I
107TH CONGRESS
1ST SESSION
H. R. 602
To prohibit discrimination on the basis of genetic information with respect
to health insurance.
IN THE HOUSE OF REPRESENTATIVES
FEBRUARY 13, 2001
Ms. SLAUGHTER (for herself, Mrs. MORELLA, Mr. ABERCROMBIE, Mr. ACKER-
MAN, Mr. ALLEN, Mr. BALDACCI, Ms. BALDWIN, Mr. BENTSEN, Ms.
BERKLEY, Mr. BERMAN, Mr. BLAGOJEVICH, Mr. BLUMENAUER, Mr.
BONIOR, Mr. BORKSI, Mr. BOUCHER, Mr. BOYD, Mr. BRADY of Pennsyl-
vania, Mr. BURTON
of Indiana, Mr. CALVERT, Mrs. CAPPS, Mr.
CAPUANO, Mr. CARDIN, Ms. CARSON of Indiana, Mrs. CHRISTENSEN, Mr.
COSTELLO, Mr. COYNE, Mr. CRAMER, Mr. DAVIS of Illinois, Mr.
DEFAZIO, Ms. DEGETTE, Mr. DELAHUNT, Ms. DELAURO, Mr. DICKS,
Mr. DOYLE, Mr. DUNCAN, Mr. EDWARDS, Ms. ESHOO, Mr. ETHERIDGE,
Mr. EVANS, Mr. FARR of California, Mr. FATTAH, Mr. FILNER, Mr.
FORD, Mr. FRANK, Mr. FRELINGHUYSEN, Mr. FROST, Mr. GALLEGLY,
Mr. GEPHARDT, Mr. GILCHREST, Mr. GILMAN, Mr. GREEN of Texas, Mr.
HALL of Ohio, Mr. HILLIARD, Mr. HINCHEY, Mr. HOEFFEL, Mr.
HOLDEN, Mr. HOLT, Ms. HOOLEY of Oregon, Mr. HORN, Mr. INSLEE,
Mr. JEFFERSON, Mrs. JONES of Ohio, Mr. KANJORSKI, Ms. KAPTUR,
Mrs. KELLY, Mr. KILDEE, Ms. KILPATRICK, Mr. KING, Mr. KLECZKA,
Mr. KOLBE, Mr. KUCINICH, Mr. LAMPSON, Mr. LANTOS, Mr. LARSON of
Connecticut, Ms. LEE, Mr. LEVIN, Ms. LOFGREN, Mrs. LOWEY, Mr. LU-
THER, Mrs. MCCARTHY of New York, Ms. MCCARTHY of Missouri, Ms.
MCCOLLUM, Mr. MCDERMOTT, Mr. MCGOVERN, Mr. MCHUGH, Mr.
MCNULTY, Mrs. MALONEY of New York, Mr. MALONEY of Connecticut,
Mr. MARKEY, Mr. MASCARA, Mr. MATSUI, Mr. MEEHAN, Mrs. MEEK of
Florida, Mr. MEEKS of New York, Mr. MENENDEZ, Ms. MILLENDER-
MCDONALD, Mr. GEORGE MILLER of California, Mrs. MINK of Hawaii,
Mr. MOAKLEY, Mr. MOORE, Mr. MORAN of Virginia, Mr. MURTHA, Mr.
NADLER, Mrs. NAPOLITANO, Mr. NEY, Ms. NORTON, Mr. OBERSTAR,
Mr. OBEY, Mr. OLVER, Mr. PALLONE, Mr. PASCRELL, Mr. PAYNE, Ms.
PELOSI, Mr. PHELPS, Mr. PRICE of North Carolina, Mr. RANGEL, Mr.
REYES, Ms. RIVERS, Ms. ROS-LEHTINEN, Mrs. ROUKEMA, Ms. ROYBAL-
ALLARD, Mr. RUSH, Mr. SANDERS, Mr. SANDLIN, Ms. SCHAKOWSKY, Mr.
SCOTT, Mr. SERRANO, Mr. SHERMAN, Mr. SISISKY, Mr. SKELTON, Mr.
SMITH of Washington, Mr. SNYDER, Mr. SPRATT, Mr. STARK, Mr. STEN-
HOLM, Mr. STRICKLAND, Mr. STUPAK, Mrs. TAUSCHER, Mr. THOMPSON
of Mississippi, Mrs. THURMAN, Mr. TIERNEY, Mr. TRAFICANT, Mr.
UDALL of Colorado, Mr. UDALL of New Mexico, Mr. VISCLOSKY, Mr.
WALSH, Ms. WATERS, Mr. WAXMAN, Mr. WEINER, Mr. WEXLER, Mr.
WOLF, and Ms. WOOLSEY) introduced the following bill, which was re-
ferred to the Committee on Energy and Commerce, and in addition to
the Committees on Ways and Means, and Education and the Workforce,
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.
Be it enacted by the Senate and House of Representa-
tives of the United States of America in Congress assembled,
SECTION 1. SHORT TITLE.
This Act may be cited as the ‘‘Genetic Non-
discrimination in Health Insurance and Employment
Act’’.
TITLE 
I—PROHIBITION 
OF
HEALTH 
INSURANCE 
DIS-
CRIMINATION ON THE BASIS
OF PROTECTED GENETIC IN-
FORMATION
SEC. 101. AMENDMENTS TO EMPLOYEE RETIREMENT IN-
COME SECURITY ACT OF 1974.
(a) PROHIBITION OF HEALTH INSURANCE DISCRIMI-
NATION ON THE BASIS OF GENETIC SERVICES OR PRO-
TECTED GENETIC INFORMATION.—
(1) NO
ENROLLMENT
RESTRICTION
FOR
GE-
NETIC SERVICES.—Section 702(a)(1)(F) of the Em-
ployee Retirement Income Security Act of 1974 (29
U.S.C. 1182(a)(1)(F)) is amended by inserting be-
fore the period ‘‘(or information about a request for
or the receipt of genetic services by such individual
or family member of such individual)’’.
(2) NO DISCRIMINATION IN GROUP RATE BASED
ON PROTECTED GENETIC INFORMATION.—
(A) IN GENERAL.—Subpart B of part 7 of
subtitle B of title I of the Employee Retirement
Income Security Act of 1974 (29 U.S.C. 1185
et seq.) is amended by adding at the end the
following:
‘‘SEC. 
714. 
PROHIBITING 
DISCRIMINATION 
AGAINST
GROUPS ON THE BASIS OF PROTECTED GE-
NETIC INFORMATION.
‘‘A group health plan, and a health insurance issuer
offering group health insurance coverage in connection
with a group health plan, shall not deny eligibility to a
group or adjust premium or contribution rates for a group
on the basis of protected genetic information concerning
an individual in the group (or information about a request
for or the receipt of genetic services by such individual
or family member of such individual).’’.
(B) CONFORMING AMENDMENTS.—
(i) Section 702(b)(2)(A) of the Em-
ployee Retirement Income Security Act of
1974 (29 U.S.C. 1182(b)) is amended to
read as follows:
‘‘(A) to restrict the amount that an em-
ployer may be charged for coverage under a
group health plan, except as provided in section
714; or’’.
(ii) Section 732(a) of the Employee
Retirement Income Security Act of 1974
(29 U.S.C. 1191a(a)) is amended by strik-
ing ‘‘section 711’’ and inserting ‘‘sub-
sections (a)(1)(F), (b) (with respect to
cases relating to genetic information or in-
formation about a request or receipt of ge-
netic services by an individual or family
member of such individual), (c), (d), (e),
(f), or (g) of section 702, section 711 and
section 714’’.
(b) LIMITATIONS
ON GENETIC TESTING
AND
ON
COLLECTION AND DISCLOSURE OF PROTECTED GENETIC
INFORMATION.—Section 702 of the Employee 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, or 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.—Nothing in
this part shall be construed to limit the authority of
a health care professional, who is providing treat-
ment with respect to an individual and who is em-
ployed by a group health plan or a health insurance
issuer, to request that such individual or family
member of such individual undergo a genetic test.
Such a health care professional shall not require
that such individual or family member undergo a ge-
netic test.
‘‘(d) COLLECTION OF PROTECTED GENETIC INFOR-
MATION.—Except as provided in subsections (f) and (g),
a group health plan, or a health insurance issuer offering
health insurance coverage in connection with a group
health plan, shall not request, require, collect, or purchase
protected genetic information concerning an individual (or
information about a request for or the receipt of genetic
services by such individual or family member of such indi-
vidual).
‘‘(e) DISCLOSURE OF PROTECTED GENETIC INFOR-
MATION.—A group health plan, or a health insurance
issuer offering health insurance coverage in connection
with a group health plan, shall not disclose protected ge-
netic information about an individual (or information
about a request for or the receipt of genetic services by
such individual or family member of such individual) to—
‘‘(1) any entity that is a member of the same
controlled group as such issuer or plan sponsor of
such group health plan;
‘‘(2) any other group health plan or health in-
surance issuer or any insurance agent, third party
administrator, or other person subject to regulation
under State insurance laws;
‘‘(3) the Medical Information Bureau or any
other person that collects, compiles, publishes, or
otherwise disseminates insurance information;
‘‘(4) the individual’s employer or any plan spon-
sor; or
‘‘(5) any other person the Secretary may speci-
fy in regulations.
‘‘(f) INFORMATION
FOR PAYMENT
FOR GENETIC
SERVICES.—
‘‘(1) IN GENERAL.—With respect to payment
for genetic services conducted concerning an indi-
vidual or the coordination of benefits, a group health
plan, or a health insurance issuer offering group
health insurance coverage in connection with a group
health plan, may request that the individual provide
the plan or issuer with evidence that such services
were performed.
‘‘(2) RULE
OF
CONSTRUCTION.—Nothing in
paragraph (1) shall be construed to—
‘‘(A) permit a group health plan or health
insurance issuer to request (or require) the re-
sults of the services referred to in such para-
graph; or
‘‘(B) require that a group health plan or
health insurance issuer make payment for serv-
ices described in such paragraph where the in-
dividual involved has refused to provide evi-
dence of the performance of such services pur-
suant to a request by the plan or issuer in ac-
cordance with such paragraph.
‘‘(g) INFORMATION
FOR
PAYMENT
OF
OTHER
CLAIMS.—With respect to the payment of claims for bene-
fits other than genetic services, a group health plan, or
a health insurance issuer offering group health insurance
coverage in connection with a group health plan, may re-
quest that an individual provide protected genetic informa-
tion so long as such information—
‘‘(1) is used solely for the payment of a claim;
‘‘(2) is limited to information that is directly re-
lated to and necessary for the payment of such claim
and the claim would otherwise be denied but for the
protected genetic information; and
‘‘(3) is used only by an individual (or individ-
uals) within such plan or issuer who needs access to
such information for purposes of payment of a
claim.
‘‘(h) RULES OF CONSTRUCTION.—
‘‘(1) COLLECTION OR DISCLOSURE AUTHORIZED
BY INDIVIDUAL.—The provisions of subsections (d)
(regarding collection) and (e) shall not apply to an
individual if the individual (or legal representative of
the individual) provides prior, knowing, voluntary,
and written authorization for the collection or disclo-
sure of protected genetic information.
‘‘(2) DISCLOSURE FOR HEALTH CARE TREAT-
MENT.—Nothing in this section shall be construed to
limit or restrict the disclosure of protected genetic
information from a health care provider to another
health care provider for the purpose of providing
health care treatment to the individual involved.
‘‘(i) DEFINITIONS.—In this section:
‘‘(1) CONTROLLED
GROUP.—The term ‘con-
trolled group’ means any group treated as a single
employer under subsection (b), (c), (m), or (o) of
section 414 of the Internal Revenue Code of 1986.
‘‘(2) GROUP
HEALTH
PLAN, HEALTH
INSUR-
ANCE ISSUER.—The terms ‘group health plan’ and
‘health insurance issuer’ include a third party ad-
ministrator or other person acting for or on behalf
of such plan or issuer.’’.
(c) ENFORCEMENT.—Section 502 (29 U.S.C. 1132)
is amended by adding at the end the following:
‘‘(n) VIOLATION OF GENETIC DISCRIMINATION OR
GENETIC DISCLOSURE PROVISIONS.—In any action under
this section against any administrator of a group health
plan, or health insurance issuer offering group health in-
surance coverage in connection with a group health plan
(including any third party administrator or other person
acting for or on behalf of such plan or issuer) alleging
a violation of subsection (a)(1)(F), (b) (with respect to
cases relating to genetic information or information about
a request or receipt of genetic services by an individual
or family member of such individual), (c), (d), (e), (f), or
(g) of section 702, or section 714, the court may award
any appropriate legal or equitable relief. Such relief may
include a requirement for the payment of attorney’s fees
and costs, including the costs of expert witnesses.
‘‘(o) CIVIL PENALTY.—The monetary provisions of
section 308(b)(2)(C) of Public Law 101–336 (42 U.S.C.
12188(b)(2)(C)) shall apply for purposes of the Secretary
enforcing the provisions referred to in subsection (n), ex-
cept that any such relief awarded shall be paid only into
the general fund of the Treasury.’’.
(d) PREEMPTION.—Section 731 of the Employee Re-
tirement Income Security Act of 1974 (29 U.S.C. 1191)
is amended—
(1) in subsection (a)(1), by inserting ‘‘or (e)’’
after ‘‘subsection (b)’’; and
(2) by adding at the end the following:
‘‘(e) SPECIAL RULE IN CASE OF GENETIC INFORMA-
TION.—With respect to group health insurance coverage
offered by a health insurance issuer, the provisions of this
part relating to genetic information (including information
about a request for or the receipt of genetic services by
an individual or a family member of such individual) shall
not be construed to supersede any provision of State law
which establishes, implements, or continues in effect a
standard, requirement, or remedy that more completely—
gene products, or inherited characteristics that may
derive from an individual or a family member of
such individual (including information about a re-
quest for or the receipt of genetic services by such
individual or family member of such individual).
‘‘(7) GENETIC
SERVICES.—The term ‘genetic
services’ means health services, including genetic
tests, provided to obtain, assess, or interpret genetic
information for diagnostic and therapeutic purposes,
and for genetic education and counseling.
‘‘(8) GENETIC TEST.—The term ‘genetic test’
means the analysis of human DNA, RNA, chro-
mosomes, proteins, and metabolites that detect
genotypes, mutations, or chromosomal changes.
‘‘(9) PROTECTED GENETIC INFORMATION.—
‘‘(A) IN GENERAL.—The term ‘protected
genetic information’ means—
‘‘(i) information about an individual’s
genetic tests;
‘‘(ii) information about genetic tests
of family members of the individual; or
‘‘(iii) information about the occur-
rence of a disease or disorder in family
members.
‘‘(B) LIMITATIONS.—The term ‘protected
genetic information’ shall not include—
‘‘(i) information about the sex or age
of the individual;
‘‘(ii) 
information 
about 
chemical,
blood, or urine analyses of the individual,
unless these analyses are genetic tests; or
‘‘(iii) 
information 
about 
physical
exams of the individual, and other informa-
tion that indicates the current health sta-
tus of the individual.’’.
(f) AMENDMENT CONCERNING SUPPLEMENTAL EX-
CEPTED BENEFITS.—Section 732(c)(3) of the Employee
Retirement Income Security Act of 1974 (29 U.S.C.
1191a(c)(3)) is amended by inserting ‘‘, other than the
requirements of subsections (a)(1)(F), (b) (in cases relat-
ing to genetic information or information about a request
for or the receipt of genetic services by an individual or
a family member of such individual), (c), (d), (e), (f) and
(g) of section 702 and section 714,’’ after ‘‘The require-
ments of this part’’.
(g) EFFECTIVE DATE.—
(1) IN GENERAL.—Except as provided in this
section, this section and the amendments made by
this section shall apply with respect to group health
plans for plan years beginning after October 1,
2002.
(2) SPECIAL
RULE
FOR
COLLECTIVE
BAR-
GAINING
AGREEMENTS.—In the case of a group
health plan maintained pursuant to one or more col-
lective bargaining agreements between employee rep-
resentatives and one or more employers ratified be-
fore the date of the enactment of this Act, this sec-
tion and the amendments made by this section shall
not apply to plan years beginning before the later
of—
(A) the date on which the last of the col-
lective bargaining agreements relating to the
plan terminates (determined without regard to
any extension thereof agreed to after the date
of the enactment of this Act), or
(B) October 1, 2002.
For purposes of subparagraph (A), any plan amend-
ment made pursuant to a collective bargaining
agreement relating to the plan which amends the
plan solely to conform to any requirement of the
amendments made by this section shall not be treat-
ed as a termination of such collective bargaining
agreement.
SEC. 102. AMENDMENTS TO THE PUBLIC HEALTH SERVICE
ACT.
(a) AMENDMENTS RELATING TO THE GROUP MAR-
KET.—
(1) PROHIBITION OF HEALTH INSURANCE DIS-
CRIMINATION
ON
THE
BASIS
OF
PROTECTED
GE-
NETIC INFORMATION OR GENETIC SERVICES.—
(A) NO
ENROLLMENT
RESTRICTION
FOR
GENETIC SERVICES.—Section 2702(a)(1)(F) of
the Public Health Service Act (42 U.S.C.
300gg–1(a)(1)(F)) is amended by inserting be-
fore the period the following: ‘‘(or information
about a request for or the receipt of genetic
services by an individual or a family member of
such individual)’’.
(B) NO DISCRIMINATION IN GROUP RATE
BASED
ON
PROTECTED
GENETIC
INFORMA-
TION.—
(i) IN GENERAL.—Subpart 2 of part
A of title XXVII of the Public Health
Service (42 U.S.C. 300gg-4 et seq.) is
amended by adding at the end the fol-
lowing:
‘‘SEC. 
2707. 
PROHIBITING 
DISCRIMINATION 
AGAINST
GROUPS ON THE BASIS OF PROTECTED GE-
NETIC INFORMATION.
‘‘A group health plan, and a health insurance issuer
offering group health insurance coverage in connection
with a group health plan, shall not deny eligibility to a
group or adjust premium or contribution rates for a group
on the basis of protected genetic information concerning
an individual in the group (or information about a request
for or the receipt of genetic services by such individual
or family member of such individual).’’.
(ii) CONFORMING AMENDMENTS.—
(I) Section 2702(b)(2)(A) of the
Public Health Service Act (42 U.S.C.
300gg–1(b)(2)(A)) is amended to read
as follows:
‘‘(A) to restrict the amount that an em-
ployer may be charged for coverage under a
group health plan, except as provided in section
2707; or’’.
(II) Section 2721(a) of the Pub-
lic Health Service Act (42 U.S.C.
300gg–21(a)) is amended by inserting
‘‘(other than subsections (a)(1)(F),
(b) (with respect to cases relating to
genetic information or information
about a request or receipt of genetic
services by an individual or family
member of such individual), (c), (d),
(e), (f), or (g) of section 2702 and
section 2707)’’ after ‘‘subparts 1 and
3’’.
(2) LIMITATIONS ON GENETIC TESTING AND ON
COLLECTION AND DISCLOSURE OF PROTECTED GE-
NETIC INFORMATION.—Section 2702 of the Public
Health Service Act (42 U.S.C. 300gg–1) 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, or 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.—Nothing in
this title shall be construed to limit the authority of
a health care professional, who is providing treat-
ment with respect to an individual and who is em-
ployed by a group health plan or a health insurance
issuer, to request that such individual or family
member of such individual undergo a genetic test.
Such a health care professional shall not require
that such individual or family member undergo a ge-
netic test.
‘‘(d) COLLECTION OF PROTECTED GENETIC INFOR-
MATION.—Except as provided in subsections (f) and (g),
a group health plan, or a health insurance issuer offering
health insurance coverage in connection with a group
health plan, shall not request, require, collect, or purchase
protected genetic information concerning an individual (or
information about a request for or the receipt of genetic
services by such individual or family member of such indi-
vidual).
‘‘(e) DISCLOSURE OF PROTECTED GENETIC INFOR-
MATION.—A group health plan, or a health insurance
issuer offering health insurance coverage in connection
with a group health plan, shall not disclose protected ge-
netic information about an individual (or information
about a request for or the receipt of genetic services by
such individual or family member of such individual) to—
‘‘(1) any entity that is a member of the same
controlled group as such issuer or plan sponsor of
such group health plan;
‘‘(2) any other group health plan or health in-
surance issuer or any insurance agent, third party
administrator, or other person subject to regulation
under State insurance laws;
‘‘(3) the Medical Information Bureau or any
other person that collects, compiles, publishes, or
otherwise disseminates insurance information;
‘‘(4) the individual’s employer or any plan spon-
sor; or
‘‘(5) any other person the Secretary may speci-
fy in regulations.
‘‘(f) INFORMATION
FOR PAYMENT
FOR GENETIC
SERVICES.—
‘‘(1) IN GENERAL.—With respect to payment
for genetic services conducted concerning an indi-
vidual or the coordination of benefits, a group health
plan, or a health insurance issuer offering group
health insurance coverage in connection with a group
health plan, may request that the individual provide
the plan or issuer with evidence that such services
were performed.
‘‘(2) RULE
OF
CONSTRUCTION.—Nothing in
paragraph (1) shall be construed to—
‘‘(A) permit a group health plan or health
insurance issuer to request (or require) the re-
sults of the services referred to in such para-
graph; or
‘‘(B) require that a group health plan or
health insurance issuer make payment for serv-
ices described in such paragraph where the in-
dividual involved has refused to provide evi-
dence of the performance of such services pur-
suant to a request by the plan or issuer in ac-
cordance with such paragraph.
‘‘(g) INFORMATION
FOR
PAYMENT
OF
OTHER
CLAIMS.—With respect to the payment of claims for bene-
fits other than genetic services, a group health plan, or
a health insurance issuer offering group health insurance
coverage in connection with a group health plan, may re-
quest that an individual provide protected genetic informa-
tion so long as such information—
‘‘(1) is used solely for the payment of a claim;
‘‘(2) is limited to information that is directly re-
lated to and necessary for the payment of such claim
and the claim would otherwise be denied but for the
protected genetic information; and
‘‘(3) is used only by an individual (or individ-
uals) within such plan or issuer who needs access to
such information for purposes of payment of a
claim.
‘‘(h) RULES OF CONSTRUCTION.—
‘‘(1) COLLECTION OR DISCLOSURE AUTHORIZED
BY INDIVIDUAL.—The provisions of subsections (d)
(regarding collection) and (e) shall not apply to an
individual if the individual (or legal representative of
the individual) provides prior, knowing, voluntary,
and written authorization for the collection or disclo-
sure of protected genetic information.
‘‘(2) DISCLOSURE FOR HEALTH CARE TREAT-
MENT.—Nothing in this section shall be construed to
limit or restrict the disclosure of protected genetic
information from a health care provider to another
health care provider for the purpose of providing
health care treatment to the individual involved.
‘‘(i) DEFINITIONS.—In this section:
‘‘(1) CONTROLLED
GROUP.—The term ‘con-
trolled group’ means any group treated as a single
employer under subsection (b), (c), (m), or (o) of
section 414 of the Internal Revenue Code of 1986.
‘‘(2) GROUP
HEALTH
PLAN, HEALTH
INSUR-
ANCE ISSUER.—The terms ‘group health plan’ and
‘health insurance issuer’ include a third party ad-
ministrator or other person acting for or on behalf
of such plan or issuer.’’.
(3) DEFINITIONS.—Section 2791(d) of the Pub-
lic Health Service Act (42 U.S.C. 300gg–91(d)) is
amended by adding at the end the following new
paragraphs:
‘‘(15) FAMILY
MEMBER.—The term ‘family
member’ means with respect to an individual—
‘‘(A) the spouse of the individual;
‘‘(B) a dependent child of the individual,
including a child who is born to or placed for
adoption with the individual; and
‘‘(C) all other individuals related by blood
to the individual or the spouse or child de-
scribed in subparagraph (A) or (B).
‘‘(16) GENETIC INFORMATION.—The term ‘ge-
netic information’ means information about genes,
gene products, or inherited characteristics that may
derive from an individual or a family member of
such individual (including information about a re-
quest for or the receipt of genetic services by such
individual or family member of such individual).
‘‘(17) GENETIC SERVICES.—The term ‘genetic
services’ means health services, including genetic
tests, provided to obtain, assess, or interpret genetic
information for diagnostic and therapeutic purposes,
and for genetic education and counselling.
‘‘(18) GENETIC TEST.—The term ‘genetic test’
means the analysis of human DNA, RNA, chro-
mosomes, proteins, and metabolites that detect
genotypes, mutations, or chromosomal changes.
‘‘(19) PROTECTED GENETIC INFORMATION.—
‘‘(A) IN GENERAL.—The term ‘protected
genetic information’ means—
‘‘(i) information about an individual’s
genetic tests;
‘‘(ii) information about genetic tests
of family members of the individual; or
‘‘(iii) information about the occur-
rence of a disease or disorder in family
members.
‘‘(B) LIMITATIONS.—The term ‘protected
genetic information’ shall not include—
‘‘(i) information about the sex or age
of the individual;
‘‘(ii) 
information 
about 
chemical,
blood, or urine analyses of the individual,
unless these analyses are genetic tests; or
‘‘(iii) 
information 
about 
physical
exams of the individual, and other informa-
tion that indicates the current health sta-
tus of the individual.’’.
(b) AMENDMENT RELATING
TO
THE INDIVIDUAL
MARKET.—The first subpart 3 of part B of title XXVII
of the Public Health Service Act (42 U.S.C. 300gg–51 et
seq.) is amended—
(1) by redesignating such subpart as subpart 2;
and
(2) by adding at the end the following:
‘‘SEC. 2753. PROHIBITION OF HEALTH INSURANCE DIS-
CRIMINATION AGAINST INDIVIDUALS ON THE
BASIS OF PROTECTED GENETIC INFORMA-
TION.
‘‘(a) INELIGIBILITY TO ENROLL.—A health insur-
ance issuer offering health insurance coverage in the indi-
vidual market shall not establish rules for eligibility to en-
roll in individual health insurance coverage that are based
on protected genetic information concerning the individual
(or information about a request for or the receipt of ge-
netic services by such individual or family member of such
individual).
‘‘(b) IN PREMIUM RATES.—A health insurance issuer
offering health insurance coverage in the individual mar-
ket shall not adjust premium rates on the basis of pro-
tected genetic information concerning an individual (or in-
formation about a request for or the receipt of genetic
services by such individual or family member of such indi-
vidual).
‘‘SEC. 2754. LIMITATIONS ON GENETIC TESTING AND ON
COLLECTION 
AND 
DISCLOSURE 
OF 
PRO-
TECTED GENETIC INFORMATION.
‘‘(a) GENETIC TESTING.—
‘‘(1) LIMITATION ON REQUESTING OR REQUIR-
ING GENETIC TESTING.—A health insurance issuer
offering health insurance coverage in the individual
market shall not request or require an individual or
a family member of such individual to undergo a ge-
netic test.
‘‘(2) RULE
OF
CONSTRUCTION.—Nothing in
this title shall be construed to limit the authority of
a health care professional, who is providing treat-
ment with respect to an individual and who is em-
ployed by a group health plan or a health insurance
issuer, to request that such individual or family
member of such individual undergo a genetic test.
Such a health care professional shall not require
that such individual or family member undergo a ge-
netic test.
‘‘(b) COLLECTION OF PROTECTED GENETIC INFOR-
MATION.—Except as provided in subsections (d) and (e),
a health insurance issuer offering health insurance cov-
erage in the individual market shall not request, require,
collect, or purchase protected genetic information con-
cerning an individual (or information about a request for
or the receipt of genetic services by such individual or fam-
ily member of such individual).
‘‘(c) DISCLOSURE OF PROTECTED GENETIC INFOR-
MATION.—A health insurance issuer offering health insur-
ance coverage in the individual market shall not disclose
protected genetic information about an individual (or in-
formation about a request for or the receipt of genetic
services by such individual or family member of such indi-
vidual) to—
‘‘(1) any entity that is a member of the same
controlled group as such issuer or plan sponsor of
such group health plan;
‘‘(2) any other group health plan or health in-
surance issuer or any insurance agent, third party
administrator, or other person subject to regulation
under State insurance laws;
‘‘(3) the Medical Information Bureau or any
other person that collects, compiles, publishes, or
otherwise disseminates insurance information;
‘‘(4) the individual’s employer or any plan spon-
sor; or
‘‘(5) any other person the Secretary may speci-
fy in regulations.
‘‘(d) INFORMATION
FOR PAYMENT
FOR GENETIC
SERVICES.—
‘‘(1) IN GENERAL.—With respect to payment
for genetic services conducted concerning an indi-
vidual or the coordination of benefits, a health insur-
ance issuer offering health insurance coverage in the
individual market may request that the individual
provide the plan or issuer with evidence that such
services were performed.
‘‘(2) RULE
OF
CONSTRUCTION.—Nothing in
paragraph (1) shall be construed to—
‘‘(A) permit a health insurance issuer to
request (or require) the results of the services
referred to in such paragraph; or
‘‘(B) require that a health insurance issuer
make payment for services described in such
paragraph where the individual involved has re-
fused to provide evidence of the performance of
such services pursuant to a request by the plan
or issuer in accordance with such paragraph.
‘‘(e) INFORMATION
FOR
PAYMENT
OF
OTHER
CLAIMS.—With respect to the payment of claims for bene-
fits other than genetic services, a health insurance issuer
offering health insurance coverage in the individual mar-
ket may request that an individual provide protected ge-
netic information so long as such information—
‘‘(1) is used solely for the payment of a claim;
‘‘(2) is limited to information that is directly re-
lated to and necessary for the payment of such claim
and the claim would otherwise be denied but for the
protected genetic information; and
‘‘(3) is used only by an individual (or individ-
uals) within such plan or issuer who needs access to
such information for purposes of payment of a
claim.
‘‘(f) RULES OF CONSTRUCTION.—
‘‘(1) COLLECTION OR DISCLOSURE AUTHORIZED
BY INDIVIDUAL.—The provisions of subsections (c)
(regarding collection) and (d) shall not apply to an
individual if the individual (or legal representative of
the individual) provides prior, knowing, voluntary,
and written authorization for the collection or disclo-
sure of protected genetic information.
‘‘(2) DISCLOSURE FOR HEALTH CARE TREAT-
MENT.—Nothing in this section shall be construed to
limit or restrict the disclosure of protected genetic
information from a health care provider to another
health care provider for the purpose of providing
health care treatment to the individual involved.
‘‘(g) DEFINITIONS.—In this section:
‘‘(1) CONTROLLED
GROUP.—The term ‘con-
trolled group’ means any group treated as a single
employer under subsection (b), (c), (m), or (o) of
section 414 of the Internal Revenue Code of 1986.
‘‘(2) GROUP
HEALTH
PLAN, HEALTH
INSUR-
ANCE ISSUER.—The terms ‘group health plan’ and
‘health insurance issuer’ include a third party ad-
ministrator or other person acting for or on behalf
of such plan or issuer.’’.
(c) ENFORCEMENT.—
(1) GROUP PLANS.—Section 2722 of the Public
Health Service Act (42 U.S.C. 300gg–22) is amend-
ed by adding at the end the following:
‘‘(c) VIOLATION OF GENETIC DISCRIMINATION OR
GENETIC DISCLOSURE PROVISIONS.—In any action under
this section against any administrator of a group health
plan, or health insurance issuer offering group health in-
surance coverage in connection with a group health plan
(including any third party administrator or other person
acting for or on behalf of such plan or issuer) alleging
a violation of subsections (a)(1)(F), (b) (with respect to
cases relating to genetic information or information about
a request or receipt of genetic services by an individual
or family member of such individual), (c), (d), (e), (f), or
(g) of section 2702 and section 2707 the court may award
any appropriate legal or equitable relief. Such relief may
include a requirement for the payment of attorney’s fees
and costs, including the costs of expert witnesses.
‘‘(d) CIVIL PENALTY.—The monetary provisions of
section 308(b)(2)(C) of Public Law 101–336 (42 U.S.C.
12188(b)(2)(C)) shall apply for purposes of the Secretary
enforcing the provisions referred to in subsection (c), ex-
cept that any such relief awarded shall be paid only into
the general fund of the Treasury.’’.
(2) INDIVIDUAL PLANS.—Section 2761 of the
Public Health Service Act (42 U.S.C. 300gg–45) is
amended by adding at the end the following:
‘‘(c) VIOLATION OF GENETIC DISCRIMINATION OR
GENETIC DISCLOSURE PROVISIONS.—In any action under
this section against any health insurance issuer offering
health insurance coverage in the individual market (in-
cluding any other person acting for or on behalf of such
issuer) alleging a violation of sections 2753 and 2754 the
court in which the action is commenced may award any
appropriate legal or equitable relief. Such relief may in-
clude a requirement for the payment of attorney’s fees and
costs, including the costs of expert witnesses.
‘‘(d) CIVIL PENALTY.—The monetary provisions of
section 308(b)(2)(C) of Public Law 101–336 (42 U.S.C.
12188(b)(2)(C)) shall apply for purposes of the Secretary
enforcing the provisions referred to in subsection (c), ex-
cept that any such relief awarded shall be paid only into
the general fund of the Treasury.’’.
(d) PREEMPTION.—
(1) GROUP MARKET.—Section 2723 of the Pub-
lic Health Service Act (42 U.S.C. 300gg–23) is
amended—
(A) in subsection (a)(1), by inserting ‘‘or
(e)’’ after ‘‘subsection (b)’’; and
(B) by adding at the end the following:
‘‘(e) SPECIAL RULE IN CASE OF GENETIC INFORMA-
TION.—With respect to group health insurance coverage
offered by a health insurance issuer, the provisions of this
part relating to genetic information (including information
about a request for or the receipt of genetic services by
an individual or a family member of such individual) shall
not be construed to supersede any provision of State law
which establishes, implements, or continues in effect a
standard, requirement, or remedy that more completely—
‘‘(1) protects the confidentiality of genetic in-
formation (including information about a request for
or the receipt of genetic services by an individual or
a family member of such individual) or the privacy
of an individual or a family member of the individual
with respect to genetic information (including infor-
mation about a request for or the receipt of genetic
services by an individual or a family member of such
individual) than does this part; or
‘‘(2) prohibits discrimination on the basis of ge-
netic information than does this part.’’.
(2) INDIVIDUAL MARKET.—Section 2762 of the
Public Health Service Act (42 U.S.C. 300gg–46) is
amended—
(A) in subsection (a), by inserting ‘‘and ex-
cept as provided in subsection (c),’’ after ‘‘Sub-
ject to subsection (b),’’; and
(B) by adding at the end the following:
‘‘(c) SPECIAL RULE IN CASE OF GENETIC INFORMA-
TION.—With respect to individual health insurance cov-
erage offered by a health insurance issuer, the provisions
of this part (or part C insofar as it applies to this part)
relating to genetic information (including information
about a request for or the receipt of genetic services by
an individual or a family member of such individual) shall
not be construed to supersede any provision of State law
(as defined in section 2723(d)) which establishes, imple-
ments, or continues in effect a standard, requirement, or
remedy that more completely—
‘‘(1) protects the confidentiality of genetic in-
formation (including information about a request for
or the receipt of genetic services of an individual or
a family member of such individual) or the privacy
of an individual or a family member of the individual
with respect to genetic information (including infor-
mation about a request for or the receipt of genetic
services by an individual or a family member of such
individual) than does this part (or part C insofar as
it applies to this part); or
‘‘(2) prohibits discrimination on the basis of ge-
netic information than does this part (or part C in-
sofar as it applies to this part).’’.
(e) ELIMINATION
OF OPTION
OF NON-FEDERAL
GOVERNMENTAL PLANS TO BE EXCEPTED FROM RE-
QUIREMENTS CONCERNING GENETIC INFORMATION.—
Section 2721(b)(2) of the Public Health Service Act (42
U.S.C. 300gg–21(b)(2)) is amended—
(1) in subparagraph (A), by striking ‘‘If the
plan sponsor’’ and inserting ‘‘Except as provided in
subparagraph (D), if the plan sponsor’’; and
(2) by adding at the end the following:
‘‘(D) ELECTION NOT APPLICABLE TO RE-
QUIREMENTS CONCERNING GENETIC INFORMA-
TION.—The election described in subparagraph
(A) shall not be available with respect to the
provisions of subsections (a)(1)(F), (c), (d), (e),
(f), and (g) of section 2702 and section 2707,
and the provisions of section 2702(b) to the ex-
tent that they apply to genetic information (or
information about a request for or the receipt
of genetic services by an individual or a family
member of such individual).’’.
(f) AMENDMENT CONCERNING SUPPLEMENTAL EX-
CEPTED BENEFITS.—
(1) GROUP
MARKET.—Section 2721(d)(3) of
the Public Health Service Act (42 U.S.C. 300gg–
23(d)(3)) is amended by inserting ‘‘, other than the
requirements of subsections (a)(1)(F), (b) (in cases
relating to genetic information or information about
a request for or the receipt of genetic services by an
individual or a family member of such individual)),
(c), (d), (e), (f) and (g) of section 2702 and section
2707,’’ after ‘‘The requirements of this part’’.
(2) INDIVIDUAL MARKET.—Section 2763(b) of
the Public Health Service Act (42 U.S.C. 300gg–
47(b)) is amended—
(A) by striking ‘‘The requirements of this
part’’ and inserting the following:
‘‘(1) IN GENERAL.—Except as provided in para-
graph (2), the requirements of this part’’; and
(B) by adding at the end the following:
‘‘(2) LIMITATION.—The requirements of sec-
tions 2753 and 2754 shall apply to excepted benefits
described in section 2791(c)(4).’’.
(g) EFFECTIVE DATE.—
(1) IN GENERAL.—The amendments made by
this section shall apply with respect to—
(A) group health plans, and health insur-
ance coverage offered in connection with group
health plans, for plan years beginning; and
(B) health insurance coverage offered,
sold, issued, renewed, in effect, or operated in
the individual market, after;
October 1, 2002.
(2) SPECIAL
RULE
FOR
COLLECTIVE
BAR-
GAINING
AGREEMENTS.—In the case of a group
health plan maintained pursuant to one or more col-
lective bargaining agreements between employee rep-
resentatives and one or more employers ratified be-
fore the date of the enactment of this Act, the
amendments made by this section shall not apply to
plan years beginning before the later of—
(A) the date on which the last of the col-
lective bargaining agreements relating to the
plan terminates (determined without regard to
any extension thereof agreed to after the date
of the enactment of this Act); or
(B) October 1, 2002.
For purposes of subparagraph (A), any plan amend-
ment made pursuant to a collective bargaining
agreement relating to the plan which amends the
plan solely to conform to any requirement of the
amendments made by this section shall not be treat-
ed as a termination of such collective bargaining
agreement.
SEC. 103. AMENDMENTS TO INTERNAL REVENUE CODE OF
1986.
(a) PROHIBITION OF HEALTH INSURANCE DISCRIMI-
NATION ON THE BASIS OF GENETIC SERVICES OR PRO-
TECTED GENETIC INFORMATION.—
(1) NO
ENROLLMENT
RESTRICTION
FOR
GE-
NETIC SERVICES.—Section 9802(a)(1)(F) of the In-
ternal Revenue Code of 1986 is amended by insert-
ing before the period ‘‘(or information about a re-
quest for or the receipt of genetic services by such
individual or family member of such individual)’’.
(2) NO DISCRIMINATION IN GROUP RATE BASED
ON PROTECTED GENETIC INFORMATION.—
(A) IN GENERAL.—Subchapter B of chap-
ter 100 of the Internal Revenue Code of 1986
is amended by adding at the end the following:
‘‘SEC. 
9813. 
PROHIBITING 
DISCRIMINATION 
AGAINST
GROUPS ON THE BASIS OF PROTECTED GE-
NETIC INFORMATION.
‘‘A group health plan shall not deny eligibility to a
group or adjust premium or contribution rates for a group
on the basis of protected genetic information concerning
an individual in the group (or information about a request
for or the receipt of genetic services by such individual
or family member of such individual).’’.
(B) CONFORMING AMENDMENTS.—
(i) Section 9802(b)(2)(A) of the Inter-
nal Revenue Code of 1986 is amended to
read as follows:
‘‘(A) to restrict the amount that an em-
ployer may be charged for coverage under a
group health plan, except as provided in section
9813; or’’.
(ii) Section 9831(a) of the Internal
Revenue Code of 1986 is amended by in-
serting ‘‘(other than subsections (a)(1)(F),
(b) (with respect to cases relating to ge-
netic information or information about a
request or receipt of genetic services by an
individual or family member of such indi-
vidual), (d) (e), (f), (g) or (h) of section
9802 or section 9813) after ‘‘chapter’’.
(b) LIMITATIONS
ON GENETIC TESTING
AND
ON
COLLECTION AND DISCLOSURE OF PROTECTED GENETIC
INFORMATION.—Section 9802 of the Internal Revenue
Code of 1986 is amended by adding at the end the fol-
lowing:
‘‘(d) GENETIC TESTING.—
‘‘(1) LIMITATION ON REQUESTING OR REQUIR-
ING GENETIC TESTING.—A group health plan may
not request or require an individual or a family
member of such individual to undergo a genetic test.
‘‘(2) RULE
OF
CONSTRUCTION.—Nothing in
this chapter shall be construed to limit the authority
of a health care professional, who is providing treat-
ment with respect to an individual and who is em-
ployed by a group health plan, to request that such
individual or family member of such individual un-
dergo a genetic test. Such a health care professional
shall not require that such individual or family mem-
ber undergo a genetic test.
‘‘(e) COLLECTION OF PROTECTED GENETIC INFOR-
MATION.—Except as provided in subsections (g) and (h),
a group health plan shall not request, require, collect, or
purchase protected genetic information concerning an in-
dividual (or information about a request for or the receipt
of genetic services by such individual or family member
of such individual).
‘‘(f) DISCLOSURE OF PROTECTED GENETIC INFOR-
MATION.—A group health plan shall not disclose protected
genetic information about an individual (or information
about a request for or the receipt of genetic services by
such individual or family member of such individual) to—
‘‘(1) any entity that is a member of the same
controlled group as such issuer or plan sponsor of
such group health plan;
‘‘(2) any other group health plan or health in-
surance issuer or any insurance agent, third party
administrator, or other person subject to regulation
under State insurance laws;
‘‘(3) the Medical Information Bureau or any
other person that collects, compiles, publishes, or
otherwise disseminates insurance information;
‘‘(4) the individual’s employer or any plan spon-
sor; or
‘‘(5) any other person the Secretary may speci-
fy in regulations.
‘‘(g) INFORMATION
FOR PAYMENT
FOR GENETIC
SERVICES.—
‘‘(1) IN GENERAL.—With respect to payment
for genetic services conducted concerning an indi-
vidual or the coordination of benefits, a group health
plan may request that the individual provide the
plan with evidence that such services were per-
formed.
‘‘(2) RULE
OF
CONSTRUCTION.—Nothing in
paragraph (1) shall be construed to—
‘‘(A) permit a group health plan to request
(or require) the results of the services referred
to in such paragraph; or
‘‘(B) require that a group health plan
make payment for services described in such
paragraph where the individual involved has re-
fused to provide evidence of the performance of
such services pursuant to a request by the plan
in accordance with such paragraph.
‘‘(h) INFORMATION
FOR
PAYMENT
OF
OTHER
CLAIMS.—With respect to the payment of claims for bene-
fits other than genetic services, a group health plan may
request that an individual provide protected genetic infor-
mation so long as such information—
‘‘(1) is used solely for the payment of a claim;
‘‘(2) is limited to information that is directly re-
lated to and necessary for the payment of such claim
and the claim would otherwise be denied but for the
protected genetic information; and
‘‘(3) is used only by an individual (or individ-
uals) within such plan or issuer who needs access to
such information for purposes of payment of a
claim.
‘‘(i) RULES OF CONSTRUCTION.—
‘‘(1) COLLECTION OR DISCLOSURE AUTHORIZED
BY INDIVIDUAL.—The provisions of subsections (e)
(regarding collection) and (f) shall not apply to an
individual if the individual (or legal representative
of, the individual) provides prior, knowing, vol-
untary, and written authorization for the collection
or disclosure of protected genetic information.
‘‘(2) DISCLOSURE FOR HEALTH CARE TREAT-
MENT.—Nothing in this section shall be construed to
limit or restrict the disclosure of protected genetic
information from a health care provider to another
health care provider for the purpose of providing
health care treatment to the individual involved.
‘‘(j) DEFINITIONS.—In this section:
‘‘(1) CONTROLLED
GROUP.—The term ‘con-
trolled group’ means any group treated as a single
employer under subsections (b), (c), (m), or (o) of
section 414.
‘‘(2) GROUP
HEALTH
PLAN, HEALTH
INSUR-
ANCE ISSUER.—The terms ‘group health plan’ and
‘health insurance issuer’ include a third party ad-
ministrator or other person acting for or on behalf
of such plan or issuer.’’.
(c) DEFINITIONS.—Section 9832(d) of the Internal
Revenue Code of 1986 is amended by adding at the end
the following:
‘‘(6) FAMILY
MEMBER.—The term ‘family
member’ means with respect to an individual—
‘‘(A) the spouse of the individual;
‘‘(B) a dependent child of the individual,
including a child who is born to or placed for
adoption with the individual; and
‘‘(C) all other individuals related by blood
to the individual or the spouse or child de-
scribed in subparagraph (A) or (B).
‘‘(7) GENETIC
INFORMATION.—The term ‘ge-
netic information’ means information about genes,
gene products, or inherited characteristics that may
derive from an individual or a family member of
such individual (including information about a re-
quest for or the receipt of genetic services by such
individual or family member of such individual).
‘‘(8) GENETIC
SERVICES.—The term ‘genetic
services’ means health services, including genetic
tests, provided to obtain, assess, or interpret genetic
information for diagnostic and therapeutic purposes,
and for genetic education and counseling.
‘‘(9) GENETIC TEST.—The term ‘genetic test’
means the analysis of human DNA, RNA, chro-
mosomes, proteins, and metabolites that detect
genotypes, mutations, or chromosomal changes.
‘‘(10) PROTECTED GENETIC INFORMATION.—
‘‘(A) IN GENERAL.—The term ‘protected
genetic information’ means—
‘‘(i) information about an individual’s
genetic tests;
‘‘(ii) information about genetic tests
of family members of the individual; or
‘‘(iii) information about the occur-
rence of a disease or disorder in family
members.
‘‘(B) LIMITATIONS.—The term ‘protected
genetic information’ shall not include—
‘‘(i) information about the sex or age
of the individual;
‘‘(ii) 
information 
about 
chemical,
blood, or urine analyses of the individual,
unless these analyses are genetic tests; or
‘‘(iii) 
information 
about 
physical
exams of the individual, and other informa-
tion that indicates the current health sta-
tus of the individual.’’.
(d) EFFECTIVE DATE.—
(1) IN GENERAL.—Except as provided in this
section, this section and the amendments made by
this section shall apply with respect to group health
plans for plan years beginning after October 1,
2002.
(2) SPECIAL
RULE
FOR
COLLECTIVE
BAR-
GAINING
AGREEMENTS.—In the case of a group
health plan maintained pursuant to one or more col-
lective bargaining agreements between employee rep-
resentatives and one or more employers ratified be-
fore the date of the enactment of this Act, this sec-
tion and the amendments made by this section shall
not apply to plan years beginning before the later
of—
(A) the date on which the last of the col-
lective bargaining agreements relating to the
plan terminates (determined without regard to
any extension thereof agreed to after the date
of the enactment of this Act), or
(B) October 1, 2002.
For purposes of subparagraph (A), any plan amend-
ment made pursuant to a collective bargaining
agreement relating to the plan which amends the
plan solely to conform to any requirement of the
amendments made by this section shall not be treat-
ed as a termination of such collective bargaining
agreement.
SEC. 104. AMENDMENTS TO TITLE XVIII OF THE SOCIAL SE-
CURITY ACT RELATING TO MEDIGAP.
(a) NONDISCRIMINATION.—
(1) IN
GENERAL.—Section 1882(s)(2) of the
Social Security Act (42 U.S.C. 1395ss(s)(2)) is
amended by adding at the end the following:
‘‘(E)(i) An issuer of a medicare supple-
mental policy shall not deny or condition the
issuance or effectiveness of the policy, and shall
not discriminate in the pricing of the policy (in-
cluding the adjustment of premium rates) of an
eligible individual on the basis of protected ge-
netic information concerning the individual (or
information about a request for, or the receipt
of, genetic services by such individual or family
member of such individual).
‘‘(ii) For purposes of clause (i), the terms
‘family member’, ‘genetic services’, and ‘pro-
tected genetic information’ shall have the mean-
ings given such terms in subsection (v).’’.
(2) EFFECTIVE DATE.—The amendment made
by paragraph (1) shall apply with respect to a policy
for policy years beginning after October 1, 2002.
(b) LIMITATIONS
ON GENETIC TESTING
AND
ON
COLLECTION AND DISCLOSURE OF PROTECTED GENETIC
INFORMATION.—
(1) IN GENERAL.—Section 1882 of the Social
Security Act (42 U.S.C. 1395ss) is amended by add-
ing at the end the following:
‘‘(v) LIMITATIONS ON GENETIC TESTING AND ON
COLLECTION AND DISCLOSURE OF PROTECTED GENETIC
INFORMATION.—
‘‘(1) GENETIC TESTING.—
‘‘(A) LIMITATION ON REQUESTING OR RE-
QUIRING
GENETIC
TESTING.—An issuer of a
medicare supplemental policy shall not request
or require an individual or a family member of
such individual to undergo a genetic test.
‘‘(B) RULE OF CONSTRUCTION.—Nothing
in this title shall be construed to limit the au-
thority of a health care professional, who is pro-
viding treatment with respect to an individual
and who is employed by an issuer of a medicare
supplemental policy, to request that such indi-
vidual or family member of such individual un-
dergo a genetic test. Such a health care profes-
sional shall not require that such individual or
family member undergo a genetic test.
‘‘(2) COLLECTION OF PROTECTED GENETIC IN-
FORMATION.—Except as provided in paragraphs (4)
and (5), an issuer of a medicare supplemental policy
shall not request, require, collect, or purchase pro-
tected genetic information concerning an individual
(or information about a request for or the receipt of
genetic services by such individual or family member
of such individual).
‘‘(3) DISCLOSURE OF PROTECTED GENETIC IN-
FORMATION.—An issuer of a medicare supplemental
policy shall not disclose protected genetic informa-
tion about an individual (or information about a re-
quest for or the receipt of genetic services by such
individual or family member of such individual) to—
‘‘(A) any entity that is a member of the
same controlled group as such issuer;
‘‘(B) any issuer of a medicare supple-
mental policy, group health plan or health in-
surance issuer, or any insurance agent, third
party administrator, or other person subject to
regulation under State insurance laws;
‘‘(C) the Medical Information Bureau or
any other person that collects, compiles, pub-
lishes, or otherwise disseminates insurance in-
formation;
‘‘(D) the individual’s employer or any plan
sponsor; or
‘‘(E) any other person the Secretary may
specify in regulations.
‘‘(4) INFORMATION
FOR
PAYMENT
FOR
GE-
NETIC SERVICES.—
‘‘(A) IN GENERAL.—With respect to pay-
ment for genetic services conducted concerning
an individual or the coordination of benefits, an
issuer of a medicare supplemental policy may
request that the individual provide the issuer
with evidence that such services were per-
formed.
‘‘(B) RULE OF CONSTRUCTION.—Nothing
in subparagraph (A) shall be construed to—
‘‘(i) permit an issuer to request (or
require) the results of the services referred
to in such subparagraph; or
‘‘(ii) require that an issuer make pay-
ment for services described in such sub-
paragraph where the individual involved
has refused to provide evidence of the per-
formance of such services pursuant to a re-
quest by the issuer in accordance with such
subparagraph.
‘‘(5) INFORMATION FOR PAYMENT OF OTHER
CLAIMS.—With respect to the payment of claims for
benefits other than genetic services, an issuer of a
medicare supplemental policy may request that an
individual provide protected genetic information so
long as such information—
‘‘(A) is used solely for the payment of a
claim;
‘‘(B) is limited to information that is di-
rectly related to and necessary for the payment
of such claim and the claim would otherwise be
denied but for the protected genetic informa-
tion; and
‘‘(C) is used only by an individual (or indi-
viduals) within such issuer who needs access to
such information for purposes of payment of a
claim.
‘‘(6) RULES OF CONSTRUCTION.—
‘‘(A) COLLECTION
OR
DISCLOSURE
AU-
THORIZED BY INDIVIDUAL.—The provisions of
paragraphs (2) (regarding collection) and (3)
shall not apply to an individual if the individual
(or legal representative of the individual) pro-
vides prior, knowing, voluntary, and written au-
thorization for the collection or disclosure of
protected genetic information.
‘‘(B) DISCLOSURE
FOR
HEALTH
CARE
TREATMENT.—Nothing in this section shall be
construed to limit or restrict the disclosure of
protected genetic information from a health
care provider to another health care provider
for the purpose of providing health care treat-
ment to the individual involved.
‘‘(7) VIOLATION OF GENETIC DISCRIMINATION
OR GENETIC DISCLOSURE PROVISIONS.—In any ac-
tion under this subsection against any administrator
of a medicare supplemental policy (including any
third party administrator or other person acting for
or on behalf of such policy) alleging a violation of
this subsection, the court may award any appro-
priate legal or equitable relief. Such relief may in-
clude a requirement for the payment of attorney’s
fees and costs, including the costs of expert wit-
nesses.
‘‘(8) CIVIL PENALTY.—The monetary provisions
of section 308(b)(2)(C) of Public Law 101–336 (42
U.S.C. 12188(b)(2)(C)) shall apply for purposes of
the Secretary enforcing the provisions of this sub-
section, except that any such relief awarded shall be
paid only into the general fund of the Treasury.
‘‘(9) SPECIAL RULE IN CASE OF GENETIC IN-
FORMATION.—This subsection (relating to genetic
information or information about a request for, or
the receipt of, genetic services by an individual or a
family member of such individual) shall not be con-
strued to supersede any provision of State law which
establishes, implements, or continues in effect a
standard, 
requirement, 
or 
remedy 
that 
more
completely—
‘‘(A) protects the confidentiality of genetic
information (including information about a re-
quest for, or the receipt of, genetic services by
an individual or a family member of such indi-
vidual) or the privacy of an individual or a fam-
ily member of the individual with respect to ge-
netic information (including information about
a request for, or the receipt of, genetic services
by an individual or a family member of such in-
dividual) than does this subsection; or
‘‘(B) prohibits discrimination on the basis
of genetic information than does this sub-
section.
‘‘(10) DEFINITIONS.—In this subsection:
‘‘(A) CONTROLLED
GROUP.—The term
‘controlled group’ means any group treated as
a single employer under subsection (b), (c),
(m), or (o) of section 414 of the Internal Rev-
enue Code of 1986.
‘‘(B) FAMILY MEMBER.—The term ‘family
member’ means with respect to an individual—
‘‘(i) the spouse of the individual;
‘‘(ii) a dependent child of the indi-
vidual, including a child who is born to or
placed for adoption with the individual; or
‘‘(iii) any other individuals related by
blood to the individual or to the spouse or
child described in clause (i) or (ii).
‘‘(C) GENETIC INFORMATION.—The term
‘genetic information’ means information about
genes, gene products, or inherited characteris-
tics that may derive from an individual or a
family member of such individual (including in-
formation about a request for, or the receipt of,
genetic services by such individual or family
member of such individual).
‘‘(D) GENETIC SERVICES.—The term ‘ge-
netic services’ means health services, including
genetic tests, provided to obtain, assess, or in-
terpret genetic information for diagnostic and
therapeutic purposes, and for genetic education
and counseling.
‘‘(E) GENETIC TEST.—The term ‘genetic
test’ means the analysis of human DNA, RNA,
chromosomes, proteins, and metabolites that de-
tect genotypes, mutations, or chromosomal
changes.
‘‘(F) ISSUER
OF
A
MEDICARE
SUPPLE-
MENTAL POLICY.—The term ‘issuer of a medi-
care supplemental policy’ includes a third-party
administrator or other person acting for or on
behalf of such issuer.
‘‘(G) 
PROTECTED
GENETIC
INFORMA-
TION.—
‘‘(i) IN
GENERAL.—The term ‘pro-
tected genetic information’ means—
‘‘(I) information about an indi-
vidual’s genetic tests;
‘‘(II) information about genetic
tests of family members of the indi-
vidual; or
‘‘(III) information about the oc-
currence of a disease or disorder in
family members.
‘‘(ii) LIMITATIONS.—The term ‘pro-
tected 
genetic 
information’ 
shall 
not
include—
‘‘(I) information about the sex or
age of the individual;
‘‘(II) information about chemical,
blood, or urine analyses of the indi-
vidual, unless these analyses are ge-
netic tests; or
‘‘(III) information about physical
exams of the individual, and other in-
formation that indicates the current
health status of the individual.’’.
(2) 
CONFORMING
AMENDMENT.—Section
1882(o) of the Social Security Act (42 U.S.C.
1395ss(o)) is amended by adding at the end the fol-
lowing:
‘‘(4) The issuer of the medicare supplemental
policy complies with subsection (s)(2)(E) and sub-
section (v).’’.
(3) EFFECTIVE DATE.—The amendments made
by this subsection shall apply with respect to an
issuer of a medicare supplemental policy for policy
years beginning after October 1, 2002.
(c) TRANSITION PROVISIONS.—
(1) IN GENERAL.—If the Secretary of Health
and Human Services identifies a State as requiring
a change to its statutes or regulations to conform its
regulatory program to the changes made by this sec-
tion, the State regulatory program shall not be con-
sidered to be out of compliance with the require-
ments of section 1882 of the Social Security Act due
solely to failure to make such change until the date
specified in paragraph (4).
(2) NAIC STANDARDS.—If, not later than June
30, 2002, the National Association of Insurance
Commissioners (in this subsection referred to as the
‘‘NAIC’’) modifies its NAIC Model Regulation relat-
ing to section 1882 of the Social Security Act (re-
ferred to in such section as the 1991 NAIC Model
Regulation, as subsequently modified) to conform to
the amendments made by this section, such revised
regulation incorporating the modifications shall be
considered to be the applicable NAIC model regula-
tion (including the revised NAIC model regulation
and the 1991 NAIC Model Regulation) for the pur-
poses of such section.
(3) SECRETARY
STANDARDS.—If the NAIC
does not make the modifications described in para-
graph (2) within the period specified in such para-
graph, the Secretary of Health and Human Services
shall, not later than October 1, 2002, make the
modifications described in such paragraph and such
revised regulation incorporating the modifications
shall be considered to be the appropriate regulation
for the purposes of such section.
(4) DATE SPECIFIED.—
(A) IN
GENERAL.—Subject to subpara-
graph (B), the date specified in this paragraph
for a State is the earlier of—
(i) the date the State changes its stat-
utes or regulations to conform its regu-
latory program to the changes made by
this section, or
(ii) October 1, 2002.
(B) ADDITIONAL LEGISLATIVE ACTION RE-
QUIRED.—In the case of a State which the Sec-
retary identifies as—
(i) requiring State legislation (other
than legislation appropriating funds) to
conform its regulatory program to the
changes made in this section, but
(ii) having a legislature which is not
scheduled to meet in 2002 in a legislative
session in which such legislation may be
considered,
the date specified in this paragraph is the first
day of the first calendar quarter beginning after
the close of the first legislative session of the
State legislature that begins on or after July 1,
2002. For purposes of the previous sentence, in
the case of a State that has a 2-year legislative
session, each year of such session shall be
deemed to be a separate regular session of the
State legislature.
TITLE II—PROHIBITION OF EM-
PLOYMENT DISCRIMINATION
ON 
THE 
BASIS 
OF 
PRO-
TECTED GENETIC INFORMA-
TION
SEC. 201. DEFINITIONS.
In this title:
(1) 
EMPLOYEE; 
EMPLOYER; 
EMPLOYMENT
AGENCY; 
LABOR
ORGANIZATION; 
MEMBER.—The
terms ‘‘employee’’, ‘‘employer’’, ‘‘employment agen-
cy’’, and ‘‘labor organization’’ have the meanings
given such terms in section 701 of the Civil Rights
Act of 1964 (42 U.S.C. 2000e), except that the
terms ‘‘employee’’ and ‘‘employer’’ shall also include
the meanings given such terms in section 717 of the
Civil Rights Act of 1964 (42 U.S.C. 2000e–16). The
terms ‘‘employee’’ and ‘‘member’’ include an appli-
cant for employment and an applicant for member-
ship in a labor organization, respectively.
(2) FAMILY MEMBER.—The term ‘‘family mem-
ber’’ means with respect to an individual—
(A) the spouse of the individual;
(B) a dependent child of the individual, in-
cluding a child who is born to or placed for
adoption with the individual; or
(C) any other individuals related by blood
to the individual or to the spouse or child de-
scribed in subparagraph (A) or (B).
(3) GENETIC MONITORING.—The term ‘‘genetic
monitoring’’ means the periodic examination of em-
ployees to evaluate acquired modifications to their
genetic material, such as chromosomal damage or
evidence of increased occurrence of mutations, that
may have developed in the course of employment due
to exposure to toxic substances in the workplace, in
order to identify, evaluate, and respond to the ef-
fects of or control adverse environmental exposures
in the workplace.
(4) GENETIC
SERVICES.—The term ‘‘genetic
services’’ means health services, including genetic
tests, provided to obtain, assess, or interpret genetic
information for diagnostic and therapeutic purposes,
and for genetic education and counseling.
(5) GENETIC TEST.—The term ‘‘genetic test’’
means the analysis of human DNA, RNA, chro-
mosomes, proteins, and metabolites that detect
genotypes, mutations, or chromosomal changes.
(6) PROTECTED GENETIC INFORMATION.—
(A) IN
GENERAL.—The term ‘‘protected
genetic information’’ means—
(i) information about an individual’s
genetic tests;
(ii) information about genetic tests of
family members of the individual; or
(iii) information about the occurrence
of a disease or disorder in family members.
(B) LIMITATIONS.—The term ‘‘protected
genetic information’’ shall not include—
(i) information about the sex or age of
the individual;
(ii) information about chemical, blood,
or urine analyses of the individual, unless
these analyses are genetic tests; or
(iii) information about physical exams
of the individual, and other information
that indicates the current health status of
the individual.
SEC. 202. EMPLOYER PRACTICES.
(a) IN GENERAL.—It shall be an unlawful employ-
ment practice for an employer—
(1) to fail or refuse to hire or to discharge any
individual, or otherwise to discriminate against any
individual with respect to the compensation, terms,
conditions, or privileges of employment of the indi-
vidual, because of protected genetic information with
respect to the individual (or information about a re-
quest for or the receipt of genetic services by such
individual or family member of such individual;
(2) to limit, segregate, or classify the employees
of the employer in any way that would deprive or
tend to deprive any individual of employment oppor-
tunities or otherwise adversely affect the status of
the individual as an employee, because of protected
genetic information with respect to the individual, or
information about a request for or the receipt of ge-
netic services by such individual or family member
of such individual; or
(3) to request, require, collect or purchase pro-
tected genetic information with respect to an indi-
vidual or a family member of the individual except—
(A) where used for genetic monitoring of
biological effects of toxic substances in the
workplace, but only if—
(i) the employee has provided prior,
knowing, voluntary, and written authoriza-
tion;
(ii) the employee is informed of indi-
vidual monitoring results;
(iii) the monitoring conforms to any
genetic monitoring regulations that may be
promulgated by the Secretary of Labor
pursuant to the Occupational Safety and
Health Act of 1970 (29 U.S.C. 651 et
seq.) or the Federal Mine Safety and
Health Act of 1977 (30 U.S.C. 801 et
seq.); and
(iv) the employer, excluding any li-
censed health care professional that is in-
volved in the genetic monitoring program,
receives the results of the monitoring only
in aggregate terms that do not disclose the
identity of specific employees; or
(B) where genetic services are offered by
the employer and the employee provides prior,
knowing, voluntary, and written authorization,
and only the employee or family member of
such employee receives the results of such serv-
ices.
(b) LIMITATION.—In the case of protected genetic in-
formation to which subparagraph (A) or (B) of subsection
(a)(3) applies, such information may not be used in viola-
tion of paragraph (1) or (2) of subsection (a).
SEC. 203. EMPLOYMENT AGENCY PRACTICES.
It shall be an unlawful employment practice for an
employment agency—
(1) to fail or refuse to refer for employment, or
otherwise to discriminate against, any individual be-
cause of protected genetic information with respect
to the individual (or information about a request for
or the receipt of genetic services by such individual
or family member of such individual);
(2) to limit, segregate, or classify individuals or
fail or refuse to refer for employment any individual
in any way that would deprive or tend to deprive any
individual of employment opportunities or would
limit the employment opportunities or otherwise ad-
versely affect the status of the individual as an em-
ployee, because of protected genetic information with
respect to the individual (or information about a re-
quest for or the receipt of genetic services by such
individual or family member of such individual);
(3) to request, require, collect or purchase pro-
tected genetic information with respect to an indi-
vidual (or information about a request for or the re-
ceipt of genetic services by such individual or family
member of such individual); or
(4) to cause or attempt to cause an employer to
discriminate against an individual in violation of this
title.
SEC. 204. LABOR ORGANIZATION PRACTICES.
It shall be an unlawful employment practice for a
labor organization—
(1) to exclude or to expel from the membership
of the organization, or otherwise to discriminate
against, any individual because of protected genetic
information with respect to the individual (or infor-
mation about a request for or the receipt of genetic
services by such individual or family member of such
individual);
(2) to limit, segregate, or classify the members
of the organization, or fail or refuse to refer for em-
ployment any individual, in any way that would de-
prive or tend to deprive any individual of employ-
ment opportunities, or would limit the employment
opportunities or otherwise adversely affect the status
of the individual as an employee, because of pro-
tected genetic information with respect to the indi-
vidual (or information about a request for or the re-
ceipt of genetic services by such individual or family
member of such individual);
(3) to request, require, collect or purchase pro-
tected genetic information with respect to an indi-
vidual (or information about a request for or the re-
ceipt of genetic services by such individual or family
member of such individual); or
(4) to cause or attempt to cause an employer to
discriminate against an individual in violation of this
title.
SEC. 205. TRAINING PROGRAMS.
It shall be an unlawful employment practice for any
employer, labor organization, or joint labor-management
committee controlling apprenticeship or other training or
retraining, including on-the-job training programs—
(1) to discriminate against any individual be-
cause of protected genetic information with respect
to the individual (or information about a request for
or the receipt of genetic services by such individual),
in admission to, or employment in, any program es-
tablished to provide apprenticeship or other training
or retraining;
(2) to limit, segregate, or classify the members
of the organization, or fail or refuse to refer for em-
ployment any individual, in any way that would de-
prive or tend to deprive any individual of employ-
ment opportunities, or would limit the employment
opportunities or otherwise adversely affect the status
of the individual as an employee, because of pro-
tected genetic information with respect to the indi-
vidual (or information about a request for or receipt
of genetic services by such individual or family mem-
ber of such individual);
(3) to request, require, collect or purchase pro-
tected genetic information with respect to an indi-
vidual (or information about a request for or receipt
of genetic services by such individual or family mem-
ber of such individual); or
(4) to cause or attempt to cause an employer to
discriminate against an individual in violation of this
title.
SEC. 206. MAINTENANCE AND DISCLOSURE OF PROTECTED
GENETIC INFORMATION.
(a) MAINTENANCE OF PROTECTED GENETIC INFOR-
MATION.—If an employer possesses protected genetic in-
formation about an employee (or information about a re-
quest for or receipt of genetic services by such employee
or family member of such employee), such information
shall be treated or maintained as part of the employee’s
confidential medical records.
(b) DISCLOSURE OF PROTECTED GENETIC INFORMA-
TION.—An employer shall not disclose protected genetic
information (or information about a request for or receipt
of genetic services by such employee or family member of
such employee) except—
(1) to the employee who is the subject of the in-
formation at the request of the employee;
(2) to an occupational or other health re-
searcher if the research is conducted in compliance
with the regulations and protections provided for
under part 46 of title 45, Code of Federal Regula-
tions;
(3) under legal compulsion of a Federal court
order, except that if the court order was secured
without the knowledge of the individual to whom the
information refers, the employer shall provide the in-
dividual with adequate notice to challenge the court
order unless the court order also imposes confiden-
tiality requirements; and
(4) to government officials who are inves-
tigating compliance with this Act if the information
is relevant to the investigation.
SEC. 207. CIVIL ACTION.
(a) IN GENERAL.—One or more employees, members
of a labor organization, or participants in training pro-
grams may bring an action in a Federal or State court
of competent jurisdiction against an employer, employ-
ment agency, labor organization, or joint labor-manage-
ment committee or training program who commits a viola-
tion of this title.
(b) ENFORCEMENT BY THE EQUAL EMPLOYMENT
OPPORTUNITY COMMISSION.—The powers, remedies, and
procedures set forth in sections 705, 706, 707, 709, 710,
and 717 of the Civil Rights Act of 1964 (42 U.S.C.
2000e–4, 2000e–5, 2000e–6, 2000e–8, 2000e–9, and
2000e–16) shall be the powers, remedies, and procedures
provided to the Equal Employment Opportunity Commis-
sion to enforce this title. The Commission may promulgate
regulations to implement these powers, remedies, and pro-
cedures.
(c) REMEDY.—A Federal or State court may award
any appropriate legal or equitable relief under this section.
Such relief may include a requirement for the payment
of attorney’s fees and costs, including the costs of experts.
SEC. 208. CONSTRUCTION.
Nothing in this title shall be construed to—
(1) limit the rights or protections of an indi-
vidual under the Americans with Disabilities Act of
1990 (42 U.S.C. 12101 et seq.), including coverage
afforded to individuals under section 102 of such
Act;
(2) limit the rights or protections of an indi-
vidual under the Rehabilitation Act of 1973 (29
U.S.C. 701 et seq.);
(3) limit the rights or protections of an indi-
vidual under any other Federal or State statute that
provides equal or greater protection to an individual
than the rights accorded under this Act;
(4) apply to the Armed Forces Repository of
Specimen Samples for the Identification of Remains;
or
(5) limit the statutory or regulatory authority
of the Occupational Safety and Health Administra-
tion or the Mine Safety and Health Administration
to promulgate or enforce workplace safety and
health laws and regulations.
SEC. 209. AUTHORIZATION OF APPROPRIATIONS.
There are authorized to be appropriated such sums
as may be necessary to carry out this title.
SEC. 210. EFFECTIVE DATE.
This title shall become effective on October 1, 2002.
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