I
106TH CONGRESS
1ST SESSION
H. R. 306
To prohibit discrimination against individuals and their family members on
the basis of genetic information or a request for genetic services.
IN THE HOUSE OF REPRESENTATIVES
JANUARY 6, 1999
Ms. SLAUGHTER (for herself, Mr. ABERCROMBIE, Mr. ACKERMAN, Mr.
BALDACCI, Mr. BARRETT of Wisconsin, Mr. BENTSEN, Mr. BOUCHER,
Mrs. CAPPS, Mr. DEFAZIO, Mr. DELAHUNT, Ms. DELAURO, Mr. DIXON,
Mr. FILNER, Mr. FORD, Mr. FRANK of Massachusetts, Mr. FROST, Mr.
GEJDENSON, Mr. GREEN of Texas, Mr. GUTIERREZ, Mr. HINCHEY, Ms.
HOOLEY of Oregon, Mr. HORN, Ms. JACKSON-LEE of Texas, Mr. KEN-
NEDY, Mr. KILDEE, Ms. KILPATRICK, Mr. KING, Mr. KLECZKA, Mr. LA-
FALCE, Mr. LEVIN, Mrs. LOWEY, Mrs. MALONEY of New York, Mr. MAS-
CARA, Ms. MCCARTHY of Missouri, Mr. MCNULTY, Mr. MEEHAN, Mr.
MEEKS of New York, Ms. MILLENDER-MCDONALD, Mr. GEORGE MILLER
of California, Mrs. MINK of Hawaii, Mr. MORAN of Virginia, Mrs.
MORELLA, Ms. NORTON, Mr. PALLONE, Mr. PRICE of North Carolina,
Mr. REGULA, Mr. ROMERO-BARCELO´, Ms. ROYBAL-ALLARD, Mr. ROTH-
MAN, Mr. SANDERS, Mr. SANDLIN, Mr. SCOTT, Mr. SERRANO, Mr. SHER-
MAN, Mr. SISISKY, Mr. SNYDER, Mr. STARK, Mrs. THURMAN, Mr.
WALSH, Ms. WATERS, Mr. WAXMAN, Mr. WISE, Ms. WOOLSEY, Mr.
WYNN, and Ms. LEE) introduced the following bill; which was referred
to the Committee on 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 con-
cerned
A BILL
To prohibit discrimination against individuals and their fam-
ily members on the basis of genetic information or a
request for genetic services.
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 Information
Nondiscrimination in Health Insurance Act of 1999’’.
SEC. 2. AMENDMENTS TO EMPLOYEE RETIREMENT INCOME
SECURITY ACT OF 1974.
(a) IN GENERAL.—Subpart B of part 7 of subtitle
B of title I of the Employee Retirement Income Security
Act of 1974 is amended by adding after section 713 the
following new section:
‘‘SEC. 714. PROHIBITION OF HEALTH INSURANCE DISCRIMI-
NATION ON THE BASIS OF GENETIC INFOR-
MATION.
‘‘(a) IN GENERAL.—In the case of benefits consisting
of medical care provided under a group health plan or in
the case of health insurance coverage offered by a health
insurance issuer in connection with a group health plan,
the plan or issuer may not deny, cancel, or refuse to renew
such benefits or such coverage, or vary the premiums,
terms, or conditions for such benefits or such coverage,
for any participant or beneficiary under the plan—
‘‘(1) on the basis of genetic information; or
‘‘(2) on the basis that the participant or bene-
ficiary has requested or received genetic services.
‘‘(b) LIMITATION ON COLLECTION AND DISCLOSURE
OF INFORMATION.—
‘‘(1) IN GENERAL.—A group health plan, or a
health insurance issuer offering health insurance
coverage in connection with a group health plan,
may not request or require a participant or bene-
ficiary (or an applicant for coverage as a participant
or beneficiary) to disclose to the plan or issuer ge-
netic information about the participant, beneficiary,
or applicant.
‘‘(2) REQUIREMENT
OF
PRIOR
AUTHORIZA-
TION.—A group health plan, or a health insurance
issuer offering health insurance coverage in connec-
tion with a group health plan, may not disclose ge-
netic information about a participant or beneficiary
(or an applicant for coverage as a participant or
beneficiary) without the prior written authorization
of the participant, beneficiary, or applicant or of the
legal representative thereof. Such authorization is
required for each disclosure and shall include an
identification of the person to whom the disclosure
would be made.
‘‘(c) DEFINITIONS.—For purposes of this section—
‘‘(1) 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 the
individual.
‘‘(2) GENETIC
SERVICES.—The term ‘genetic
services’ means health services provided to obtain,
assess, and interpret genetic information for diag-
nostic and therapeutic purposes, and for genetic
education and counselling.
‘‘(3) FAMILY
MEMBER.—The term ‘family
member’ means, with respect to an individual, an-
other individual related by blood to that individual,
or a spouse or adopted child of the individual.’’.
(b) DAMAGES.—Section 502(c) of such Act (29
U.S.C. 1132(c)) is amended by adding at the end the fol-
lowing new paragraph:
‘‘(7) Any group health plan (as defined in section
733(a)) and any health insurance issuer (as defined in sec-
tion 733(b)(2)) who fails to meet the requirements of sec-
tion 714 with respect to any participant, beneficiary, or
applicant referred to in such section may in the court’s
discretion be liable to such participant, beneficiary, or ap-
plicant for compensatory, consequential, and punitive
damages.’’.
(c) CLERICAL AMENDMENT.—The table of contents
in section 1 of such Act is amended by inserting after the
item relating to section 713 the following new item:
‘‘Sec. 714. Prohibition of health insurance discrimination on the basis of genetic
information.’’.
(d) EFFECTIVE DATE.—The amendments made by
this section shall apply with respect to group health plans
for plan years beginning after 1 year after the date of
the enactment of this Act.
SEC. 3. AMENDMENTS TO THE PUBLIC HEALTH SERVICE
ACT.
(a) AMENDMENT RELATING TO THE GROUP MAR-
KET.—
(1) IN GENERAL.—Subpart 2 of part A of title
XXVII of the Public Health Service Act is amended
by adding after section 2706 the following new sec-
tion:
‘‘SEC. 2707. PROHIBITION OF HEALTH INSURANCE DIS-
CRIMINATION ON THE BASIS OF GENETIC IN-
FORMATION.
‘‘(a) IN GENERAL.—In the case of benefits consisting
of medical care provided under a group health plan or in
the case of health insurance coverage offered by a health
insurance issuer in connection with a group health plan,
the plan or issuer may not deny, cancel, or refuse to renew
such benefits or such coverage, or vary the premiums,
terms, or conditions for such benefits or such coverage,
for any participant or beneficiary under the plan—
‘‘(1) on the basis of genetic information; or
‘‘(2) on the basis that the participant or bene-
ficiary has requested or received genetic services.
‘‘(b) LIMITATION ON COLLECTION AND DISCLOSURE
OF INFORMATION.—
‘‘(1) IN GENERAL.—A group health plan, or a
health insurance issuer offering health insurance
coverage in connection with a group health plan,
may not request or require a participant or bene-
ficiary (or an applicant for coverage as a participant
or beneficiary) to disclose to the plan or issuer ge-
netic information about the participant, beneficiary,
or applicant.
‘‘(2) REQUIREMENT
OF
PRIOR
AUTHORIZA-
TION.—A group health plan, or a health insurance
issuer offering health insurance coverage in connec-
tion with a group health plan, may not disclose ge-
netic information about a participant or beneficiary
(or an applicant for coverage as a participant or
beneficiary) without the prior written authorization
of the participant, beneficiary, or applicant or of the
legal representative thereof. Such authorization is
required for each disclosure and shall include an
identification of the person to whom the disclosure
would be made.
‘‘(c) DEFINITIONS.—For purposes of this section—
‘‘(1) 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 the
individual.
‘‘(2) GENETIC
SERVICES.—The term ‘genetic
services’ means health services provided to obtain,
assess, and interpret genetic information for diag-
nostic and therapeutic purposes, and for genetic
education and counselling.
‘‘(3) FAMILY
MEMBER.—The term ‘family
member’ means, with respect to an individual, an-
other individual related by blood to that individual,
or a spouse or adopted child of the individual.’’.
(2) EFFECTIVE DATE.—The amendment made
by this subsection shall apply with respect to group
health plans for plan years beginning after 1 year
after the date of the enactment of this Act.
(b) AMENDMENT RELATING
TO
THE INDIVIDUAL
MARKET.—
(1) IN GENERAL.—Subpart 3 of part B of title
XXVII of such Act is amended by adding after sec-
tion 2752 the following new section:
‘‘SEC. 2753. PROHIBITION OF HEALTH INSURANCE DIS-
CRIMINATION ON THE BASIS OF GENETIC IN-
FORMATION.
‘‘The provisions of section 2707 shall apply to health
insurance coverage offered by a health insurance issuer
in the individual market in the same manner as it applies
to health insurance coverage offered by a health insurance
issuer in connection with a group health plan in the small
or large group market.’’.
(2) EFFECTIVE DATE.—The amendment made
by this subsection shall apply with respect to health
insurance coverage offered, sold, issued, renewed, in
effect, or operated in the individual market after 1
year after the date of the enactment of this Act.
(c) ACTION FOR DAMAGES.—Section 2761 of such
Act (29 U.S.C. 300gg–61) is amended by adding at the
end the following new subsection:
‘‘(c) ACTION FOR DAMAGES
‘‘(1) IN
GENERAL.—In any case in which a
group health plan or a health insurance issuer fails
to meet the applicable requirements of section 2707
or 2753 with respect to any individual who is a plan
participant or beneficiary in such a plan, a covered
individual, or an applicant for coverage, such indi-
vidual may bring a civil action under this section. In
any such action, such plan or issuer may in the
court’s discretion be liable to such individual for
compensatory, consequential, and punitive damages.
‘‘(2) ADDITIONAL PROVISIONS.—For purposes
of this subsection, the provisions of subsections (d),
(e), (f), (g), (h), and (j) of section 502 of the Em-
ployee Retirement Income Security Act of 1974 shall
apply in connection with such action, the plaintiff in
such action, and the Secretary of Health and
Human Services in the same manner and to the
same extent as such provisions apply in connection
with actions under such section 502, plaintiffs in
such actions, and the Secretary of Labor.’’.
SEC. 4. AMENDMENTS TO TITLE XVIII OF THE SOCIAL SE-
CURITY ACT RELATING TO MEDIGAP.
(a) IN GENERAL.—Section 1882(s)(2) of the Social
Security Act (42 U.S.C. 1395ss(s)) is amended by adding
at the end the following new subparagraph:
‘‘(E)(i) An issuer of a medicare supplemental policy
(as defined in section 1882(g)) may not deny or condition
the issuance or effectiveness of the policy, and may not
discriminate in the pricing of the policy of an eligible
individual—
‘‘(I) on the basis of genetic information; or
‘‘(II) on the basis that the individual or a fam-
ily member of the individual has requested or re-
ceived genetic services.
‘‘(ii) For purposes of this subparagraph—
‘‘(I) The term ‘genetic information’ means in-
formation about genes, gene products, or inherited
characteristics that may derive from an individual or
a family member of the individual.
‘‘(II) The term ‘genetic services’ means health
services provided to obtain, assess, and interpret ge-
netic information for diagnostic and therapeutic pur-
poses, and for genetic education and counselling.
‘‘(III) The term ‘family member’ means, with
respect to an individual, another individual related
by blood to that individual, or a spouse or adopted
child of the individual.’’.
(b) ACTION FOR DAMAGES.—Section 1882(s) of such
Act is amended further by adding at the end the following
new paragraph:
‘‘(4)(A) In any case in which a medicare supple-
mental policy fails to meet the applicable requirements of
paragraph (2)(E) with respect to any individual who is
a covered individual or an applicant for coverage, such in-
dividual may bring a civil action under this paragraph. In
any such action, issuer of such policy may in the court’s
discretion be liable to such individual for compensatory,
consequential, and punitive damages.
‘‘(B) For purposes of this paragraph, the provisions
of subsections (d), (e), (f), (g), (h), and (j) of section 502
of the Employee Retirement Income Security Act of 1974
shall apply in connection with such action, the plaintiff
in such action, and the Secretary of Health and Human
Services in the same manner and to the same extent as
such provisions apply in connection with actions under
such section 502, plaintiffs in such actions, and the Sec-
retary of Labor.’’.
(c) EFFECTIVE DATE.—The amendments made by
this section shall apply with respect to medicare supple-
mental policies offered, sold, issued, renewed, in effect, or
operated in the individual market after 1 year after the
date of the enactment of this Act.
SEC. 5. AMENDMENTS OF INTERNAL REVENUE CODE OF
1986.
(a) IN GENERAL.—Subchapter B of chapter 100 of
the Internal Revenue Code of 1986 (relating to other
group health plan requirements) is amended by adding at
the end the following new section:
‘‘SEC. 9813. PROHIBITION OF DISCRIMINATION BY GROUP
HEALTH PLANS ON BASIS OF GENETIC IN-
FORMATION.
‘‘(a) IN GENERAL.—In the case of benefits consisting
of medical care provided under a group health plan or in
the case of health insurance coverage offered by a health
insurance issuer in connection with a group health plan,
the plan or issuer may not deny, cancel, or refuse to renew
such benefits or such coverage, or vary the premiums,
terms, or conditions for such benefits or such coverage,
for any participant or beneficiary under the plan—
‘‘(1) on the basis of genetic information; or
‘‘(2) on the basis that the participant or bene-
ficiary has requested or received genetic services.
‘‘(b) LIMITATION ON COLLECTION AND DISCLOSURE
OF INFORMATION.—
‘‘(1) IN GENERAL.—A group health plan, or a
health insurance issuer offering health insurance
coverage in connection with a group health plan,
may not request or require a participant or bene-
ficiary (or an applicant for coverage as a participant
or beneficiary) to disclose to the plan or issuer ge-
netic information about the participant, beneficiary,
or applicant.
‘‘(2) REQUIREMENT
OF
PRIOR
AUTHORIZA-
TION.—A group health plan, or a health insurance
issuer offering health insurance coverage in connec-
tion with a group health plan, may not disclose ge-
netic information about a participant or beneficiary
(or an applicant for coverage as a participant or
beneficiary) without the prior written authorization
of the participant, beneficiary, or applicant or of the
legal representative thereof. Such authorization is
required for each disclosure and shall include an
identification of the person to whom the disclosure
would be made.
‘‘(c) DEFINITIONS.—For purposes of this section—
‘‘(1) 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 the
individual.
‘‘(2) GENETIC
SERVICES.—The term ‘genetic
services’ means health services provided to obtain,
assess, and interpret genetic information for diag-
nostic and therapeutic purposes, and for genetic
education and counselling.
‘‘(3) FAMILY
MEMBER.—The term ‘family
member’ means, with respect to an individual, an-
other individual related by blood to that individual,
or a spouse or adopted child of the individual.’’.
(b) TECHNICAL AND CONFORMING AMENDMENTS.—
(1) Paragraph (1) of section 4980D(f) of such
Code (relating to failure to meet certain group
health plan requirements) is amended by adding at
the end the following new sentence: ‘‘For purposes
of applying this section with respect to the require-
ments of section 9813, the term ‘group health plan’
includes an issuer (within the meaning of section
9811).’’
(2) The table of sections for subchapter B of
chapter 100 of such Code is amended by adding at
the end the following new item:
‘‘Sec. 9813. Prohibition of discrimination by group health plans
on basis of genetic information.’’.
(c) EFFECTIVE DATE.—The amendments made by
this section shall apply with respect to group health plans
for plan years beginning after 1 year after the date of
the enactment of this Act.
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