[Congressional Bills 106th Congress]
[From the U.S. Government Publishing Office]
[S. 543 Introduced in Senate (IS)]
106th CONGRESS
1st Session
S. 543
To prohibit discrimination on the basis of genetic information with
respect to health insurance.
_______________________________________________________________________
IN THE SENATE OF THE UNITED STATES
March 4, 1999
Ms. Snowe (for herself, Mr. Frist, Mr. Jeffords Mr. Hagel, Ms.
Collins, and Mr. Enzi) introduced the following bill; which was read
twice and referred to the Committee on Health Education, Labor, and
Pensions
_______________________________________________________________________
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 Representatives 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) Prohibition of Health Discrimination on the Basis of Genetic
Information or Genetic Services.--
(1) No enrollment restriction for genetic services.--
Section 702(a)(1)(F) of the Employee Retirement Income Security
Act of 1974 (29 U.S.C. 1182(a)(1)(F)) is amended by inserting
before the period the following: ``(including information about
a request for or receipt of genetic services)''.
(2) No discrimination in group premiums based on predictive
genetic information.--Subpart B of part 7 of subtitle B of
title I of the Employee Retirement Income Security Act of 1974,
as amended by the Omnibus Consolidated and Emergency
Supplemental Appropriations Act, 1999 (Public Law 105-277), is
amended by adding at the end the following:
``SEC. 714. PROHIBITING PREMIUM DISCRIMINATION AGAINST GROUPS ON THE
BASIS OF PREDICTIVE GENETIC INFORMATION.
``A group health plan, or a health insurance issuer offering group
health insurance coverage in connection with a group health plan, shall
not adjust premium or contribution amounts for a group on the basis of
predictive genetic information concerning an individual in the group or
a family member of the individual (including information about a
request for or receipt of genetic services).''.
(3) Conforming amendments.--
(A) In general.--Section 702(b) of the Employee
Retirement Income Security Act of 1974 (29 U.S.C.
1182(b)) is amended by adding at the end the following:
``(3) Reference to related provision.--For a provision
prohibiting the adjustment of premium or contribution amounts
for a group under a group health plan on the basis of
predictive genetic information (including information about a
request for or receipt of genetic services), see section
714.''.
(B) Table of contents.--The table of contents in
section 1 of the Employee Retirement Income Security
Act of 1974 is amended by inserting after the item
relating to section 713 the following new item:
``Sec. 714. Prohibiting premium discrimination against groups on the
basis of predictive genetic information.''.
(b) Limitation on Collection of Predictive 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) Collection of Predictive Genetic Information.--
``(1) Limitation on requesting or requiring predictive
genetic information.--Except as provided in paragraph (2), 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 predictive genetic information
concerning an individual or a family member of the individual
(including information about a request for or receipt of
genetic services).
``(2) Information needed for diagnosis, treatment, or
payment.--
``(A) In general.--Notwithstanding paragraph (1), a
group health plan, or a health insurance issuer
offering health insurance coverage in connection with a
group health plan, that provides health care items and
services to an individual or dependent may request (but
may not require) that such individual or dependent
disclose, or authorize the collection or disclosure of,
predictive genetic information for purposes of
diagnosis, treatment, or payment relating to the
provision of health care items and services to such
individual or dependent.
``(B) Notice of confidentiality practices and
description of safeguards.--As a part of a request
under subparagraph (A), the group health plan, or a
health insurance issuer offering health insurance
coverage in connection with a group health plan, shall
provide to the individual or dependent a description of
the procedures in place to safeguard the
confidentiality, as described in subsection (d), of
such predictive genetic information.
``(d) Confidentiality With Respect to Predictive Genetic
Information.--
``(1) Notice of confidentiality practices.--
``(A) Preparation of written notice.--A group
health plan, or a health insurance issuer offering
health insurance coverage in connection with a group
health plan, shall post or provide, in writing and in a
clear and conspicuous manner, notice of the plan or
issuer's confidentiality practices, that shall
include--
``(i) a description of an individual's
rights with respect to predictive genetic
information;
``(ii) the procedures established by the
plan or issuer for the exercise of the
individual's rights; and
``(iii) the right to obtain a copy of the
notice of the confidentiality practices
required under this subsection.
``(B) Model notice.--The Secretary, in consultation
with the National Committee on Vital and Health
Statistics and the National Association of Insurance
Commissioners, and after notice and opportunity for
public comment, shall develop and disseminate model
notices of confidentiality practices. Use of the model
notice shall serve as a defense against claims of
receiving inappropriate notice.
``(2) Establishment of safeguards.--A group health plan, or
a health insurance issuer offering health insurance coverage in
connection with a group health plan, shall establish and
maintain appropriate administrative, technical, and physical
safeguards to protect the confidentiality, security, accuracy,
and integrity of predictive genetic information created,
received, obtained, maintained, used, transmitted, or disposed
of by such plan or issuer.''.
(c) 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--
``(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 described in
subparagraph (A) or (B).
``(6) Genetic information.--The term `genetic information'
means information about genes, gene products, or inherited
characteristics that may derive from an individual or a family
member (including information about a request for or receipt of
genetic services).
``(7) Genetic services.--The term `genetic services' means
health services provided to obtain, assess, or interpret
genetic information for diagnostic and therapeutic purposes,
and for genetic education and counseling.
``(8) Predictive genetic information.--
``(A) In general.--The term `predictive genetic
information' means, in the absence of symptoms,
clinical signs, or a diagnosis of the condition related
to such information--
``(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) Exceptions.--The term `predictive genetic
information' shall not include--
``(i) information about the sex or age of
the individual;
``(ii) information derived from physical
tests, such as the chemical, blood, or urine
analyses of the individual including
cholesterol tests; and
``(iii) information about physical exams of
the individual.
``(9) Genetic test.--The term `genetic test' means the
analysis of human DNA, RNA, chromosomes, proteins, and certain
metabolites, including analysis of genotypes, mutations,
phenotypes, or karyotypes, for the purpose of predicting risk
of disease in asymptomatic or undiagnosed individuals.''.
(d) Effective Date.--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 1 year after the
date of the enactment of this Act.
SEC. 3. AMENDMENTS TO THE PUBLIC HEALTH SERVICE ACT.
(a) Amendments Relating to the Group Market.--
(1) Prohibition of health discrimination on the basis of
genetic information in the group market.--
(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 before the period the following: ``(including
information about a request for or receipt of genetic
services)''.
(B) No discrimination in premiums based on
predictive genetic information.--Subpart 2 of part A of
title XXVII of the Public Health Service Act, as
amended by the Omnibus Consolidated and Emergency
Supplemental Appropriations Act, 1999 (Public Law 105-
277), is amended by adding at the end the following new
section:
``SEC. 2707. PROHIBITING PREMIUM DISCRIMINATION AGAINST GROUPS ON THE
BASIS OF PREDICTIVE GENETIC INFORMATION IN THE GROUP
MARKET.
``A group health plan, or a health insurance issuer offering group
health insurance coverage in connection with a group health plan shall
not adjust premium or contribution amounts for a group on the basis of
predictive genetic information concerning an individual in the group or
a family member of the individual (including information about a
request for or receipt of genetic services).''.
(C) Conforming amendment.--Section 2702(b) of the
Public Health Service Act (42 U.S.C. 300gg-1(b)) is
amended by adding at the end the following:
``(3) Reference to related provision.--For a provision
prohibiting the adjustment of premium or contribution amounts
for a group under a group health plan on the basis of
predictive genetic information (including information about a
request for or receipt of genetic services), see section
2707.''.
(D) Limitation on collection and disclosure of
predictive genetic 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) Collection of Predictive Genetic Information.--
``(1) Limitation on requesting or requiring predictive
genetic information.--Except as provided in paragraph (2), 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 predictive genetic information
concerning an individual or a family member of the individual
(including information about a request for or receipt of
genetic services).
``(2) Information needed for diagnosis, treatment, or
payment.--
``(A) In general.--Notwithstanding paragraph (1), a
group health plan, or a health insurance issuer
offering health insurance coverage in connection with a
group health plan, that provides health care items and
services to an individual or dependent may request (but
may not require) that such individual or dependent
disclose, or authorize the collection or disclosure of,
predictive genetic information for purposes of
diagnosis, treatment, or payment relating to the
provision of health care items and services to such
individual or dependent.
``(B) Notice of confidentiality practices and
description of safeguards.--As a part of a request
under subparagraph (A), the group health plan, or a
health insurance issuer offering health insurance
coverage in connection with a group health plan, shall
provide to the individual or dependent a description of
the procedures in place to safeguard the
confidentiality, as described in subsection (d), of
such predictive genetic information.
``(d) Confidentiality With Respect to Predictive Genetic
Information.--
``(1) Notice of confidentiality practices.--
``(A) Preparation of written notice.--A group
health plan, or a health insurance issuer offering
health insurance coverage in connection with a group
health plan, shall post or provide, in writing and in a
clear and conspicuous manner, notice of the plan or
issuer's confidentiality practices, that shall
include--
``(i) a description of an individual's
rights with respect to predictive genetic
information;
``(ii) the procedures established by the
plan or issuer for the exercise of the
individual's rights; and
``(iii) the right to obtain a copy of the
notice of the confidentiality practices
required under this subsection.
``(B) Model notice.--The Secretary, in consultation
with the National Committee on Vital and Health
Statistics and the National Association of Insurance
Commissioners, and after notice and opportunity for
public comment, shall develop and disseminate model
notices of confidentiality practices. Use of the model
notice shall serve as a defense against claims of
receiving inappropriate notice.
``(2) Establishment of safeguards.--A group health plan, or
a health insurance issuer offering health insurance coverage in
connection with a group health plan, shall establish and
maintain appropriate administrative, technical, and physical
safeguards to protect the confidentiality, security, accuracy,
and integrity of predictive genetic information created,
received, obtained, maintained, used, transmitted, or disposed
of by such plan or issuer.''.
(2) Definitions.--Section 2791(d) of the Public Health
Service Act (42 U.S.C. 300gg-91(d)) is amended by adding at the
end the following:
``(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 described in
subparagraph (A) or (B).
``(16) Genetic information.--The term `genetic information'
means information about genes, gene products, or inherited
characteristics that may derive from an individual or a family
member (including information about a request for or receipt of
genetic services).
``(17) Genetic services.--The term `genetic services' means
health services provided to obtain, assess, or interpret
genetic information for diagnostic and therapeutic purposes,
and for genetic education and counseling.
``(18) Predictive genetic information.--
``(A) In general.--The term `predictive genetic
information' means, in the absence of symptoms,
clinical signs, or a diagnosis of the condition related
to such information--
``(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) Exceptions.--The term `predictive genetic
information' shall not include--
``(i) information about the sex or age of
the individual;
``(ii) information derived from physical
tests, such as the chemical, blood, or urine
analyses of the individual including
cholesterol tests; and
``(iii) information about physical exams of
the individual.
``(19) Genetic test.--The term `genetic test' means the
analysis of human DNA, RNA, chromosomes, proteins, and certain
metabolites, including analysis of genotypes, mutations,
phenotypes, or karyotypes, for the purpose of predicting risk
of disease in asymptomatic or undiagnosed individuals.''.
(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.) (relating to other requirements), as amended by the
Omnibus Consolidated and Emergency Supplemental Appropriations Act,
1999 (Public Law 105-277) is amended--
(1) by redesignating such subpart as subpart 2; and
(2) by adding at the end the following:
``SEC. 2753. PROHIBITION OF HEALTH DISCRIMINATION ON THE BASIS OF
PREDICTIVE GENETIC INFORMATION.
``(a) Prohibition on Predictive Genetic Information as a Condition
of Eligibility.--A health insurance issuer offering health insurance
coverage in the individual market may not use predictive genetic
information as a condition of eligibility of an individual to enroll in
individual health insurance coverage (including information about a
request for or receipt of genetic services).
``(b) Prohibition on Predictive Genetic Information in Setting
Premium Rates.--A health insurance issuer offering health insurance
coverage in the individual market shall not adjust premium rates for
individuals on the basis of predictive genetic information concerning
such an enrollee or a family member of the enrollee (including
information about a request for or receipt of genetic services).
``(c) Collection of Predictive Genetic Information.--
``(1) Limitation on requesting or requiring predictive
genetic information.--Except as provided in paragraph (2), a
health insurance issuer offering health insurance coverage in
the individual market shall not request or require predictive
genetic information concerning an individual or a family member
of the individual (including information about a request for or
receipt of genetic services).
``(2) Information needed for diagnosis, treatment, or
payment.--
``(A) In general.--Notwithstanding paragraph (1), a
health insurance issuer offering health insurance
coverage in the individual market that provides health
care items and services to an individual or dependent
may request (but may not require) that such individual
or dependent disclose, or authorize the collection or
disclosure of, predictive genetic information for
purposes of diagnosis, treatment, or payment relating
to the provision of health care items and services to
such individual or dependent.
``(B) Notice of confidentiality practices and
description of safeguards.--As a part of a request
under subparagraph (A), the health insurance issuer
offering health insurance coverage in the individual
market shall provide to the individual or dependent a
description of the procedures in place to safeguard the
confidentiality, as described in subsection (d), of
such predictive genetic information.
``(d) Confidentiality With Respect to Predictive Genetic
Information.--
``(1) Notice of confidentiality practices.--
``(A) Preparation of written notice.--A health
insurance issuer offering health insurance coverage in
the individual market shall post or provide, in writing
and in a clear and conspicuous manner, notice of the
issuer's confidentiality practices, that shall
include--
``(i) a description of an individual's
rights with respect to predictive genetic
information;
``(ii) the procedures established by the
issuer for the exercise of the individual's
rights; and
``(iii) the right to obtain a copy of the
notice of the confidentiality practices
required under this subsection.
``(B) Model notice.--The Secretary, in consultation
with the National Committee on Vital and Health
Statistics and the National Association of Insurance
Commissioners, and after notice and opportunity for
public comment, shall develop and disseminate model
notices of confidentiality practices. Use of the model
notice shall serve as a defense against claims of
receiving inappropriate notice.
``(2) Establishment of safeguards.--A health insurance
issuer offering health insurance coverage in the individual
market shall establish and maintain appropriate administrative,
technical, and physical safeguards to protect the
confidentiality, security, accuracy, and integrity of
predictive genetic information created, received, obtained,
maintained, used, transmitted, or disposed of by such
issuer.''.
(c) Effective Date.--The amendments made by this section shall
apply with respect to--
(1) group health plans, and health insurance coverage
offered in connection with group health plans, for plan years
beginning after 1 year after the date of enactment of this Act;
and
(2) health insurance coverage offered, sold, issued,
renewed, in effect, or operated in the individual market after
1 year after the date of enactment of this Act.
SEC. 4. AMENDMENTS TO THE INTERNAL REVENUE CODE OF 1986.
(a) Prohibition of Health Discrimination on the Basis of Genetic
Information or Genetic Services.--
(1) No enrollment restriction for genetic services.--
Section 9802(a)(1)(F) of the Internal Revenue Code of 1986 is
amended by inserting before the period the following:
``(including information about a request for or receipt of
genetic services)''.
(2) No discrimination in group premiums based on predictive
genetic information.--
(A) In general.--Subchapter B of chapter 100 of the
Internal Revenue Code of 1986 is amended by adding at
the end the following:
``SEC. 9813. PROHIBITING PREMIUM DISCRIMINATION AGAINST GROUPS ON THE
BASIS OF PREDICTIVE GENETIC INFORMATION.
``A group health plan shall not adjust premium or contribution
amounts for a group on the basis of predictive genetic information
concerning an individual in the group or a family member of the
individual (including information about a request for or receipt of
genetic services).''.
(B) Conforming amendment.--Section 9802(b) of the
Internal Revenue Code of 1986 is amended by adding at
the end the following:
``(3) Reference to related provision.--For a provision
prohibiting the adjustment of premium or contribution amounts
for a group under a group health plan on the basis of
predictive genetic information (including information about a
request for or the receipt of genetic services), see section
9813.''.
(C) Amendment to table of sections.--The table of
sections for subchapter B of chapter 100 of the
Internal Revenue Code of 1986 is amended by adding at
the end the following:
``Sec. 9813. Prohibiting premium discrimination against groups on the
basis of predictive genetic information.''.
(b) Limitation on Collection of Predictive Genetic Information.--
Section 9802 of the Internal Revenue Code of 1986 is amended by adding
at the end the following:
``(d) Collection of Predictive Genetic Information.--
``(1) Limitation on requesting or requiring predictive
genetic information.--Except as provided in paragraph (2), a
group health plan shall not request or require predictive
genetic information concerning an individual or a family member
of the individual (including information about a request for or
receipt of genetic services).
``(2) Information needed for diagnosis, treatment, or
payment.--
``(A) In general.--Notwithstanding paragraph (1), a
group health plan that provides health care items and
services to an individual or dependent may request (but
may not require) that such individual or dependent
disclose, or authorize the collection or disclosure of,
predictive genetic information for purposes of
diagnosis, treatment, or payment relating to the
provision of health care items and services to such
individual or dependent.
``(B) Notice of confidentiality practices;
description of safeguards.--As a part of a request
under subparagraph (A), the group health plan shall
provide to the individual or dependent a description of
the procedures in place to safeguard the
confidentiality, as described in subsection (e), of
such predictive genetic information.
``(e) Confidentiality With Respect to Predictive Genetic
Information.--
``(1) Notice of confidentiality practices.--
``(A) Preparation of written notice.--A group
health plan shall post or provide, in writing and in a
clear and conspicuous manner, notice of the plan's
confidentiality practices, that shall include--
``(i) a description of an individual's
rights with respect to predictive genetic
information;
``(ii) the procedures established by the
plan for the exercise of the individual's
rights; and
``(iii) the right to obtain a copy of the
notice of the confidentiality practices
required under this subsection.
``(B) Model notice.--The Secretary, in consultation
with the National Committee on Vital and Health
Statistics and the National Association of Insurance
Commissioners, and after notice and opportunity for
public comment, shall develop and disseminate model
notices of confidentiality practices. Use of the model
notice shall serve as a defense against claims of
receiving inappropriate notice.
``(2) Establishment of safeguards.--A group health plan
shall establish and maintain appropriate administrative,
technical, and physical safeguards to protect the
confidentiality, security, accuracy, and integrity of
predictive genetic information created, received, obtained,
maintained, used, transmitted, or disposed of by such plan.''.
(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 described in
subparagraph (A) or (B).
``(7) Genetic information.--The term `genetic information'
means information about genes, gene products, or inherited
characteristics that may derive from an individual or a family
member (including information about a request for or receipt of
genetic services).
``(8) Genetic services.--The term `genetic services' means
health services provided to obtain, assess, or interpret
genetic information for diagnostic and therapeutic purposes,
and for genetic education and counseling.
``(9) Predictive genetic information.--
``(A) In general.--The term `predictive genetic
information' means, in the absence of symptoms,
clinical signs, or a diagnosis of the condition related
to such information--
``(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) Exceptions.--The term `predictive genetic
information' shall not include--
``(i) information about the sex or age of
the individual;
``(ii) information derived from physical
tests, such as the chemical, blood, or urine
analyses of the individual including
cholesterol tests; and
``(iii) information about physical exams of
the individual.
``(10) Genetic test.--The term `genetic test' means the
analysis of human DNA, RNA, chromosomes, proteins, and certain
metabolites, including analysis of genotypes, mutations,
phenotypes, or karyotypes, for the purpose of predicting risk
of disease in asymptomatic or undiagnosed individuals.''.
(d) Effective Date.--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 1 year
after the date of the enactment of this Act.
<all>