and the 
medical community find the existing patchwork of 
State and Federal laws to be confusing and inad-
equate to protect them from discrimination. There-
fore Federal legislation establishing a national and 
uniform basic standard is necessary to fully protect 
the public from discrimination and allay their con-
cerns about the potential for discrimination, thereby 
allowing individuals to take advantage of genetic 
testing, technologies, research, and new therapies. 
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TITLE 
I—GENETIC 
NON-
DISCRIMINATION IN HEALTH 
INSURANCE 
SEC. 101. AMENDMENTS TO EMPLOYEE RETIREMENT IN-
COME SECURITY ACT OF 1974. 
(a) NO
DISCRIMINATION
IN
GROUP
PREMIUMS 
BASED ON GENETIC INFORMATION.—Section 702(b) of 
the Employee Retirement Income Security Act of 1974 
(29 U.S.C. 1182(b)) is amended— 
(1) in paragraph (2)(A), by inserting before the 
semicolon the following: ‘‘except as provided in para-
graph (3)’’; and 
(2) by adding at the end the following: 
‘‘(3) NO
GROUP-BASED
DISCRIMINATION
ON 
BASIS OF GENETIC INFORMATION.—For purposes of 
this section, a group health plan, and a health insur-
ance issuer offering group health insurance coverage 
in connection with a group health plan, may not ad-
just premium or contribution amounts for the group 
covered under such plan on the basis of genetic in-
formation.’’. 
(b) LIMITATIONS ON GENETIC TESTING; PROHIBI-
TION ON COLLECTION OF GENETIC INFORMATION; APPLI-
CATION TO ALL PLANS.—Section 702 of the Employee 
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Retirement Income Security Act of 1974 (29 U.S.C. 1182) 
is amended by adding at the end the following: 
‘‘(c) GENETIC TESTING.— 
‘‘(1) LIMITATION ON REQUESTING OR REQUIR-
ING GENETIC TESTING.—A group health plan, and a 
health insurance issuer offering health insurance 
coverage in connection with a group health plan, 
shall not request or require an individual or a family 
member of such individual to undergo a genetic test. 
‘‘(2) RULE OF CONSTRUCTION.—Paragraph (1) 
shall not be construed to limit the authority of a 
health care professional who is providing health care 
services to an individual to request that such indi-
vidual undergo a genetic test. 
‘‘(3) RULE OF CONSTRUCTION REGARDING PAY-
MENT.— 
‘‘(A) IN GENERAL.—Nothing in paragraph 
(1) shall be construed to preclude a group 
health plan, or a health insurance issuer offer-
ing health insurance coverage in connection 
with a group health plan, from obtaining and 
using the results of a genetic test in making a 
determination regarding payment (as such term 
is defined for the purposes of applying the regu-
lations promulgated by the Secretary of Health 
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and Human Services under part C of title XI 
of the Social Security Act and section 264 of 
the Health Insurance Portability and Account-
ability Act of 1996, as may be revised from 
time to time) consistent with subsection (a). 
‘‘(B) LIMITATION.—For purposes of sub-
paragraph (A), a group health plan, or a health 
insurance issuer offering health insurance cov-
erage in connection with a group health plan, 
may request only the minimum amount of in-
formation necessary to accomplish the intended 
purpose. 
‘‘(4) RESEARCH EXCEPTION.—Notwithstanding 
paragraph (1), a group health plan, or a health in-
surance issuer offering health insurance coverage in 
connection with a group health plan, may request, 
but not require, that a participant or beneficiary un-
dergo a genetic test if each of the following condi-
tions is met: 
‘‘(A) The request is made, in writing, pur-
suant to research that complies with part 46 of 
title 45, Code of Federal Regulations, or equiv-
alent Federal regulations, and any applicable 
State or local law or regulations for the protec-
tion of human subjects in research. 
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‘‘(B) The plan or issuer clearly indicates to 
each participant or beneficiary, or in the case of 
a minor child, to the legal guardian of such 
beneficiary, to whom the request is made that— 
‘‘(i) compliance with the request is 
voluntary; and 
‘‘(ii) non-compliance will have no ef-
fect on enrollment status or premium or 
contribution amounts. 
‘‘(C) No genetic information collected or 
acquired under this paragraph shall be used for 
underwriting purposes. 
‘‘(D) The plan or issuer notifies the Sec-
retary in writing that the plan or issuer is con-
ducting activities pursuant to the exception pro-
vided for under this paragraph, including a de-
scription of the activities conducted. 
‘‘(E) The plan or issuer complies with such 
other conditions as the Secretary may by regu-
lation require for activities conducted under this 
paragraph. 
‘‘(d) PROHIBITION ON COLLECTION OF GENETIC IN-
FORMATION.— 
‘‘(1) IN GENERAL.—A group health plan, and a 
health insurance issuer offering health insurance 
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coverage in connection with a group health plan, 
shall not request, require, or purchase genetic infor-
mation for underwriting purposes (as defined in sec-
tion 733). 
‘‘(2) PROHIBITION
ON
COLLECTION
OF
GE-
NETIC
INFORMATION
PRIOR
TO
ENROLLMENT.—A 
group health plan, and a health insurance issuer of-
fering health insurance coverage in connection with 
a group health plan, shall not request, require, or 
purchase genetic information with respect to any in-
dividual prior to such individual’s enrollment under 
the plan or coverage in connection with such enroll-
ment. 
‘‘(3) INCIDENTAL
COLLECTION.—If a group 
health plan, or a health insurance issuer offering 
health insurance coverage in connection with a group 
health plan, obtains genetic information incidental to 
the requesting, requiring, or purchasing of other in-
formation concerning any individual, such request, 
requirement, or purchase shall not be considered a 
violation of paragraph (2) if such request, require-
ment, or purchase is not in violation of paragraph 
(1). 
‘‘(e) APPLICATION TO ALL PLANS.—The provisions 
of subsections (a)(1)(F), (b)(3), (c), and (d), and sub-
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section (b)(1) and section 701 with respect to genetic in-
formation, shall apply to group health plans and health 
insurance issuers without regard to section 732(a).’’. 
(c) APPLICATION TO GENETIC INFORMATION OF A 
FETUS OR EMBRYO.—Such section is further amended by 
adding at the end the following: 
‘‘(f) GENETIC INFORMATION OF A FETUS OR EM-
BRYO.—Any reference in this part to genetic information 
concerning an individual or family member of an indi-
vidual shall— 
‘‘(1) with respect to such an individual or fam-
ily member of an individual who is a pregnant 
woman, include genetic information of any fetus car-
ried by such pregnant woman; and 
‘‘(2) with respect to an individual or family 
member utilizing an assisted reproductive tech-
nology, include genetic information of any embryo le-
gally held by the individual or family member.’’. 
(d) DEFINITIONS.—Section 733(d) of the Employee 
Retirement Income Security Act of 1974 (29 U.S.C. 
1191b(d)) is amended by adding at the end the following: 
‘‘(5) FAMILY
MEMBER.—The term ‘family 
member’ means, with respect to an individual— 
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‘‘(A) a dependent (as such term is used for 
purposes of section 701(f)(2)) of such indi-
vidual, and 
‘‘(B) any other individual who is a first-de-
gree, second-degree, third-degree, or fourth-de-
gree relative of such individual or of an indi-
vidual described in subparagraph (A). 
‘‘(6) GENETIC INFORMATION.— 
‘‘(A) IN GENERAL.—The term ‘genetic in-
formation’ means, with respect to any indi-
vidual, information about— 
‘‘(i) such individual’s genetic tests, 
‘‘(ii) the genetic tests of family mem-
bers of such individual, and 
‘‘(iii) subject to subparagraph (D), 
the manifestation of a disease or disorder 
in family members of such individual. 
‘‘(B) INCLUSION OF GENETIC SERVICES.— 
Such term includes, with respect to any indi-
vidual, any request for, or receipt of, genetic 
services (including genetic services received pur-
suant to participation in clinical research) by 
such individual or any family member of such 
individual. 
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‘‘(C) EXCLUSIONS.—The term ‘genetic in-
formation’ shall not include information about 
the sex or age of any individual. 
‘‘(D) APPLICATION TO FAMILY MEMBERS 
COVERED UNDER SAME PLAN.—Information de-
scribed in clause (iii) of subparagraph (A) shall 
not be treated as genetic information to the ex-
tent that such information is taken into account 
only with respect to the individual in which 
such disease or disorder is manifested and not 
as genetic information with respect to any other 
individual. 
‘‘(7) GENETIC TEST.— 
‘‘(A) IN
GENERAL.—The term ‘genetic 
test’ means an analysis of human DNA, RNA, 
chromosomes, proteins, or metabolites, that de-
tects genotypes, mutations, or chromosomal 
changes. 
‘‘(B) EXCEPTIONS.—The term ‘genetic 
test’ does not mean— 
‘‘(i) an analysis of proteins or metabo-
lites that does not detect genotypes, 
mutations, or chromosomal changes; or 
‘‘(ii) an analysis of proteins or me-
tabolites that is directly related to a mani-
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fested disease, disorder, or pathological 
condition that could reasonably be detected 
by a health care professional with appro-
priate training and expertise in the field of 
medicine involved. 
‘‘(8) GENETIC
SERVICES.—The term ‘genetic 
services’ means— 
‘‘(A) a genetic test; 
‘‘(B) genetic counseling (including obtain-
ing, interpreting, or assessing genetic informa-
tion); or 
‘‘(C) genetic education. 
‘‘(9) UNDERWRITING
PURPOSES.—The term 
‘underwriting purposes’ means, with respect to any 
group health plan, or health insurance coverage of-
fered in connection with a group health plan— 
‘‘(A) rules for, or determination of, eligi-
bility (including enrollment and continued eligi-
bility) for benefits under the plan or coverage; 
‘‘(B) the computation of premium or con-
tribution amounts under the plan or coverage; 
‘‘(C) the application of any pre-existing 
condition exclusion under the plan or coverage; 
and 
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‘‘(D) other activities related to the cre-
ation, renewal, or replacement of a contract of 
health insurance or health benefits.’’. 
(e) ERISA ENFORCEMENT.—Section 502 of the Em-
ployee Retirement Income Security Act of 1974 (29 
U.S.C. 1132) is amended— 
(1) in subsection (a)(6), by striking ‘‘(7), or 
(8)’’ and inserting ‘‘(7), (8), or (9)’’; and 
(2) in subsection (c), by redesignating para-
graph (9) as paragraph (10), and by inserting after 
paragraph (8) the following new paragraph: 
‘‘(9) SECRETARIAL ENFORCEMENT AUTHORITY 
RELATING TO USE OF GENETIC INFORMATION.— 
‘‘(A) GENERAL RULE.—The Secretary may 
impose a penalty against any plan sponsor of a 
group health plan, or any health insurance 
issuer offering health insurance coverage in 
connection with the plan, for any failure by 
such sponsor or issuer to meet the requirements 
of subsection (a)(1)(F), (b)(3), (c), or (d) of 
section 702 or section 701 or 702(b)(1) with re-
spect to genetic information, in connection with 
the plan. 
‘‘(B) AMOUNT.— 
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‘‘(i) IN
GENERAL.—The amount of 
the penalty imposed by subparagraph (A) 
shall be $100 for each day in the non-
compliance period with respect to each par-
ticipant or beneficiary to whom such fail-
ure relates. 
‘‘(ii) NONCOMPLIANCE PERIOD.—For 
purposes of this paragraph, the term ‘non-
compliance period’ means, with respect to 
any failure, the period— 
‘‘(I) beginning on the date such 
failure first occurs; and 
‘‘(II) ending on the date the fail-
ure is corrected. 
‘‘(C) MINIMUM PENALTIES WHERE FAIL-
URE DISCOVERED.—Notwithstanding clauses (i) 
and (ii) of subparagraph (D): 
‘‘(i) IN GENERAL.—In the case of 1 or 
more failures with respect to a participant 
or beneficiary— 
‘‘(I) which are not corrected be-
fore the date on which the plan re-
ceives a notice from the Secretary of 
such violation; and 
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‘‘(II) which occurred or continued 
during the period involved; 
the amount of penalty imposed by subpara-
graph (A) by reason of such failures with 
respect to such participant or beneficiary 
shall not be less than $2,500. 
‘‘(ii) 
HIGHER
MINIMUM
PENALTY 
WHERE VIOLATIONS ARE MORE THAN DE 
MINIMIS.—To the extent violations for 
which any person is liable under this para-
graph for any year are more than de mini-
mis, clause (i) shall be applied by sub-
stituting ‘$15,000’ for ‘$2,500’ with re-
spect to such person. 
‘‘(D) LIMITATIONS.— 
‘‘(i) PENALTY NOT TO APPLY WHERE 
FAILURE
NOT
DISCOVERED
EXERCISING 
REASONABLE
DILIGENCE.—No 
penalty 
shall be imposed by subparagraph (A) on 
any failure during any period for which it 
is established to the satisfaction of the 
Secretary that the person otherwise liable 
for such penalty did not know, and exer-
cising reasonable diligence would not have 
known, that such failure existed. 
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‘‘(ii) PENALTY
NOT
TO
APPLY
TO 
FAILURES
CORRECTED
WITHIN
CERTAIN 
PERIODS.—No penalty shall be imposed by 
subparagraph (A) on any failure if— 
‘‘(I) such failure was due to rea-
sonable cause and not to willful ne-
glect; and 
‘‘(II) such failure is corrected 
during the 30-day period beginning on 
the first date the person otherwise lia-
ble for such penalty knew, or exer-
cising reasonable diligence would have 
known, that such failure existed. 
‘‘(iii) OVERALL LIMITATION FOR UN-
INTENTIONAL FAILURES.—In the case of 
failures which are due to reasonable cause 
and not to willful neglect, the penalty im-
posed by subparagraph (A) for failures 
shall not exceed the amount equal to the 
lesser of— 
‘‘(I) 10 percent of the aggregate 
amount paid or incurred by the plan 
sponsor (or predecessor plan sponsor) 
during the preceding taxable year for 
group health plans; or 
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‘‘(II) $500,000. 
‘‘(E) WAIVER BY SECRETARY.—In the case 
of a failure which is due to reasonable cause 
and not to willful neglect, the Secretary may 
waive part or all of the penalty imposed by sub-
paragraph (A) to the extent that the payment 
of such penalty would be excessive relative to 
the failure involved. 
‘‘(F) DEFINITIONS.—Terms used in this 
paragraph which are defined in section 733 
shall have the meanings provided such terms in 
such section.’’. 
(f) REGULATIONS AND EFFECTIVE DATE.— 
(1) REGULATIONS.—The Secretary of Labor 
shall issue final regulations not later than 1 year 
after the date of enactment of this Act to carry out 
the amendments made by this section. 
(2) EFFECTIVE DATE.—The amendments made 
by this section shall apply with respect to group 
health plans for plan years beginning after the date 
that is 18 months after the date of enactment of 
this Act. 
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tion concerning an individual or family member of an indi-
vidual shall— 
‘‘(1) with respect to such an individual or fam-
ily member of an individual who is a pregnant 
woman, include genetic information of any fetus car-
ried by such pregnant woman; and 
‘‘(2) with respect to an individual or family 
member utilizing an assisted reproductive tech-
nology, include genetic information of any embryo le-
gally held by the individual or family member.’’. 
(d) DEFINITIONS.—Subsection (d) of section 9832 of 
such Code is amended by adding at the end the following: 
‘‘(6) FAMILY
MEMBER.—The term ‘family 
member’ means, with respect to any individual— 
‘‘(A) a dependent (as such term is used for 
purposes of section 9801(f)(2)) of such indi-
vidual, and 
‘‘(B) any other individual who is a first-de-
gree, second-degree, third-degree, or fourth-de-
gree relative of such individual or of an indi-
vidual described in subparagraph (A). 
‘‘(7) GENETIC INFORMATION.— 
‘‘(A) IN GENERAL.—The term ‘genetic in-
formation’ means, with respect to any indi-
vidual, information about— 
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‘‘(i) such individual’s genetic tests, 
‘‘(ii) the genetic tests of family mem-
bers of such individual, and 
‘‘(iii) subject to subparagraph (D), 
the manifestation of a disease or disorder 
in family members of such individual. 
‘‘(B) INCLUSION OF GENETIC SERVICES.— 
Such term includes, with respect to any indi-
vidual, any request for, or receipt of, genetic 
services (including genetic services received pur-
suant to participation in clinical research) by 
such individual or any family member of such 
individual. 
‘‘(C) EXCLUSIONS.—The term ‘genetic in-
formation’ shall not include information about 
the sex or age of any individual. 
‘‘(D) APPLICATION TO FAMILY MEMBERS 
COVERED UNDER SAME PLAN.—Information de-
scribed in clause (iii) of subparagraph (A) shall 
not be treated as genetic information to the ex-
tent that such information is taken into account 
only with respect to the individual in which 
such disease or disorder is manifested and not 
as genetic information with respect to any other 
individual. 
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