[Congressional Record Volume 149, Number 138 (Thursday, October 2, 2003)]
[Senate]
[Pages S12403-S12417]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]
GENETIC INFORMATION NONDISCRIMINATION ACT OF 2003
Mr. FRIST. Mr. President, I ask unanimous consent that the Senate
proceed to the immediate consideration of Calendar No. 247, S. 1053,
the Genetic Information Nondiscrimination Act; that the committee-
reported substitute amendment be agreed to and treated as original text
for purposes of further amendment, and the Snowe substitute, which is
at the desk, be agreed to; further, that there be 30 minutes of debate
equally divided in the usual form under the control of the chairman and
ranking members of the HELP Committee or their designees; that no other
amendments be in order; further, that upon the use or yielding back of
time the bill be read a third time; that at 2:15 p.m. on Tuesday,
October 14, the Senate resume consideration of S. 1053 and there be 15
minutes of debate equally divided, followed by a vote on passage of the
bill, all without intervening action or debate.
[[Page S12404]]
The ACTING PRESIDENT pro tempore. Is there objection?
Mr. REID. No objection.
The ACTING PRESIDENT pro tempore. Without objection, it is so
ordered.
The clerk will report the bill by title.
The assistant legislative clerk read as follows:
A bill (S. 1053) to prohibit discrimination on the basis of
genetic information with respect to health insurance and
employment.
There being no objection, the Senate proceeded to consider the bill
which had been reported from the Committee on Health, Education, Labor,
and Pensions, with an amendment to strike all after the enacting clause
and inserting in lieu thereof the following:
S. 1053
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 Act of 2003''.
[TITLE I--GENETIC NONDISCRIMINATION IN HEALTH INSURANCE
[SEC. 101. 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 genetic
information.--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) No discrimination in group premiums based on genetic
information.--For purposes of this section, 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 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) Limitations on Genetic Testing and the Collection of
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 requiring 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 health care services with
respect to an individual or who is acting on behalf of a
group health plan or a health insurance issuer, to request
that such individual or a 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
genetic test.
[``(d) Compliance With Certain Confidentiality Standards
With Respect to Genetic Information.--With respect to the use
or disclosure of genetic information by a group health plan,
or a health insurance issuer offering health insurance
coverage in connection with a group health plan, such
information shall be deemed to be protected health
information for purposes of, and shall be subject to, the
standards promulgated by the Secretary of Health and Human
Services under--
[``(1) part C of title XI of the Social Security Act (42
U.S.C. 1320d et seq.); or
[``(2) section 264(c) of the Health Insurance Portability
and Accountability Act of 1996 (Public Law 104-191; 110 Stat.
2033).
[``(e) Collection of Genetic Information.--
[``(1) Limitation on requesting or requiring 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 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 treatment, payment, and
health care operations.--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 may request genetic information concerning such
individual or dependent for purposes of treatment, payment,
or health care operations in accordance with the standards
for protected health information described in subsection (d)
to the extent that the use of such information is otherwise
consistent with this section.
[``(3) Failure to provide necessary information.--If an
individual or dependent refuses to provide the information
requested under paragraph (2), and such information is for
treatment, payment, or health care operations relating to the
individual, the group health plan or health insurance issuer
requesting such information shall not be required to provide
coverage for the items, services, or treatments with respect
to which the requested information relates in any action
under part 5.''.
[(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.--
[``(A) In general.--Except as provided in subparagraph (B),
the term `genetic information' means information--
[``(i) concerning--
[``(I) the genetic tests of an individual;
[``(II) the genetic tests of family members of the
individual; or
[``(III) the occurrence of a disease or disorder in family
members of the individual; and
[``(ii) that is used to predict risk of disease in
asymptomatic or undiagnosed individuals.
[``(B) Exceptions.--The term `genetic information' shall
not include--
[``(i) information about the sex or age of the individual;
[``(ii) information derived from clinical and laboratory
tests, such as the chemical, blood, or urine analyses of the
individual including cholesterol tests, used to determine
health status or detect illness or diagnose disease; and
[``(iii) information about physical exams of the
individual.
[``(7) Genetic services.--The term `genetic services' means
health services provided for genetic education and
counseling.
[``(8) Genetic test.--The term `genetic test' means the
analysis of human DNA, RNA, chromosomes, proteins, and
metabolites, that detect genotypes, mutations, or chromosomal
changes. Such term does not include information described in
paragraph (6)(B).''.
[(d) Regulations and Effective Date.--
[(1) Regulations.--Not later than 1 year after the date of
enactment of this title, the Secretary of Labor shall issue
final regulations in an accessible format to carry out the
amendments made by this section.
[(2) Effective date.--The amendments made by this section
shall apply with respect to group health plans for plan years
beginning after the date that is 18 months after the date of
enactment of this title.
[SEC. 102. 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 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 before the
period the following: ``(including information about a
request for or receipt of genetic services)''.
[(B) No discrimination in group premiums based on genetic
information.--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) No discrimination in group premiums based on genetic
information.--For purposes of this section, 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 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).''.
[(2) Limitations on genetic testing and the collection of
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) Genetic Testing.--
[``(1) Limitation on requesting or requiring 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 health care services with
respect to an individual or who is acting on behalf of a
group health plan or a health insurance issuer, to request
that such individual or a 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
genetic test.
[``(d) Compliance With Certain Confidentiality Standards
With Respect to Genetic Information.--With respect to the use
or disclosure of genetic information by a group health plan,
or a health insurance issuer offering health insurance
coverage in connection with a group health plan, such
[[Page S12405]]
information shall be deemed to be protected health
information for purposes of, and shall be subject to, the
standards promulgated by the Secretary of Health and Human
Services under--
[``(1) part C of title XI of the Social Security Act (42
U.S.C. 1320d et seq.); or
[``(2) section 264(c) of the Health Insurance Portability
and Accountability Act of 1996 (Public Law 104-191; 110 Stat.
2033).
[``(e) Collection of Genetic Information.--
[``(1) Limitation on requesting or requiring 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 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 treatment, payment, and
health care operations.--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 may request genetic information concerning such
individual or dependent for purposes of treatment, payment,
or health care operations in accordance with the standards
for protected health information described in subsection (d)
to the extent that the use of such information is otherwise
consistent with this section.
[``(3) Failure to provide necessary information.--If an
individual or dependent refuses to provide the information
requested under paragraph (2), and such information is for
treatment, payment, or health care operations relating to the
individual, the group health plan or health insurance issuer
requesting such information shall not be required to provide
coverage for the items, services, or treatments with respect
to which the requested information relates.''.
[(3) 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.--
[``(A) In general.--Except as provided in subparagraph (B),
the term `genetic information' means information--
[``(i) concerning--
[``(I) the genetic tests of an individual;
[``(II) the genetic tests of family members of the
individual; or
[``(III) the occurrence of a disease or disorder in family
members of the individual; and
[``(ii) that is used to predict risk of disease in
asymptomatic or undiagnosed individuals.
[``(B) Exceptions.--The term `genetic information' shall
not include--
[``(i) information about the sex or age of the individual;
[``(ii) information derived from clinical and laboratory
tests, such as the chemical, blood, or urine analyses of the
individual including cholesterol tests, used to determine
health status or detect illness or diagnose disease; and
[``(iii) information about physical exams of the
individual.
[``(17) Genetic services.--The term `genetic services'
means health services provided for genetic education and
counseling.
[``(18) Genetic test.--The term `genetic test' means the
analysis of human DNA, RNA, chromosomes, proteins, and
metabolites, that detect genotypes, mutations, or chromosomal
changes. Such term does not include information described in
paragraph (16)(B).''.
[(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) 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 GENETIC INFORMATION.
[``(a) Prohibition on Genetic Information as a Condition of
Eligibility.--A health insurance issuer offering health
insurance coverage in the individual market may not use
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 Genetic Information in Setting
Premium Rates.--For purposes of this section, a health
insurance issuer offering health insurance coverage in the
individual market shall not adjust premium or contribution
amounts for an individual on the basis of genetic information
concerning the individual or a family member of the
individual (including information about a request for or
receipt of genetic services).
[``(c) Genetic Testing.--
[``(1) Limitation on requesting or requiring 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 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 health care services with
respect to an individual or who is acting on behalf of a
health insurance issuer, to request that such individual or a
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 genetic test.
[``(d) Compliance With Certain Confidentiality Standards
With Respect to Genetic Information.--With respect to the use
or disclosure of genetic information by a health insurance
issuer offering health insurance coverage in the individual
market, such information shall be deemed to be protected
health information for purposes of, and shall be subject to,
the standards promulgated by the Secretary of Health and
Human Services under--
[``(1) part C of title XI of the Social Security Act (42
U.S.C. 1320d et seq.); or
[``(2) section 264(c) of the Health Insurance Portability
and Accountability Act of 1996 (Public Law 104-191; 110 Stat.
2033).
[``(e) Collection of Genetic Information.--
[``(1) Limitation on requesting or requiring 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 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 treatment, payment, and
health care operations.--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 may request genetic information
concerning such individual or dependent for purposes of
treatment, payment, or health care operations in accordance
with the standards for protected health information described
in subsection (d) to the extent that the use of such
information is otherwise consistent with this section.
[``(3) Failure to provide necessary information.--If an
individual or dependent refuses to provide the information
requested under paragraph (2), and such information is for
treatment, payment, or health care operations relating to the
individual, the health insurance issuer requesting such
information shall not be required to provide coverage for the
items, services, or treatments with respect to which the
requested information relates.''.
[(c) Regulations and Effective Date.--
[(1) Regulations.--Not later than 1 year after the date of
enactment of this title, the Secretary of Labor and the
Secretary of Health and Human Services (as the case may be)
shall issue final regulations in an accessible format to
carry out the amendments made by this section.
[(2) Effective date.--The amendments made by this section
shall apply--
[(A) with respect to group health plans, and health
insurance coverage offered in connection with group health
plans, for plan years beginning after the date that is 18
months after the date of enactment of this title; and
[(B) with respect to health insurance coverage offered,
sold, issued, renewed, in effect, or operated in the
individual market after the date that is 18 months after the
date of enactment of this title.
[SEC. 103. 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 genetic
information.--Section 9802(b) of the Internal Revenue Code of
1986 is amended by adding at the end the following:
[``(3) No discrimination in group premiums based on genetic
information.--For purposes of this section, a group health
plan shall not adjust premium or contribution amounts for a
group on the basis of 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) Limitations on Genetic Testing and the Collection of
Genetic Information.--Section 9802 of the Internal Revenue
Code of 1986 is amended by adding at the end the following:
[``(d) Genetic Testing and Genetic Services.--
[``(1) Limitation on requesting or requiring genetic
testing.--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 health care services with
respect to an individual or who is acting on behalf of a
group health plan, to request that such individual or a
family member of such individual undergo a genetic test. Such
a health
[[Page S12406]]
care professional shall not require that such individual or
family member undergo a genetic test.
[``(e) Compliance With Certain Confidentiality Standards
With Respect to Genetic Information.--With respect to the use
or disclosure of genetic information by a group health plan,
such information shall be deemed to be protected health
information for purposes of, and shall be subject to, the
standards promulgated by the Secretary of Health and Human
Services under--
[``(1) part C of title XI of the Social Security Act (42
U.S.C. 1320d et seq.); or
[``(2) section 264(c) of the Health Insurance Portability
and Accountability Act of 1996 (Public Law 104-191; 110 Stat.
2033).
[``(f) Collection of Genetic Information.--
[``(1) Limitation on requesting or requiring genetic
information.--Except as provided in paragraph (2), a group
health plan shall not request or require 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 treatment, payment, and
health care operations.--Notwithstanding paragraph (1), a
group health plan that provides health care items and
services to an individual may request genetic information
concerning such individual or dependent for purposes of
treatment, payment, or health care operations in accordance
with the standards for protected health information described
in subsection (e) to the extent that the use of such
information is otherwise consistent with this section.
[``(3) Failure to provide necessary information.--If an
individual or dependent refuses to provide the information
requested under paragraph (2), and such information is for
treatment, payment, or health care operations relating to the
individual, the group health plan requesting such information
shall not be required to provide coverage for the items,
services, or treatments with respect to which the requested
information relates.''.
[(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.--
[``(A) In general.--Except as provided in subparagraph (B),
the term `genetic information' means information--
[``(i) concerning--
[``(I) the genetic tests of an individual;
[``(II) the genetic tests of family members of the
individual; or
[``(III) the occurrence of a disease or disorder in family
members of the individual; and
[``(ii) that is used to predict risk of disease in
asymptomatic or undiagnosed individuals.
[``(B) Exceptions.--The term `genetic information' shall
not include--
[``(i) information about the sex or age of the individual;
[``(ii) information derived from clinical and laboratory
tests, such as the chemical, blood, or urine analyses of the
individual including cholesterol tests, used to determine
health status or detect illness or diagnose disease; and
[``(iii) information about physical exams of the
individual.
[``(8) Genetic services.--The term `genetic services' means
health services provided for genetic education and
counseling.
[``(9) Genetic test.--The term `genetic test' means the
analysis of human DNA, RNA, chromosomes, proteins, and
metabolites, that detect genotypes, mutations, or chromosomal
changes. Such term does not include information described in
paragraph (7)(B).''.
[(d) Regulations and Effective Date.--
[(1) Regulations.--Not later than 1 year after the date of
enactment of this title, the Secretary of the Treasury shall
issue final regulations in an accessible format to carry out
the amendments made by this section.
[(2) Effective date.--The amendments made by this section
shall apply with respect to group health plans for plan years
beginning after the date that is 18 months after the date of
enactment of this title.
[SEC. 104. ASSURING COORDINATION.
[The Secretary of the Treasury, the Secretary of Health and
Human Services, and the Secretary of Labor shall ensure,
through the execution of an interagency memorandum of
understanding among such Secretaries, that--
[(1) regulations, rulings, and interpretations issued by
such Secretaries relating to the same matter over which two
or more such Secretaries have responsibility under this title
(and the amendments made by this title) are administered so
as to have the same effect at all times; and
[(2) coordination of policies relating to enforcing the
same requirements through such Secretaries in order to have a
coordinated enforcement strategy that avoids duplication of
enforcement efforts and assigns priorities in enforcement.
[TITLE II--PROHIBITING EMPLOYMENT DISCRIMINATION ON THE BASIS OF
GENETIC INFORMATION
[SEC. 201. DEFINITIONS.
[In this title:
[(1) Commission.--The term ``Commission'' means the Equal
Employment Opportunity Commission as created by section 705
of the Civil Rights Act of 1964 (42 U.S.C. 2000e-4).
[(2) Employee; employer; employment agency; labor
organization; and member.--The terms--
[(A) ``employee'', ``employer'', ``employment agency'', and
``labor organization'' have the meanings given such terms in
section 701 of the Civil Rights Act of 1964 (42 U.S.C.
2000e); and
[(B) ``employee'' and ``member'', as used with respect to a
labor organization, include an applicant for employment and
an applicant for membership in a labor organization,
respectively.
[(3) 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).
[(4) Genetic information.--
[(A) In general.--Except as provided in subparagraph (B),
the term ``genetic information'' means information--
[(i) concerning--
[(I) the genetic tests of an individual;
[(II) the genetic tests of family members of the
individual; or
[(III) the occurrence of a disease or disorder in family
members of the individual; and
[(ii) that is used to predict risk of disease in
asymptomatic or undiagnosed individuals.
[(B) Exceptions.--The term ``genetic information'' shall
not include--
[(i) information about the sex or age of the individual;
[(ii) information derived from clinical and laboratory
tests, such as the chemical, blood, or urine analyses of the
individual including cholesterol tests, used to determine
health status or detect illness or diagnose disease; and
[(iii) information about physical exams of the individual.
[(5) Genetic monitoring.--The term ``genetic monitoring''
means the periodic examination of employees 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
effects of or control adverse environmental exposures in the
workplace.
[(6) Genetic services.--The term ``genetic services'' means
health services provided for genetic education and
counseling.
[(7) Genetic test.--The term ``genetic test'' means the
analysis of human DNA, RNA, chromosomes, proteins, and
metabolites, that detect genotypes, mutations, or chromosomal
changes. Such term does not include information described in
paragraph (4)(B).
[SEC. 202. EMPLOYER PRACTICES.
[(a) Use of Genetic Information.--It shall be an unlawful
employment 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 individual,
because of 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); or
[(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 opportunities or otherwise adversely
affect the status of the individual as an employee, because
of 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).
[(b) Limitation on Collection of Genetic Information.--It
shall be an unlawful employment practice for an employer to
intentionally request, require, or purchase genetic
information with respect to an employee or a family member of
the employee (or information about a request for the receipt
of genetic services by such employee or a family of such
employee) except--
[(1) where the information involved is to be used for
genetic monitoring of the biological effects of toxic
substances in the workplace, but only if--
[(A) the employer provides written notice of the genetic
monitoring to the employee;
[(B)(i) the employee provides prior, knowing, voluntary,
and written authorization; or
[(ii) the genetic monitoring is required by Federal, State,
or local law;
[(C) the employee is informed of individual monitoring
results;
[(D) the monitoring conforms to any Federal or State
genetic monitoring regulations, including any such
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
[(E) the employer, excluding any licensed or certified
health care professional that is involved in the genetic
monitoring program,
[[Page S12407]]
receives the results of the monitoring only in aggregate
terms that do not disclose the identity of specific
employees;
[(2) where--
[(A) health or genetic services are offered by the
employer;
[(B) the employee provides prior, knowing, voluntary, and
written authorization; and
[(C) only the employee (or family member if the family
member is receiving genetic services) and the licensed or
certified health care professionals involved in providing
such services receive individually identifiable information
concerning the results of such services; or
[(3) where the request or requirement is necessary to
comply with Federal, State, or local law.
[(c) Limitation.--In the case of genetic information to
which paragraph (1), (2), or (3) of subsection (b) applies,
such information may not be used in violation of paragraph
(1) or (2) of subsection (a).
[(d) Exception.--
[(1) In general.--An employer shall not be considered to
engage in an employment practice that is unlawful under this
title because of its disparate impact, on the basis that the
employer applies a qualification standard, test, or other
selection criterion that screens out or tends to screen out,
or otherwise denies a job benefit to, an individual, if the
standard, test, or other selection criterion is shown to be
job-related with respect to the employment position involved
and consistent with business necessity.
[(2) Qualification standard.--In this subsection, the term
``qualification standard'' may include a requirement that an
individual shall not pose a direct threat to the health or
safety of other individuals in the workplace.
[(e) Rule of Construction Relating to Group Health Plans.--
Nothing in this section shall be construed to prohibit a
group health plan (as such term is defined in section 733(a)
of the Employee Retirement Income Security Act of 1974 (29
U.S.C. 1191b(a))), or a health insurance issuer offering
group health insurance coverage in connection with a group
health plan, from making a request described in subsection
(b) if such request is consistent with the provisions of part
7 of subtitle B of title I of the Employee Retirement Income
Security Act of 1974 (29 U.S.C. 1181 et seq.), title XXVII of
the Public Health Service (42 U.S.C. 300gg et seq.), and
chapter 100 of the Internal Revenue Code of 1986.
[SEC. 203. EMPLOYMENT AGENCY PRACTICES.
[(a) Use of Genetic Information.--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 because of
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); or
[(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 otherwise adversely affect the
status of the individual as an employee, because of 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).
[(b) Limitation on Collection of Genetic Information.--It
shall be an unlawful employment practice for an employment
agency--
[(1) to intentionally request, require, or purchase genetic
information with respect to an employee or family member of
the employee (or information about a request for or the
receipt of genetic services by such employee or family member
of such employee), except that the provisions of section
202(b) shall apply with respect to employment agencies and
employees (and the family members of the employees) under
this paragraph in the same manner and to the same extent as
such provisions apply to employers and employees (and the
family members of the employees) under section 202(b); or
[(2) to cause or attempt to cause an employer to
discriminate against an individual in violation of this
title.
[(c) Limitation and Exception.--Subsections (c) and (d) of
section 202 shall apply with respect to employment agencies
and employees (and the family members of the employees) under
this section in the same manner and to the same extent as
such provisions apply to employers and employees (and the
family members of the employees) under section 202.
[SEC. 204. LABOR ORGANIZATION PRACTICES.
[(a) Use of Genetic Information.--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 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); or
[(2) to limit, segregate, or classify the members of the
organization, 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 otherwise
adversely affect the status of the individual as an employee,
because of 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).
[(b) Limitation on Collection of Genetic Information.--It
shall be an unlawful employment practice for a labor
organization--
[(1) to intentionally request, require, or purchase genetic
information with respect to an individual who is a member of
a labor organization or a family member of the individual (or
information about a request for or the receipt of genetic
services by such individual or family member of such
individual) except that the provisions of section 202(b)
shall apply with respect to labor organizations and such
individuals (and their family members) under this paragraph
in the same manner and to the same extent as such provisions
apply to employers and employees (and the family members of
the employees) under section 202(b); or
[(2) to cause or attempt to cause an employer to
discriminate against an individual in violation of this
title.
[(c) Limitation and Exception.--Subsections (c) and (d) of
section 202 shall apply with respect to labor organizations
and individuals who are members of labor organizations (and
the family members of the individuals) under this section in
the same manner and to the same extent as such provisions
apply to employers and employees (and the family members of
the employees) under section 202.
[SEC. 205. TRAINING PROGRAMS.
[(a) Use of Genetic Information.--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 because of
genetic information with respect to the individual (or
information about a request for or the receipt of genetic
services by such individual or a family member of such
individual) in admission to, or employment in, any program
established to provide apprenticeship or other training or
retraining; or
[(2) to limit, segregate, or classify the applicants for or
participants in such apprenticeship or other training or
retraining, 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 otherwise
adversely affect the status of the individual as an employee,
because of genetic information with respect to the individual
(or information about a request for or receipt of genetic
services by such individual or family member of such
individual).
[(b) Limitation on Collection of Genetic Information.--It
shall be an unlawful employment practice for an employer,
labor organization, or joint labor-management committee
described in subsection (a)--
[(1) to intentionally request, require, or purchase genetic
information with respect to an individual who is an applicant
for or a participant in such apprenticeship or other training
or retraining (or information about a request for or the
receipt of genetic services by such individual or family
member of such individual) except that the provisions of
section 202(b) shall apply with respect to such employers,
labor organizations, and joint labor-management committees
and to such individuals (and their family members) under this
paragraph in the same manner and to the same extent as such
provisions apply to employers and employees (and their family
members) under section 202(b); or
[(2) to cause or attempt to cause an employer to
discriminate against an applicant for or a participant in
such apprenticeship or other training or retraining in
violation of this title.
[(c) Limitation and Exception.--Subsections (c) and (d) of
section 202 shall apply with respect to employers, labor
organizations, and joint labor-management committees
described in subsection (a) and to individuals who are
applicants for or participants in apprenticeship or other
training or retraining (and the family members of the
individuals) under this section in the same manner and to the
same extent as the provisions apply to employers and to
employees (and the family members of the employees) under
section 202.
[SEC. 206. CONFIDENTIALITY OF GENETIC INFORMATION.
[(a) Treatment of Information as Part of Confidential
Medical Record.--
[(1) In general.--If an employer, employment agency, labor
organization, or joint labor-management committee possesses
genetic information about an employee or member (or
information about a request for or receipt of genetic
services by such employee or member or family member of such
employee or member), such information shall be treated and
maintained as part of the employee's or member's confidential
medical records.
[(2) Limitation on disclosure.--An employer, employment
agency, labor organization, or joint labor-management
committee shall not disclose genetic information concerning
an employee or member (or information about a request for or
receipt of genetic services by such employee or member or
family member of such employee or member) except--
[(A) to the employee (or family member if the family member
is receiving the genetic services) or member at the request
of the employee or member;
[[Page S12408]]
[(B) to an occupational or other health researcher if the
research is conducted in compliance with the regulations and
protections provided for under part 46 of title 45, Code of
Federal Regulations (or any corresponding similar regulation
or rule);
[(C) under legal compulsion of a Federal or State 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 individual with adequate
notice to challenge the court order;
[(D) to government officials who are investigating
compliance with this title if the information is relevant to
the investigation;
[(E) to the extent that such disclosure is necessary to
comply with Federal, State, or local law; or
[(F) as otherwise provided for in this title.
[(b) Rule of Construction Relating to Group Health Plans.--
Nothing in this section shall be construed to prohibit a
group health plan (as such term is defined in section 733(a)
of the Employee Retirement Income Security Act of 1974 (29
U.S.C. 1191b(a))), or a health insurance issuer offering
group health insurance coverage in connection with a group
health plan, from using or disclosing information described
in subsection (a) if such use of disclosure is consistent
with the provisions of part 7 of subtitle B of title I of the
Employee Retirement Income Security Act of 1974 (29 U.S.C.
1181 et seq.), title XXVII of the Public Health Service (42
U.S.C. 300gg et seq.), and chapter 100 of the Internal
Revenue Code of 1986.
[SEC. 207. ENFORCEMENT.
[The powers, remedies, and procedures set forth in sections
705, 706, 707, 709, and 710 of the Civil Rights Act of 1964
(42 U.S.C. 2000e-4, 2000e-5, 2000e-6, 2000e-8, and 2000e-9)
shall be the powers, remedies, and procedures that this title
provides to the Commission, to the Attorney General, or to
any person alleging an unlawful employment practice in
violation of section 202 (other than subsection (e) of such
section), 203, 204, 205, or 206(a) or the regulations
promulgated under section 210, concerning employment.
[SEC. 208. AMENDMENT TO THE REVISED STATUTES.
[(a) Right of Recovery.--Section 1977A(a) of the Revised
Statutes (42 U.S.C. 1981a(a)) is amended by adding at the end
the following:
[``(4) Genetic information.--In an action brought by a
complaining party under the powers, remedies, and procedures
set forth in section 706 of the Civil Rights Act of 1964 (42
U.S.C. 2000e-5), as authorized under section 207 of the
Genetic Information Nondiscrimination Act of 2003, against a
respondent who is engaging (or has engaged) in an intentional
unlawful employment practice prohibited by section 202 (other
than subsection (e) of such section), 203, 204, 205 or 206(a)
of such Genetic Information Nondiscrimination Act of 2003
against an individual (other than an action involving an
employment practice that is allegedly unlawful because of its
disparate impact), the complaining party may recover
compensatory and punitive damages as permitted under
subsection (b), in addition to any relief otherwise provided
for under section 706(g) of the Civil Rights Act of 1964 (42
U.S.C. 2000e-5(g)), from the respondent.''.
[(b) Conforming Amendments.--Section 1977A(d) of the
Revised Statutes (42 U.S.C. 1981a(d)) is amended--
[(1) in paragraph (1)--
[(A) in subparagraph (A), by striking ``or'' at the end;
[(B) in subparagraph (B), by striking the period and
inserting ``; or''; and
[(C) by adding at the end the following:
[``(C) in the case of a person seeking to bring an action
under subsection (a)(4) ,the Equal Employment Opportunity
Commission, the Attorney General, or a person who may bring
an action or proceeding under title II of the Genetic
Information Nondiscrimination Act of 2003.''; and
[(2) in paragraph (2), by striking ``or the discrimination
or the violation described in paragraph (2),'' and inserting
``the discrimination or the violation described in paragraph
(2), or the intentional unlawful employment practice
described in paragraph (4),''.
[SEC. 209. CONSTRUCTION.
[Nothing in this title shall be construed to--
[(1) limit the rights or protections of an individual 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 (42 U.S.C. 12112), or under the
Rehabilitation Act of 1973 (29 U.S.C. 701 et seq.), except
that an individual may not bring an action against an
employer, employment agency, labor organization, or joint
labor-management committee pursuant to this title and also
pursuant to the Americans with Disabilities Act of 1990 or
the Rehabilitation Act of 1973, if the actions are predicated
on the same facts or a common occurrence;
[(2) limit the rights or protections of an individual to
bring an action under this title against an employer,
employment agency, labor organization, or joint labor-
management committee for a violation of this title, except
that an individual may not bring an action against such an
employer, employment agency, labor organization, or joint
labor-management committee, with respect to a group health
plan or a health insurance issuer offering health insurance
coverage in connection with a group health plan, under this
title if the action is based on a violation of a provision of
the amendments made by title I;
[(3) limit the rights or protections of an individual under
any other Federal or State statute that provides equal or
greater protection to an individual than the rights or
protections provided for under this title;
[(4) apply to the Armed Forces Repository of Specimen
Samples for the Identification of Remains;
[(5) limit the authority of a Federal department or agency
to conduct or sponsor occupational or other health research
that is conducted in compliance with the regulations
contained in part 46 of title 45, Code of Federal Regulations
(or any corresponding or similar regulation or rule); and
[(6) limit the statutory or regulatory authority of the
Occupational Safety and Health Administration or the Mine
Safety and Health Administration to promulgate or enforce
workplace safety and health laws and regulations.
[SEC. 210. REGULATIONS.
[Not later than 1 year after the date of enactment of this
title, the Commission shall issue final regulations in an
accessible format to carry out this title.
[SEC. 211. SEVERABILITY.
[If any provision of this title, an amendment made by this
title, or the application of such provision or amendment to
any person or circumstance is held to be unconstitutional,
the remainder of this title, the amendments made by this
title, and the application of such provisions to any person
or circumstance shall not be affected thereby.
[SEC. 212. AUTHORIZATION OF APPROPRIATIONS.
[There are authorized to be appropriated such sums as may
be necessary to carry out this title.
[SEC. 213. EFFECTIVE DATE.
[(a) In General.--This title takes effect on the date that
is 18 months after the date of enactment of this Act.
[(b) Enforcement.--Notwithstanding subsection (a), no
enforcement action shall be commenced under section 207 until
the date on which the Commission issues final regulations
under section 210.
SECTION 1. SHORT TITLE.
This Act may be cited as the ``Genetic Information
Nondiscrimination Act of 2003''.
TITLE I--GENETIC NONDISCRIMINATION IN HEALTH INSURANCE
SEC. 101. 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 by an individual or family member of such
individual)''.
(2) No discrimination in group premiums based on genetic
information.--Section 702(b) of the Employee Retirement
Income Security Act of 1974 (29 U.S.C. 1182(b)) is amended--
(A) in paragraph (2)(A), by inserting before the semicolon
the following: ``except as provided in paragraph (3)''; and
(B) by adding at the end the following:
``(3) No discrimination in group premiums based on genetic
information.--For purposes of this section, 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 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 by an individual or family member of such
individual).''.
(b) Limitations on Genetic Testing.--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 requiring 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--
``(A) limit the authority of a health care professional who
is providing health care services with respect to an
individual to request that such individual or a family member
of such individual undergo a genetic test;
``(B) limit the authority of a health care professional who
is employed by or affiliated with a group health plan or a
health insurance issuer and who is providing health care
services to an individual as part of a bona fide wellness
program to notify such individual of the availability of a
genetic test or to provide information to such individual
regarding such genetic test; or
``(C) authorize or permit a health care professional to
require that an individual undergo a genetic test.
``(d) Application to All Plans.--The provisions of
subsections (a)(1)(F), (b)(3), and (c) shall apply to group
health plans and health insurance issuers without regard to
section 732(a).''.
(c) Remedies and Enforcement.--Section 502 of the Employee
Retirement Income Security Act of 1974 (29 U.S.C. 1132) is
amended by adding at the end the following:
``(n) Enforcement of Genetic Nondiscrimination
Requirements.--
``(1) Injunctive relief for irreparable harm.--With respect
to any violation of subsection (a)(1)(F), (b)(3), or (c) of
section 702, a
[[Page S12409]]
participant or beneficiary may seek relief under subsection
502(a)(1)(B) prior to the exhaustion of available
administrative remedies under section 503 if it is
demonstrated to the court, by a preponderance of the
evidence, that the exhaustion of such remedies would cause
irreparable harm to the health of the participant or
beneficiary. Any determinations that already have been made
under section 503 in such case, or that are made in such case
while an action under this paragraph is pending, shall be
given due consideration by the court in any action under this
subsection in such case.
``(2) Equitable relief for genetic nondiscrimination.--
``(A) Reinstatement of benefits where equitable relief has
been awarded.--The recovery of benefits by a participant or
beneficiary under a civil action under this section may
include an administrative penalty under subparagraph (B) and
the retroactive reinstatement of coverage under the plan
involved to the date on which the participant or beneficiary
was denied eligibility for coverage if--
``(i) the civil action was commenced under subsection
(a)(1)(B); and
``(ii) the denial of coverage on which such civil action
was based constitutes a violation of subsection (a)(1)(F),
(b)(3), or (c) of section 702.
``(B) Administrative penalty.--
``(i) In general.--An administrator who fails to comply
with the requirements of subsection (a)(1)(F), (b)(3), or (c)
of section 702 with respect to a participant or beneficiary
may, in an action commenced under subsection (a)(1)(B), be
personally liable in the discretion of the court, for a
penalty in the amount not more than $100 for each day in the
noncompliance period.
``(ii) Noncompliance period.--For purposes of clause (i),
the term `noncompliance period' means the period--
``(I) beginning on the date that a failure described in
clause (i) occurs; and
``(II) ending on the date that such failure is corrected.
``(iii) Payment to participant or beneficiary.--A penalty
collected under this subparagraph shall be paid to the
participant or beneficiary involved.
``(3) Secretarial enforcement authority.--
``(A) General rule.--The Secretary has the authority to
impose a penalty on any failure of a group health plan to
meet the requirements of subsection (a)(1)(F), (b)(3), or (c)
of section 702.
``(B) Amount.--
``(i) In general.--The amount of the penalty imposed by
subparagraph (A) shall be $100 for each day in the
noncompliance period with respect to each individual to whom
such failure relates.
``(ii) Noncompliance period.--For purposes of this
paragraph, the term `noncompliance period' means, with
respect to any failure, the period--
``(I) beginning on the date such failure first occurs; and
``(II) ending on the date such failure is corrected.
``(C) Minimum penalties where failure discovered.--
Notwithstanding clauses (i) and (ii) of subparagraph (D):
``(i) In general.--In the case of 1 or more failures with
respect to an individual--
``(I) which are not corrected before the date on which the
plan receives a notice from the Secretary of such violation;
and
``(II) which occurred or continued during the period
involved;
the amount of penalty imposed by subparagraph (A) by reason
of such failures with respect to such individual shall not be
less than $2,500.
``(ii) Higher minimum penalty where violations are more
than de minimis.--To the extent violations for which any
person is liable under this paragraph for any year are more
than de minimis, clause (i) shall be applied by substituting
`$15,000' for `$2,500' with respect to such person.
``(D) Limitations.--
``(i) Penalty not to apply where failure not discovered
exercising reasonable diligence.--No penalty shall be imposed
by subparagraph (A) on any failure during any period for
which it is established to the satisfaction of the Secretary
that the person otherwise liable for such penalty did not
know, and exercising reasonable diligence would not have
known, that such failure existed.
``(ii) Penalty not to apply to failures corrected within
certain periods.--No penalty shall be imposed by subparagraph
(A) on any failure if--
``(I) such failure was due to reasonable cause and not to
willful neglect; and
``(II) such failure is corrected during the 30-day period
beginning on the first date the person otherwise liable for
such penalty knew, or exercising reasonable diligence would
have known, that such failure existed.
``(iii) Overall limitation for unintentional failures.--In
the case of failures which are due to reasonable cause and
not to willful neglect, the penalty imposed by subparagraph
(A) for failures shall not exceed the amount equal to the
lesser of--
``(I) 10 percent of the aggregate amount paid or incurred
by the employer (or predecessor employer) during the
preceding taxable year for group health plans; or
``(II) $500,000.
``(E) Waiver by secretary.--In the case of a failure which
is due to reasonable cause and not to willful neglect, the
Secretary may waive part or all of the penalty imposed by
subparagraph (A) to the extent that the payment of such
penalty would be excessive relative to the failure
involved.''.
(d) Definitions.--Section 733(d) of the Employee Retirement
Income Security Act of 1974 (29 U.S.C. 1191b(d)) is amended
by adding at the end the following:
``(5) Family member.--The term `family member' means with
respect to an individual--
``(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.--
``(A) In general.--Except as provided in subparagraph (B),
the term `genetic information' means information about--
``(i) an individual's genetic tests;
``(ii) the genetic tests of family members of the
individual; or
``(iii) the occurrence of a disease or disorder in family
members of the individual.
``(B) Exclusions.--The term `genetic information' shall not
include information about the sex or age of an individual.
``(7) Genetic test.--
``(A) In general.--The term `genetic test' means an
analysis of human DNA, RNA, chromosomes, proteins, or
metabolites, that detects genotypes, mutations, or
chromosomal changes.
``(B) Exceptions.--The term `genetic test' does not mean--
``(i) an analysis of proteins or metabolites that does not
detect genotypes, mutations, or chromosomal changes; or
``(ii) an analysis of proteins or metabolites that is
directly related to a manifested disease, disorder, or
pathological condition that could reasonably be detected by a
health care professional with appropriate training and
expertise in the field of medicine involved.
``(8) Genetic services.--The term `genetic services'
means--
``(A) a genetic test;
``(B) genetic counseling (such as obtaining, interpreting,
or assessing genetic information); or
``(C) genetic education.''.
(e) Regulations and Effective Date.--
(1) Regulations.--Not later than 1 year after the date of
enactment of this title, the Secretary of Labor shall issue
final regulations in an accessible format to carry out the
amendments made by this section.
(2) Effective date.--The amendments made by this section
shall apply with respect to group health plans for plan years
beginning after the date that is 18 months after the date of
enactment of this title.
SEC. 102. 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 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 before the
period the following: ``(including information about a
request for or receipt of genetic services by an individual
or family member of such individual)''.
(B) No discrimination in group premiums based on genetic
information.--Section 2702(b) of the Public Health Service
Act (42 U.S.C. 300gg-1(b)) is amended--
(i) in paragraph (2)(A), by inserting before the semicolon
the following: ``, except as provided in paragraph (3)''; and
(ii) by adding at the end the following:
``(3) No discrimination in group premiums based on genetic
information.--For purposes of this section, 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 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 by an individual or family member of such
individual).''.
(2) Limitations on genetic testing.--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 requiring 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--
``(A) limit the authority of a health care professional who
is providing health care services with respect to an
individual to request that such individual or a family member
of such individual undergo a genetic test;
``(B) limit the authority of a health care professional who
is employed by or affiliated with a group health plan or a
health insurance issuer and who is providing health care
services to an individual as part of a bona fide wellness
program to notify such individual of the availability of a
genetic test or to provide information to such individual
regarding such genetic test; or
``(C) authorize or permit a health care professional to
require that an individual undergo a genetic test.
``(d) Application to All Plans.--The provisions of
subsections (a)(1)(F), (b)(3), and (c) shall apply to group
health plans and health insurance issuers without regard to
section 2721(a).''.
(3) Remedies and enforcement.--Section 2722(b) of the
Public Health Service Act (42 U.S.C. 300gg-22)(b)) is amended
by adding at the end the following:
``(3) Enforcement authority relating to genetic
discrimination.--
[[Page S12410]]
``(A) General rule.--In the cases described in paragraph
(1), notwithstanding the provisions of paragraph (2)(C), the
following provisions shall apply with respect to an action
under this subsection by the Secretary with respect to any
failure of a health insurance issuer in connection with a
group health plan, to meet the requirements of subsection
(a)(1)(F), (b)(3), or (c) of section 2702.
``(B) Amount.--
``(i) In general.--The amount of the penalty imposed under
this paragraph shall be $100 for each day in the
noncompliance period with respect to each individual to whom
such failure relates.
``(ii) Noncompliance period.--For purposes of this
paragraph, the term `noncompliance period' means, with
respect to any failure, the period--
``(I) beginning on the date such failure first occurs; and
``(II) ending on the date such failure is corrected.
``(C) Minimum penalties where failure discovered.--
Notwithstanding clauses (i) and (ii) of subparagraph (D):
``(i) In general.--In the case of 1 or more failures with
respect to an individual--
``(I) which are not corrected before the date on which the
plan receives a notice from the Secretary of such violation;
and
``(II) which occurred or continued during the period
involved;
the amount of penalty imposed by subparagraph (A) by reason
of such failures with respect to such individual shall not be
less than $2,500.
``(ii) Higher minimum penalty where violations are more
than de minimis.--To the extent violations for which any
person is liable under this paragraph for any year are more
than de minimis, clause (i) shall be applied by substituting
`$15,000' for `$2,500' with respect to such person.
``(D) Limitations.--
``(i) Penalty not to apply where failure not discovered
exercising reasonable diligence.--No penalty shall be imposed
by subparagraph (A) on any failure during any period for
which it is established to the satisfaction of the Secretary
that the person otherwise liable for such penalty did not
know, and exercising reasonable diligence would not have
known, that such failure existed.
``(ii) Penalty not to apply to failures corrected within
certain periods.--No penalty shall be imposed by subparagraph
(A) on any failure if--
``(I) such failure was due to reasonable cause and not to
willful neglect; and
``(II) such failure is corrected during the 30-day period
beginning on the first date the person otherwise liable for
such penalty knew, or exercising reasonable diligence would
have known, that such failure existed.
``(iii) Overall limitation for unintentional failures.--In
the case of failures which are due to reasonable cause and
not to willful neglect, the penalty imposed by subparagraph
(A) for failures shall not exceed the amount equal to the
lesser of--
``(I) 10 percent of the aggregate amount paid or incurred
by the employer (or predecessor employer) during the
preceding taxable year for group health plans; or
``(II) $500,000.
``(E) Waiver by secretary.--In the case of a failure which
is due to reasonable cause and not to willful neglect, the
Secretary may waive part or all of the penalty imposed by
subparagraph (A) to the extent that the payment of such
penalty would be excessive relative to the failure
involved.''.
(4) 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.--
``(A) In general.--Except as provided in subparagraph (B),
the term `genetic information' means information about--
``(i) an individual's genetic tests;
``(ii) the genetic tests of family members of the
individual; or
``(iii) the occurrence of a disease or disorder in family
members of the individual.
``(B) Exclusions.--The term `genetic information' shall not
include information about the sex or age of an individual.
``(17) Genetic test.--
``(A) In general.--The term `genetic test' means an
analysis of human DNA, RNA, chromosomes, proteins, or
metabolites, that detects genotypes, mutations, or
chromosomal changes.
``(B) Exceptions.--The term `genetic test' does not mean--
``(i) an analysis of proteins or metabolites that does not
detect genotypes, mutations, or chromosomal changes; or
``(ii) an analysis of proteins or metabolites that is
directly related to a manifested disease, disorder, or
pathological condition that could reasonably be detected by a
health care professional with appropriate training and
expertise in the field of medicine involved.
``(18) Genetic services.--The term `genetic services'
means--
``(A) a genetic test;
``(B) genetic counseling (such as obtaining, interpreting,
or assessing genetic information); or
``(C) genetic education.''.
(b) Amendment Relating to the Individual Market.--
(1) In general.--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) is amended--
(A) by redesignating such subpart as subpart 2; and
(B) by adding at the end the following:
``SEC. 2753. PROHIBITION OF HEALTH DISCRIMINATION ON THE
BASIS OF GENETIC INFORMATION.
``(a) Prohibition on Genetic Information as a Condition of
Eligibility.--A health insurance issuer offering health
insurance coverage in the individual market may not establish
rules for the eligibility (including continued eligibility)
of any individual to enroll in individual health insurance
coverage based on genetic information (including information
about a request for or receipt of genetic services by an
individual or family member of such individual).
``(b) Prohibition on Genetic Information in Setting Premium
Rates.--A health insurance issuer offering health insurance
coverage in the individual market shall not adjust premium or
contribution amounts for an individual on the basis of
genetic information concerning the individual or a family
member of the individual (including information about a
request for or receipt of genetic services by an individual
or family member of such individual).
``(c) Genetic Testing.--
``(1) Limitation on requesting or requiring 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 genetic test.
``(2) Rule of construction.--Nothing in this part shall be
construed to--
``(A) limit the authority of a health care professional who
is providing health care services with respect to an
individual to request that such individual or a family
member of such individual undergo a genetic test;
``(B) limit the authority of a health care professional who
is employed by or affiliated with a health insurance issuer
and who is providing health care services to an individual as
part of a bona fide wellness program to notify such
individual of the availability of a genetic test or to
provide information to such individual regarding such genetic
test; or
``(C) authorize or permit a health care professional to
require that an individual undergo a genetic test.''.
(2) Remedies and Enforcement.--Section 2761(b) of the
Public Health Service Act (42 U.S.C. 300gg-61)(b)) is amended
to read as follows:
``(b) Secretarial Enforcement Authority.--The Secretary
shall have the same authority in relation to enforcement of
the provisions of this part with respect to issuers of health
insurance coverage in the individual market in a State as the
Secretary has under section 2722(b)(2), and section
2722(b)(3) with respect to violations of genetic
nondiscrimination provisions, in relation to the enforcement
of the provisions of part A with respect to issuers of health
insurance coverage in the small group market in the State.''.
(c) Elimination of Option of Non-Federal Governmental Plans
To Be Excepted From Requirements 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 requirements concerning
genetic information.--The election described in subparagraph
(A) shall not be available with respect to the provisions of
subsections (a)(1)(F) and (c) of section 2702 and the
provisions of section 2702(b) to the extent that such
provisions 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).''.
(d) Regulations and Effective Date.--
(1) Regulations.--Not later than 1 year after the date of
enactment of this title, the Secretary of Labor and the
Secretary of Health and Human Services (as the case may be)
shall issue final regulations in an accessible format to
carry out the amendments made by this section.
(2) Effective date.--The amendments made by this section
shall apply--
(A) with respect to group health plans, and health
insurance coverage offered in connection with group health
plans, for plan years beginning after the date that is 18
months after the date of enactment of this title; and
(B) with respect to health insurance coverage offered,
sold, issued, renewed, in effect, or operated in the
individual market after the date that is 18 months after the
date of enactment of this title.
SEC. 103. 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 by an individual or family member of such
individual)''.
(2) No discrimination in group premiums based on genetic
information.--Section 9802(b) of the Internal Revenue Code of
1986 is amended--
(A) in paragraph (2)(A), by inserting before the semicolon
the following: ``, except as provided in paragraph (3)''; and
(B) by adding at the end the following:
``(3) No discrimination in group premiums based on genetic
information.--For purposes
[[Page S12411]]
of this section, a group health plan shall not adjust premium
or contribution amounts for a group on the basis of 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 by an individual
or family member of such individual).''.
(b) Limitations on Genetic Testing.--Section 9802 of the
Internal Revenue Code of 1986 is amended by adding at the end
the following:
``(d) Genetic Testing and Genetic Services.--
``(1) Limitation on requesting or requiring genetic
testing.--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--
``(A) limit the authority of a health care professional who
is providing health care services with respect to an
individual to request that such individual or a family member
of such individual undergo a genetic test;
``(B) limit the authority of a health care professional who
is employed by or affiliated with a group health plan and who
is providing health care services to an individual as part of
a bona fide wellness program to notify such individual of the
availability of a genetic test or to provide information to
such individual regarding such genetic test; or
``(C) authorize or permit a health care professional to
require that an individual undergo a genetic test.
``(e) Application to All Plans.--The provisions of
subsections (a)(1)(F), (b)(3), and (d) shall apply to group
health plans and health insurance issuers without regard to
section 9831(a)(2).''.
(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 services.--The term `genetic services'
means--
``(A) a genetic test;
``(B) genetic counseling (such as obtaining, interpreting,
or assessing genetic information); or
``(C) genetic education.
``(8) Genetic information.--
``(A) In general.--Except as provided in subparagraph (B),
the term `genetic information' means information about--
``(i) an individual's genetic tests;
``(ii) the genetic tests of family members of the
individual; or
``(iii) the occurrence of a disease or disorder in family
members of the individual.
``(B) Exclusions.--The term `genetic information' shall not
include information about the sex or age of an individual.
``(9) Genetic test.--
``(A) In general.--The term `genetic test' means an
analysis of human DNA, RNA, chromosomes, proteins, or
metabolites, that detects genotypes, mutations, or
chromosomal changes.
``(B) Exceptions.--The term `genetic test' does not mean--
``(i) an analysis of proteins or metabolites that does not
detect genotypes, mutations, or chromosomal changes; or
``(ii) an analysis of proteins or metabolites that is
directly related to a manifested disease, disorder, or
pathological condition that could reasonably be detected by a
health care professional with appropriate training and
expertise in the field of medicine involved.''.
(d) Regulations and Effective Date.--
(1) Regulations.--Not later than 1 year after the date of
enactment of this title, the Secretary of the Treasury shall
issue final regulations in an accessible format to carry out
the amendments made by this section.
(2) Effective date.--The amendments made by this section
shall apply with respect to group health plans for plan years
beginning after the date that is 18 months after the date of
enactment of this title.
SEC. 104. AMENDMENTS TO TITLE XVIII OF THE SOCIAL SECURITY
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 supplemental policy shall
not deny or condition the issuance or effectiveness of the
policy, and shall not discriminate in the pricing of the
policy (including the adjustment of premium rates) of an
eligible individual on the basis of genetic 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 `genetic information' shall
have the meanings 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 the date that is 18 months after the date of
enactment of this Act.
(b) Limitations on Genetic Testing.--
(1) In general.--Section 1882 of the Social Security Act
(42 U.S.C. 1395ss) is amended by adding at the end the
following:
``(v) Limitations on Genetic Testing.--
``(1) Genetic testing.--
``(A) Limitation on requesting or requiring 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--
``(i) limit the authority of a health care professional who
is providing health care services with respect to an
individual to request that such individual or a family member
of such individual undergo a genetic test;
``(ii) limit the authority of a health care professional
who is employed by or affiliated with an issuer of a medicare
supplemental policy and who is providing health care services
to an individual as part of a bona fide wellness program to
notify such individual of the availability of a genetic test
or to provide information to such individual regarding such
genetic test; or
``(iii) authorize or permit a health care professional to
require that an individual undergo a genetic test.
``(2) Definitions.--In this subsection:
``(A) Family member.--The term `family member' means with
respect to an individual--
``(i) the spouse of the individual;
``(ii) a dependent child of the individual, 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).
``(B) Genetic information.--
``(i) In general.--Except as provided in clause (ii), the
term `genetic information' means information about--
``(I) an individual's genetic tests;
``(II) the genetic tests of family members of the
individual; or
``(III) the occurrence of a disease or disorder in family
members of the individual.
``(ii) Exclusions.--The term `genetic information' shall
not include information about the sex or age of an
individual.
``(C) Genetic test.--
``(i) In general.--The term `genetic test' means an
analysis of human DNA, RNA, chromosomes, proteins, or
metabolites, that detects genotypes, mutations, or
chromosomal changes.
``(ii) Exceptions.--The term `genetic test' does not mean--
``(I) an analysis of proteins or metabolites that does not
detect genotypes, mutations, or chromosomal changes; or
``(II) an analysis of proteins or metabolites that is
directly related to a manifested disease, disorder, or
pathological condition that could reasonably be detected by a
health care professional with appropriate training and
expertise in the field of medicine involved.
``(D) Genetic services.--The term `genetic services'
means--
``(i) a genetic test;
``(ii) genetic counseling (such as obtaining, interpreting,
or assessing genetic information); or
``(iii) genetic education.
``(E) Issuer of a medicare supplemental policy.--The term
`issuer of a medicare supplemental policy' includes a third-
party administrator or other person acting for or on behalf
of such issuer.''.
(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 following:
``(4) The issuer of the medicare supplemental policy
complies with subsection (s)(2)(E) and subsection (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 on or after
the date that is 18 months after the date of enactment of
this Act.
(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 section, the State regulatory
program shall not be considered to be out of compliance with
the requirements 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, 2004, the
National Association of Insurance Commissioners (in this
subsection referred to as the ``NAIC'') modifies its NAIC
Model Regulation relating to section 1882 of the Social
Security Act (referred 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 regulation (including the revised NAIC
model regulation and the 1991 NAIC Model Regulation) for the
purposes of such section.
(3) Secretary standards.--If the NAIC does not make the
modifications described in paragraph (2) within the period
specified in such paragraph, the Secretary of Health and
Human Services shall, not later than October 1, 2004, 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 subparagraph (B), the date
specified in this paragraph for a State is the earlier of--
(i) the date the State changes its statutes or regulations
to conform its regulatory program to the changes made by this
section, or
(ii) October 1, 2004.
(B) Additional legislative action required.--In the case of
a State which the Secretary identifies as--
(i) requiring State legislation (other than legislation
appropriating funds) to conform its regulatory program to the
changes made in this section, but
[[Page S12412]]
(ii) having a legislature which is not scheduled to meet in
2004 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, 2004. 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.
SEC. 105. PRIVACY AND CONFIDENTIALITY.
(a) Applicability.--Except as provided in subsection (d),
the provisions of this section shall apply to group health
plans, health insurance issuers (including issuers in
connection with group health plans or individual health
coverage), and issuers of medicare supplemental policies,
without regard to--
(1) section 732(a) of the Employee Retirement Income
Security Act of 1974 (29 U.S.C. 1191a(a));
(2) section 2721(a) of the Public Health Service Act (42
U.S.C. 300gg-21(a)); and
(3) section 9831(a)(2) of the Internal Revenue Code of
1986.
(b) Compliance With Certain Confidentiality Standards With
Respect to Genetic Information.--
(1) In general.--The regulations promulgated by the
Secretary of Health and Human Services under part C of title
XI of the Social Security Act (42 U.S.C. 1320d et seq.) and
section 264 of the Health Insurance Portability and
Accountability Act of 1996 (42 U.S.C. 1320d-2 note) shall
apply to the use or disclosure of genetic information.
(2) Prohibition on underwriting and premium rating.--
Notwithstanding paragraph (1), a group health plan, a health
insurance issuer, or issuer of a medicare supplemental policy
shall not use or disclose genetic information (including
information about a request for or a receipt of genetic
services by an individual or family member of such
individual) for purposes of underwriting, determinations of
eligibility to enroll, premium rating, or the creation,
renewal or replacement of a plan, contract or coverage for
health insurance or health benefits.
(c) Prohibition on Collection of Genetic Information.--
(1) In general.--A group health plan, health insurance
issuer, or issuer of a medicare supplemental policy shall not
request, require, or purchase genetic information (including
information about a request for or a receipt of genetic
services by an individual or family member of such
individual) for purposes of underwriting, determinations of
eligibility to enroll, premium rating, or the creation,
renewal or replacement of a plan, contract or coverage for
health insurance or health benefits.
(2) Limitation relating to the collection of genetic
information prior to enrollment.--A group health plan, health
insurance issuer, or issuer of a medicare supplemental policy
shall not request, require, or purchase genetic information
(including information about a request for or a receipt of
genetic services by an individual or family member of such
individual) concerning a participant, beneficiary, or
enrollee prior to the enrollment, and in connection with such
enrollment, of such individual under the plan, coverage, or
policy.
(3) Incidental collection.--Where a group health plan,
health insurance issuer, or issuer of a medicare supplemental
policy obtains genetic information incidental to the
requesting, requiring, or purchasing of other information
concerning a participant, beneficiary, or enrollee, such
request, requirement, or purchase shall not be considered a
violation of this subsection if--
(A) such request, requirement, or purchase is not in
violation of paragraph (1); and
(B) any genetic information (including information about a
request for or receipt of genetic services) requested,
required, or purchased is not used or disclosed in violation
of subsection (b).
(d) Application of Confidentiality Standards.--The
provisions of subsections (b) and (c) shall not apply--
(1) to group health plans, health insurance issuers, or
issuers of medicare supplemental policies that are not
otherwise covered under the regulations promulgated by the
Secretary of Health and Human Services under part C of title
XI of the Social Security Act (42 U.S.C. 1320d et seq.) and
section 264 of the Health Insurance Portability and
Accountability Act of 1996 (42 U.S.C. 1320d-2 note); and
(2) to genetic information that is not considered to be
individually-identifiable health information under the
regulations promulgated by the Secretary of Health and Human
Services under part C of title XI of the Social Security Act
(42 U.S.C. 1320d et seq.) and section 264 of the Health
Insurance Portability and Accountability Act of 1996 (42
U.S.C. 1320d-2 note).
(e) Enforcement.--A group health plan, health insurance
issuer, or issuer of a medicare supplemental policy that
violates a provision of this section shall be subject to the
penalties described in sections 1176 and 1177 of the Social
Security Act (42 U.S.C. 1320d-5 and 1320d-6) in the same
manner and to the same extent that such penalties apply to
violations of part C of title XI of such Act.
(f) Preemption.--
(1) In general.--A provision or requirement under this
section or a regulation promulgated under this section shall
supersede any contrary provision of State law unless such
provision of State law imposes requirements, standards, or
implementation specifications that are more stringent than
the requirements, standards, or implementation specifications
imposed under this section or such regulations. No penalty,
remedy, or cause of action to enforce such a State law
that is more stringent shall be preempted by this section.
(2) Rule of construction.--Nothing in paragraph (1) shall
be construed to establish a penalty, remedy, or cause of
action under State law if such penalty, remedy, or cause of
action is not otherwise available under such State law.
(g) Coordination With Privacy Regulations.--The Secretary
shall implement and administer this section in a manner that
is consistent with the implementation and administration by
the Secretary of the regulations promulgated by the Secretary
of Health and Human Services under part C of title XI of the
Social Security Act (42 U.S.C. 1320d et seq.) and section 264
of the Health Insurance Portability and Accountability Act of
1996 (42 U.S.C. 1320d-2 note).
(h) Definitions.--In this section:
(1) Genetic information; genetic services.--The terms
``family member'', ``genetic information'', ``genetic
services'', and ``genetic test'' have the meanings given such
terms in section 2791 of the Public Health Service Act (42
U.S.C. 300gg-91), as amended by this Act.
(2) Group health plan; health insurance issuer.--The terms
``group health plan'' and ``health insurance issuer'' include
only those plans and issuers that are covered under the
regulations described in subsection (d)(1).
(3) Issuer of a medicare supplemental policy.--The term
``issuer of a medicare supplemental policy'' means an issuer
described in section 1882 of the Social Security Act (42
insert 1395ss).
(4) Secretary.--The term ``Secretary'' means the Secretary
of Health and Human Services.
SEC. 106. ASSURING COORDINATION.
(a) In General.--Except as provided in subsection (b), the
Secretary of the Treasury, the Secretary of Health and Human
Services, and the Secretary of Labor shall ensure, through
the execution of an interagency memorandum of understanding
among such Secretaries, that--
(1) regulations, rulings, and interpretations issued by
such Secretaries relating to the same matter over which two
or more such Secretaries have responsibility under this title
(and the amendments made by this title) are administered so
as to have the same effect at all times; and
(2) coordination of policies relating to enforcing the same
requirements through such Secretaries in order to have a
coordinated enforcement strategy that avoids duplication of
enforcement efforts and assigns priorities in enforcement.
(b) Authority of the Secretary.--The Secretary of Health
and Human Services has the sole authority to promulgate
regulations to implement section 105.
SEC. 107. REGULATIONS; EFFECTIVE DATE.
(a) Regulations.--Not later than 1 year after the date of
enactment of this title, the Secretary of Labor, the
Secretary of Health and Human Services, and the Secretary of
the Treasury shall issue final regulations in an accessible
format to carry out this title.
(b) Effective Date.--Except as provided in section 104, the
amendments made by this title shall take effect on the date
that is 18 months after the date of enactment of this Act.
TITLE II--PROHIBITING EMPLOYMENT DISCRIMINATION ON THE BASIS OF GENETIC
INFORMATION
SEC. 201. DEFINITIONS.
In this title:
(1) Commission.--The term ``Commission'' means the Equal
Employment Opportunity Commission as created by section 705
of the Civil Rights Act of 1964 (42 U.S.C. 2000e-4).
(2) Employee; employer; employment agency; labor
organization; member.--
(A) In general.--The term ``employee'' means--
(i) an employee (including an applicant), as defined in
section 701(f) of the Civil Rights Act of 1964 (42 U.S.C.
2000e(f));
(ii) a State employee (including an applicant) described in
section 304(a) of the Government Employee Rights Act of 1991
(42 U.S.C. 2000e-16c(a));
(iii) a covered employee (including an applicant), as
defined in section 101 of the Congressional Accountability
Act of 1995 (2 U.S.C. 1301);
(iv) a covered employee (including an applicant), as
defined in section 411(c) of title 3, United States Code; or
(v) an employee or applicant to which section 717(a) of the
Civil Rights Act of 1964 (42 U.S.C. 2000e-16(a)) applies.
(B) Employer.--The term ``employer'' means--
(i) an employer (as defined in section 701(b) of the Civil
Rights Act of 1964 (42 U.S.C. 2000e(b));
(ii) an entity employing a State employee described in
section 304(a) of the Government Employee Rights Act of 1991;
(iii) an employing office, as defined in section 101 of the
Congressional Accountability Act of 1995;
(iv) an employing office, as defined in section 411(c) of
title 3, United States Code; or
(v) an entity to which section 717(a) of the Civil Rights
Act of 1964 applies.
(C) Employment agency; labor organization.--The terms
``employment agency'' and ``labor organization'' have the
meanings given the terms in section 701 of the Civil Rights
Act of 1964 (42 U.S.C. 2000e).
(D) Member.--The term ``member'', with respect to a labor
organization, includes an applicant for membership in a labor
organization.
(3) 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).
(4) Genetic information.--
(A) In general.--Except as provided in subparagraph (B),
the term ``genetic information'' means information about--
[[Page S12413]]
(i) an individual's genetic tests;
(ii) the genetic tests of family members of the individual;
or
(iii) the occurrence of a disease or disorder in family
members of the individual.
(B) Exceptions.--The term ``genetic information'' shall not
include information about the sex or age of an individual.
(5) Genetic monitoring.--The term ``genetic monitoring''
means the periodic examination of employees 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
effects of or control adverse environmental exposures in the
workplace.
(6) Genetic services.--The term ``genetic services''
means--
(A) a genetic test;
(B) genetic counseling (such as obtaining, interpreting or
assessing genetic information); or
(C) genetic education.
(7) Genetic test.--
(A) In general.--The term ``genetic test'' means the
analysis of human DNA, RNA, chromosomes, proteins, or
metabolites, that detects genotypes, mutations, or
chromosomal changes.
(B) Exception.--The term ``genetic test'' does not mean an
analysis of proteins or metabolites that does not detect
genotypes, mutations, or chromosomal changes.
SEC. 202. EMPLOYER PRACTICES.
(a) Use of Genetic Information.--It shall be an unlawful
employment practice for an employer--
(1) to fail or refuse to hire or to discharge any employee,
or otherwise to discriminate against any employee with
respect to the compensation, terms, conditions, or privileges
of employment of the employee, because of genetic information
with respect to the employee (or information about a request
for or the receipt of genetic services by such employee or
family member of such employee); or
(2) to limit, segregate, or classify the employees of the
employer in any way that would deprive or tend to deprive any
employee of employment opportunities or otherwise adversely
affect the status of the employee as an employee, because of
genetic information with respect to the employee (or
information about a request for or the receipt of genetic
services by such employee or family member of such employee).
(b) Acquisition of Genetic Information.--It shall be an
unlawful employment practice for an employer to request,
require, or purchase genetic information with respect to an
employee or a family member of the employee (or information
about a request for the receipt of genetic services by such
employee or a family member of such employee) except--
(1) where an employer inadvertently requests or requires
family medical history of the employee or family member of
the employee;
(2) where--
(A) health or genetic services are offered by the employer,
including such services offered as part of a bona fide
wellness program;
(B) the employee provides prior, knowing, voluntary, and
written authorization;
(C) only the employee (or family member if the family
member is receiving genetic services) and the licensed health
care professional or board certified genetic counselor
involved in providing such services receive individually
identifiable information concerning the results of such
services; and
(D) any individually identifiable genetic information
provided under subparagraph (C) in connection with the
services provided under subparagraph (A) is only available
for purposes of such services and shall not be disclosed to
the employer except in aggregate terms that do not disclose
the identity of specific employees;
(3) where an employer requests or requires family medical
history from the employee to comply with the certification
provisions of section 103 of the Family and Medical Leave Act
of 1993 (29 U.S.C. 2613) or such requirements under State
family and medical leave laws;
(4) where an employer purchases documents that are
commercially and publicly available (including newspapers,
magazines, periodicals, and books, but not including medical
databases or court records) that include family medical
history; or
(5) where the information involved is to be used for
genetic monitoring of the biological effects of toxic
substances in the workplace, but only if--
(A) the employer provides written notice of the genetic
monitoring to the employee;
(B)(i) the employee provides prior, knowing, voluntary, and
written authorization; or
(ii) the genetic monitoring is required by Federal or State
law;
(C) the employee is informed of individual monitoring
results;
(D) the monitoring is in compliance with--
(i) any Federal genetic monitoring regulations, including
any such 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.), the Federal Mine Safety
and Health Act of 1977 (30 U.S.C. 801 et seq.), or the
Atomic Energy Act of 1954 (42 U.S.C. 2011 et seq.); or
(ii) State genetic monitoring regulations, in the case of a
State that is implementing genetic monitoring regulations
under the authority of the Occupational Safety and Health Act
of 1970 (29 U.S.C. 651 et seq.); and
(E) the employer, excluding any licensed health care
professional or board certified genetic counselor that is
involved in the genetic monitoring program, receives the
results of the monitoring only in aggregate terms that do not
disclose the identity of specific employees;
(c) Preservation of Protections.--In the case of
information to which any of paragraphs (1) through (5) of
subsection (b) applies, such information may not be used in
violation of paragraph (1) or (2) of subsection (a) or
treated or disclosed in a manner that violates section
206.
SEC. 203. EMPLOYMENT AGENCY PRACTICES.
(a) Use of Genetic Information.--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 because of 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 otherwise adversely affect the status of
the individual as an employee, because of 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); or
(3) to cause or attempt to cause an employer to
discriminate against an individual in violation of this
title.
(b) Acquisition of Genetic Information.--It shall be an
unlawful employment practice for an employment agency to
request, require, or purchase genetic information with
respect to an individual or a family member of the individual
(or information about a request for the receipt of genetic
services by such individual or a family member of such
individual) except--
(1) where an employment agency inadvertently requests or
requires family medical history of the individual or family
member of the individual;
(2) where--
(A) health or genetic services are offered by the
employment agency, including such services offered as part of
a bona fide wellness program;
(B) the individual provides prior, knowing, voluntary, and
written authorization;
(C) only the individual (or family member if the family
member is receiving genetic services) and the licensed health
care professional or board certified genetic counselor
involved in providing such services receive individually
identifiable information concerning the results of such
services; and
(D) any individually identifiable genetic information
provided under subparagraph (C) in connection with the
services provided under subparagraph (A) is only available
for purposes of such services and shall not be disclosed to
the employment agency except in aggregate terms that do not
disclose the identity of specific individuals;
(3) where an employment agency requests or requires family
medical history from the individual to comply with the
certification provisions of section 103 of the Family and
Medical Leave Act of 1993 (29 U.S.C. 2613) or such
requirements under State family and medical leave laws;
(4) where an employment agency purchases documents that are
commercially and publicly available (including newspapers,
magazines, periodicals, and books, but not including medical
databases or court records) that include family medical
history; or
(5) where the information involved is to be used for
genetic monitoring of the biological effects of toxic
substances in the workplace, but only if--
(A) the employment agency provides written notice of the
genetic monitoring to the individual;
(B)(i) the individual provides prior, knowing, voluntary,
and written authorization; or
(ii) the genetic monitoring is required by Federal or State
law;
(C) the individual is informed of individual monitoring
results;
(D) the monitoring is in compliance with--
(i) any Federal genetic monitoring regulations, including
any such 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.), the Federal Mine Safety and
Health Act of 1977 (30 U.S.C. 801 et seq.), or the Atomic
Energy Act of 1954 (42 U.S.C. 2011 et seq.); or
(ii) State genetic monitoring regulations, in the case of a
State that is implementing genetic monitoring regulations
under the authority of the Occupational Safety and Health Act
of 1970 (29 U.S.C. 651 et seq.); and
(E) the employment agency, excluding any licensed health
care professional or board certified genetic counselor that
is involved in the genetic monitoring program, receives the
results of the monitoring only in aggregate terms that do not
disclose the identity of specific individuals;
(c) Preservation of Protections.--In the case of
information to which any of paragraphs (1) through (5) of
subsection (b) applies, such information may not be used in
violation of paragraph (1) or (2) of subsection (a) or
treated or disclosed in a manner that violates section 206.
SEC. 204. LABOR ORGANIZATION PRACTICES.
(a) Use of Genetic Information.--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
member because of genetic information with respect to the
member (or information about a request for or the receipt of
genetic services by such member or family member of such
member);
(2) to limit, segregate, or classify the members of the
organization, or fail or refuse to refer for
[[Page S12414]]
employment any member, in any way that would deprive or tend
to deprive any member of employment opportunities, or
otherwise adversely affect the status of the member as an
employee, because of genetic information with respect to the
member (or information about a request for or the receipt of
genetic services by such member or family member of such
member); or
(3) to cause or attempt to cause an employer to
discriminate against a member in violation of this title.
(b) Acquisition of Genetic Information.--It shall be an
unlawful employment practice for a labor organization to
request, require, or purchase genetic information with
respect to a member or a family member of the member (or
information about a request for the receipt of genetic
services by such member or a family member of such member)
except--
(1) where a labor organization inadvertently requests or
requires family medical history of the member or family
member of the member;
(2) where--
(A) health or genetic services are offered by the labor
organization, including such services offered as part of a
bona fide wellness program;
(B) the member provides prior, knowing, voluntary, and
written authorization;
(C) only the member (or family member if the family member
is receiving genetic services) and the licensed health care
professional or board certified genetic counselor involved in
providing such services receive individually identifiable
information concerning the results of such services; and
(D) any individually identifiable genetic information
provided under subparagraph (C) in connection with the
services provided under subparagraph (A) is only available
for purposes of such services and shall not be disclosed to
the labor organization except in aggregate terms that do not
disclose the identity of specific members;
(3) where a labor organization requests or requires family
medical history from the members to comply with the
certification provisions of section 103 of the Family and
Medical Leave Act of 1993 (29 U.S.C. 2613) or such
requirements under State family and medical leave laws;
(4) where a labor organization purchases documents that are
commercially and publicly available (including newspapers,
magazines, periodicals, and books, but not including medical
databases or court records) that include family medical
history; or
(5) where the information involved is to be used for
genetic monitoring of the biological effects of toxic
substances in the workplace, but only if--
(A) the labor organization provides written notice of the
genetic monitoring to the member;
(B)(i) the member provides prior, knowing, voluntary, and
written authorization; or
(ii) the genetic monitoring is required by Federal or State
law;
(C) the member is informed of individual monitoring
results;
(D) the monitoring is in compliance with--
(i) any Federal genetic monitoring regulations, including
any such 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.), the Federal Mine Safety and
Health Act of 1977 (30 U.S.C. 801 et seq.), or the Atomic
Energy Act of 1954 (42 U.S.C. 2011 et seq.); or
(ii) State genetic monitoring regulations, in the case of a
State that is implementing genetic monitoring regulations
under the authority of the Occupational Safety and Health Act
of 1970 (29 U.S.C. 651 et seq.); and
(E) the labor organization, excluding any licensed health
care professional or board certified genetic counselor that
is involved in the genetic monitoring program, receives the
results of the monitoring only in aggregate terms that do not
disclose the identity of specific members;
(c) Preservation of Protections.--In the case of
information to which any of paragraphs (1) through (5) of
subsection (b) applies, such information may not be used in
violation of paragraph (1) or (2) of subsection (a) or
treated or disclosed in a manner that violates section 206.
SEC. 205. TRAINING PROGRAMS.
(a) Use of Genetic Information.--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 because of
genetic information with respect to the individual (or
information about a request for or the receipt of genetic
services by such individual or a family member of such
individual) in admission to, or employment in, any program
established to provide apprenticeship or other training or
retraining;
(2) to limit, segregate, or classify the applicants for or
participants in such apprenticeship or other training or
retraining, 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 otherwise
adversely affect the status of the individual as an employee,
because of genetic information with respect to the individual
(or information about a request for or receipt of genetic
services by such individual or family member of such
individual); or
(3) to cause or attempt to cause an employer to
discriminate against an applicant for or a participant in
such apprenticeship or other training or retraining in
violation of this title.
(b) Acquisition of Genetic Information.--It shall be an
unlawful employment practice for an employer, labor
organization, or joint labor-management committee described
in subsection (a) to request, require, or purchase genetic
information with respect to an individual or a family member
of the individual (or information about a request for the
receipt of genetic services by such individual or a family
member of such individual) except--
(1) where the employer, labor organization, or joint labor-
management committee inadvertently requests or requires
family medical history of the individual or family member of
the individual;
(2) where--
(A) health or genetic services are offered by the employer,
labor organization, or joint labor-management committee,
including such services offered as part of a bona fide
wellness program;
(B) the individual provides prior, knowing, voluntary, and
written authorization;
(C) only the individual (or family member if the family
member is receiving genetic services) and the licensed health
care professional or board certified genetic counselor
involved in providing such services receive individually
identifiable information concerning the results of such
services;
(D) any individually identifiable genetic information
provided under subparagraph (C) in connection with the
services provided under subparagraph (A) is only available
for purposes of such services and shall not be disclosed to
the employer, labor organization, or joint labor-management
committee except in aggregate terms that do not disclose the
identity of specific individuals;
(3) where the employer, labor organization, or joint labor-
management committee requests or requires family medical
history from the individual to comply with the certification
provisions of section 103 of the Family and Medical Leave Act
of 1993 (29 U.S.C. 2613) or such requirements under State
family and medical leave laws;
(4) where the employer, labor organization, or joint labor-
management committee purchases documents that are
commercially and publicly available (including newspapers,
magazines, periodicals, and books, but not including medical
databases or court records) that include family medical
history; or
(5) where the information involved is to be used for
genetic monitoring of the biological effects of toxic
substances in the workplace, but only if--
(A) the employer, labor organization, or joint labor-
management committee provides written notice of the genetic
monitoring to the individual;
(B)(i) the individual provides prior, knowing, voluntary,
and written authorization; or
(ii) the genetic monitoring is required by Federal or State
law;
(C) the individual is informed of individual monitoring
results;
(D) the monitoring is in compliance with--
(i) any Federal genetic monitoring regulations, including
any such 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.), the Federal Mine Safety and
Health Act of 1977 (30 U.S.C. 801 et seq.), or the Atomic
Energy Act of 1954 (42 U.S.C. 2011 et seq.); or
(ii) State genetic monitoring regulations, in the case of a
State that is implementing genetic monitoring regulations
under the authority of the Occupational Safety and Health Act
of 1970 (29 U.S.C. 651 et seq.); and
(E) the employer, labor organization, or joint labor-
management committee, excluding any licensed health care
professional or board certified genetic counselor that is
involved in the genetic monitoring program, receives the
results of the monitoring only in aggregate terms that do not
disclose the identity of specific individuals;
(c) Preservation of protections.--In the case of
information to which any of paragraphs (1) through (5) of
subsection (b) applies, such information may not be used in
violation of paragraph (1) or (2) of subsection (a) or
treated or disclosed in a manner that violates section 206.
SEC. 206. CONFIDENTIALITY OF GENETIC INFORMATION.
(a) Treatment of Information as Part of Confidential
Medical Record.--If an employer, employment agency, labor
organization, or joint labor-management committee possesses
genetic information about an employee or member (or
information about a request for or receipt of genetic
services by such employee or member or family member of such
employee or member), such information shall be maintained on
separate forms and in separate medical files and be treated
as a confidential medical record of the employee or member.
(b) Limitation on Disclosure.--An employer, employment
agency, labor organization, or joint labor-management
committee shall not disclose genetic information concerning
an employee or member (or information about a request for or
receipt of genetic services by such employee or member or
family member of such employee or member) except--
(1) to the employee (or family member if the family member
is receiving the genetic services) or member of a labor
organization at the request of the employee or member of such
organization;
(2) to an occupational or other health researcher if the
research is conducted in compliance with the regulations and
protections provided for under part 46 of title 45, Code of
Federal Regulations;
(3) in response to an order of a court, except that--
(A) the employer, employment agency, labor organization, or
joint labor-management committee may disclose only the
genetic information expressly authorized by such order; and
(B) if the court order was secured without the knowledge of
the employee or member to whom the information refers, the
employer, employment agency, labor organization, or joint
labor-
[[Page S12415]]
management committee shall provide the employee or member
with adequate notice to challenge the court order;
(4) to government officials who are investigating
compliance with this title if the information is relevant to
the investigation; or
(5) to the extent that such disclosure is made in
connection with the employee's compliance with the
certification provisions of section 103 of the Family and
Medical Leave Act of 1993 (29 U.S.C. 2613) or such
requirements under State family and medical leave laws.
SEC. 207. REMEDIES AND ENFORCEMENT.
(a) Employees Covered by Title VII of the Civil Rights Act
of 1964.--
(1) In general.--The powers, remedies, and procedures
provided in sections 705, 706, 707, 709, 710, and 711 of the
Civil Rights Act of 1964 (42 U.S.C. 2000e-4 et seq.) to the
Commission, the Attorney General, or any person, alleging a
violation of title VII of that Act (42 U.S.C. 2000e et seq.)
shall be the powers, remedies, and procedures this title
provides to the Commission, the Attorney General, or any
person, respectively, alleging an unlawful employment
practice in violation of this title against an employee
described in section 201(2)(A)(i), except as provided in
paragraphs (2) and (3).
(2) Costs and fees.--The powers, remedies, and procedures
provided in subsections (b) and (c) of section 722 of the
Revised Statutes (42 U.S.C. 1988), shall be powers, remedies,
and procedures this title provides to the Commission, the
Attorney General, or any person, alleging such a practice.
(3) Damages.--The powers, remedies, and procedures provided
in section 1977A of the Revised Statutes (42 U.S.C. 1981a),
including the limitations contained in subsection (b)(3) of
such section 1977A, shall be powers, remedies, and procedures
this title provides to the Commission, the Attorney General,
or any person, alleging such a practice (not an employment
practice specifically excluded from coverage under section
1977A(a)(1) of the Revised Statutes).
(b) Employees Covered by Government Employee Rights Act of
1991.--
(1) In general.--The powers, remedies, and procedures
provided in sections 302 and 304 of the Government Employee
Rights Act of 1991 (42 U.S.C. 2000e-16b, 2000e-16c) to the
Commission, or any person, alleging a violation of section
302(a)(1) of that Act (42 U.S.C. 2000e-16b(a)(1)) shall be
the powers, remedies, and procedures this title provides to
the Commission, or any person, respectively, alleging an
unlawful employment practice in violation of this title
against an employee described in section 201(2)(A)(ii),
except as provided in paragraphs (2) and (3).
(2) Costs and fees.--The powers, remedies, and procedures
provided in subsections (b) and (c) of section 722 of the
Revised Statutes (42 U.S.C. 1988), shall be powers, remedies,
and procedures this title provides to the Commission, or any
person, alleging such a practice.
(3) Damages.--The powers, remedies, and procedures provided
in section 1977A of the Revised Statutes (42 U.S.C. 1981a),
including the limitations contained in subsection (b)(3) of
such section 1977A, shall be powers, remedies, and procedures
this title provides to the Commission, or any person,
alleging such a practice (not an employment practice
specifically excluded from coverage under section 1977A(a)(1)
of the Revised Statutes).
(c) Employees Covered by Congressional Accountability Act
of 1995.--
(1) In general.--The powers, remedies, and procedures
provided in the Congressional Accountability Act of 1995 (2
U.S.C. 1301 et seq.) to the Board (as defined in section 101
of that Act (2 U.S.C. 1301)), or any person, alleging a
violation of section 201(a)(1) of that Act (42 U.S.C.
1311(a)(1)) shall be the powers, remedies, and procedures
this title provides to that Board, or any person, alleging an
unlawful employment practice in violation of this title
against an employee described in section 201(2)(A)(iii),
except as provided in paragraphs (2) and (3).
(2) Costs and fees.--The powers, remedies, and procedures
provided in subsections (b) and (c) of section 722 of the
Revised Statutes (42 U.S.C. 1988), shall be powers, remedies,
and procedures this title provides to that Board, or any
person, alleging such a practice.
(3) Damages.--The powers, remedies, and procedures provided
in section 1977A of the Revised Statutes (42 U.S.C. 1981a),
including the limitations contained in subsection (b)(3) of
such section 1977A, shall be powers, remedies, and procedures
this title provides to that Board, or any person, alleging
such a practice (not an employment practice specifically
excluded from coverage under section 1977A(a)(1) of the
Revised Statutes).
(4) Other applicable provisions.--With respect to a claim
alleging a practice described in paragraph (1), title III of
the Congressional Accountability Act of 1995 (2 U.S.C. 1381
et seq.) shall apply in the same manner as such title applies
with respect to a claim alleging a violation of section
201(a)(1) of such Act (2 U.S.C. 1311(a)(1)).
(d) Employees Covered by Chapter 5 of Title 3, United
States Code.--
(1) In general.--The powers, remedies, and procedures
provided in chapter 5 of title 3, United States Code, to the
President, the Commission, the Merit Systems Protection
Board, or any person, alleging a violation of section
411(a)(1) of that title, shall be the powers, remedies, and
procedures this title provides to the President, the
Commission, such Board, or any person, respectively, alleging
an unlawful employment practice in violation of this title
against an employee described in section 201(2)(A)(iv),
except as provided in paragraphs (2) and (3).
(2) Costs and fees.--The powers, remedies, and procedures
provided in subsections (b) and (c) of section 722 of the
Revised Statutes (42 U.S.C. 1988), shall be powers, remedies,
and procedures this title provides to the the President, the
Commission, such Board, or any person, alleging such a
practice.
(3) Damages.--The powers, remedies, and procedures provided
in section 1977A of the Revised Statutes (42 U.S.C. 1981a),
including the limitations contained in subsection (b)(3) of
such section 1977A, shall be powers, remedies, and procedures
this title provides to the President, the Commission, such
Board, or any person, alleging such a practice (not an
employment practice specifically excluded from coverage under
section 1977A(a)(1) of the Revised Statutes).
(e) Employees Covered by Section 717 of the Civil Rights
Act of 1964.--
(1) In general.--The powers, remedies, and procedures
provided in section 717 of the Civil Rights Act of 1964 (42
U.S.C. 2000e-16) to the Commission, the Attorney General, the
Librarian of Congress, or any person, alleging a violation of
that section shall be the powers, remedies, and procedures
this title provides to the Commission, the Attorney General,
the Librarian of Congress, or any person, respectively,
alleging an unlawful employment practice in violation of this
title against an employee or applicant described in section
201(2)(A)(v), except as provided in paragraphs (2) and (3).
(2) Costs and fees.--The powers, remedies, and procedures
provided in subsections (b) and (c) of section 722 of the
Revised Statutes (42 U.S.C. 1988), shall be powers, remedies,
and procedures this title provides to the Commission, the
Attorney General, the Librarian of Congress, or any person,
alleging such a practice.
(3) Damages.--The powers, remedies, and procedures provided
in section 1977A of the Revised Statutes (42 U.S.C. 1981a),
including the limitations contained in subsection (b)(3) of
such section 1977A, shall be powers, remedies, and procedures
this title provides to the Commission, the Attorney General,
the Librarian of Congress, or any person, alleging such a
practice (not an employment practice specifically excluded
from coverage under section 1977A(a)(1) of the Revised
Statutes).
(f) Definition.--In this section, the term ``Commission''
means the Equal Employment Opportunity Commission.
SEC. 208. DISPARATE IMPACT.
(a) General Rule.--Notwithstanding any other provision of
this Act, ``disparate impact'', as that term is used in
section 703(k) of the Civil Rights Act of 1964 (42 U.S.C.
2000e-d(k))), on the basis of genetic information does not
establish a cause of action under this Act.
(b) Commission.--On the date that is 6 years after the date
of enactment of this Act, there shall be established a
commission, to be known as the Genetic Nondiscrimination
Study Commission (referred to in this section as the
``Commission'') to review the developing science of genetics
and to make recommendations to Congress regarding whether to
provide a disparate impact cause of action under this Act.
(c) Membership.--
(1) In general.--The Commission shall be composed of 8
members, of which--
(A) 1 member shall be appointed by the Majority Leader of
the Senate;
(B) 1 member shall be appointed by the Minority Leader of
the Senate;
(C) 1 member shall be appointed by the Chairman of the
Committee on Health, Education, Labor, and Pensions of the
Senate;
(D) 1 member shall be appointed by the ranking minority
member of the Committee on Health, Education, Labor, and
Pensions of the Senate;
(E) 1 member shall be appointed by the Speaker of the House
of Representative;
(F) 1 member shall be appointed by the Minority Leader of
the House of Representative;
(G) 1 member shall be appointed by the Chairman of the
Committee on Education and the Workforce of the House of
Representatives; and
(H) 1 member shall be appointed by the ranking minority
member of the Committee on Education and the Workforce of the
House of Representatives.
(2) Compensation and expenses.--The members of the
Commission shall not receive compensation for the performance
of services for the Commission, but shall be allowed travel
expenses, including per diem in lieu of subsistence, at rates
authorized for employees of agencies under subchapter I of
chapter 57 of title 5, United States Code, while away from
their homes or regular places of business in the performance
of services for the Commission.
(d) Administrative Provisions.--
(1) Location.--The Commission shall be located in a
facility maintained by the Equal Employment Opportunity
Commission.
(2) Detail of government employees.--Any Federal Government
employee may be detailed to the Commission without
reimbursement, and such detail shall be without interruption
or loss of civil service status or privilege.
(3) Information from federal agencies.--The Commission may
secure directly from any Federal department or agency such
information as the Commission considers necessary to carry
out the provisions of this section. Upon request of the
Commission, the head of such department or agency shall
furnish such information to the Commission.
(4) Hearings.--The Commission may hold such hearings, sit
and act at such times and places, take such testimony, and
receive such evidence as the Commission considers advisable
to carry out the objectives of this section, except that, to
the extent possible, the Commission shall use existing
data and research.
(5) Postal services.--The Commission may use the United
States mails in the same manner and under the same conditions
as other departments and agencies of the Federal Government.
(e) Report.--Not later than 1 year after all of the members
are appointed to the Commission
[[Page S12416]]
under subsection (c)(1), the Commission shall submit to
Congress a report that summarizes the findings of the
Commission and makes such recommendations for legislation as
are consistent with this Act.
(f) Authorization of Appropriations.--There are authorized
to be appropriated to the Equal Employment Opportunity
Commission such sums as may be necessary to carry out this
section.
SEC. 209. CONSTRUCTION.
Nothing in this title shall be construed to--
(1) limit the rights or protections of an individual 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 (42 U.S.C. 12112), or under the
Rehabilitation Act of 1973 (29 U.S.C. 701 et seq.);
(2)(A) limit the rights or protections of an individual to
bring an action under this title against an employer,
employment agency, labor organization, or joint labor-
management committee for a violation of this title; or
(B) establish a violation under this title for an employer,
employment agency, labor organization, or joint labor-
management committee of a provision of the amendments made by
title I;
(3) limit the rights or protections of an individual under
any other Federal or State statute that provides equal or
greater protection to an individual than the rights or
protections provided for under this title;
(4) apply to the Armed Forces Repository of Specimen
Samples for the Identification of Remains;
(5) limit or expand the protections, rights, or obligations
of employees or employers under applicable workers'
compensation laws;
(6) limit the authority of a Federal department or agency
to conduct or sponsor occupational or other health research
that is conducted in compliance with the regulations
contained in part 46 of title 45, Code of Federal Regulations
(or any corresponding or similar regulation or rule); and
(7) limit the statutory or regulatory authority of the
Occupational Safety and Health Administration or the Mine
Safety and Health Administration to promulgate or enforce
workplace safety and health laws and regulations.
SEC. 210. MEDICAL INFORMATION THAT IS NOT GENETIC
INFORMATION.
An employer, employment agency, labor organization, or
joint labor-management committee shall not be considered to
be in violation of this title based on the use, acquisition,
or disclosure of medical information that is not genetic
information about a manifested disease, disorder, or
pathological condition of an employee or member, including a
manifested disease, disorder, or pathological condition that
has or may have a genetic basis.
SEC. 211. REGULATIONS.
Not later than 1 year after the date of enactment of this
title, the Commission shall issue final regulations in an
accessible format to carry out this title.
SEC. 212. AUTHORIZATION OF APPROPRIATIONS.
There are authorized to be appropriated such sums as may be
necessary to carry out this title (except for section 208).
SEC. 213. EFFECTIVE DATE.
This title takes effect on the date that is 18 months after
the date of enactment of this Act.
TITLE III--MISCELLANEOUS PROVISION
SEC. 301. SEVERABILITY.
If any provision of this Act, an amendment made by this
Act, or the application of such provision or amendment to any
person or circumstance is held to be unconstitutional, the
remainder of this Act, the amendments made by this Act, and
the application of such provisions to any person or
circumstance shall not be affected thereby.
The committee amendment in the nature of a substitute was agreed to.
The amendment (No. 1824) was agreed to.
(The amendment is printed in today's Record under ``Text of
Amendments.'')
Mr. FRIST. Mr. President, this legislation and the unanimous consent
that was just obtained signifies an important accomplishment of this
body but an accomplishment that resulted after about 6 years of work.
As with so much important legislation, I think we sometimes take for
granted how much work it takes to get to a certain point. Then when we
present the bill, debate the bill, and then pass the bill, we move very
quickly on to other issues.
What the unanimous consent just said was that we will be voting on
this Tuesday when we get back from recess; that all time for debate and
discussion on this particular issue, which I should add over the last 6
years has been debated a lot on this floor, will have been exhausted.
For more than 6 years, Members of this body have worked on this
issue. I have worked with Senator Olympia Snowe for about 5\3/4\ years,
along with Senators Jeffords, Enzi, Gregg, Hagel, Collins, and DeWine
on this issue of genetic nondiscrimination. Today, with the invaluable
contributions of Senators Daschle and Kennedy, we bring to the Senate
floor this solid, important, significant legislation that, if I had to
summarize, I would say provides individuals, citizens, patients, with
strong protections against the potential of genetic discrimination in
health insurance.
I especially want to take this opportunity to commend the chairman of
the Health, Education, Labor and Pensions Committee, Chairman Judd
Gregg, for his leadership on this issue. In large part, it is due to
his passion and commitment to this issue, to the principle of fairness
and of equity, which has driven this process forward.
I also commend President Bush for his dedication in ensuring strong
protections against genetic discrimination and for bringing attention
to this critical matter.
When we began work on this issue many years ago, we were looking
ahead at what we anticipated, which was the anticipation of the
decoding of the human genome. At that time, we looked to the future. We
wanted to preempt potential problems. Yes, it has taken 6 years, but
finally with passage a week from next Tuesday we can be satisfied that
we accomplished that goal set out 6 years ago.
This decoding of the human genome, which is about 3 billion bits of
information that we did not have 15 years ago that we have now, has
been accomplished. In fact, it was this year that scientists, working
in collaboration with the National Human Genome Research Institute at
the National Institutes of Health, published a final draft documenting
the sequence of the entire human genetic code.
The publication of this final draft occurred more than 2 years ahead
of schedule and almost 50 years to the day from the historic
publication by Dr. James Watson and Dr. Francis Crick of DNAs double
helix.
This dazzling accomplishment has begun to usher in a whole new era of
medical understanding. It has already begun to expand our understanding
of human development and health, as well as disease. For example, the
discovery of disease genes holds great promise. Based on this
discovery, scientists may be able to design drugs to treat specific
genes and genetic defects. Organs and tissues may be specifically
engineered for use in transplantation. Preventive care will be based in
part on genetic testing.
This explosion of knowledge, these tremendous advances in science and
technology, are also fraught with risk, which this legislation will
minimize.
When I first joined Senator Snowe in this effort several years ago,
at that point in time almost a third, one out of three, of the women
offered a test for breast cancer risk at the National Institutes of
Health declined the test. The reason they gave at that time for
declining the test was that the result might in some way be made
available to an insurance company which would then use that data, that
information, to discriminate against them in whether health insurance
would be issued to them.
I think it is a tremendous example of the danger of having a threat
of discrimination, preventing one from getting a test that might be
useful to them. Thus, that example led me to strongly believe then, and
I do now, that we must protect people from the threat of genetic
information in any way being used against them. That is a practical
responsibility. It is a moral responsibility and it is one with this
legislation that this body speaks to directly.
Simply stated, if unchecked, the fear of genetic discrimination would
have the potential of keeping people from participating in very useful
research studies. It had the potential for keeping people from taking
advantage of new genetic technologies, and it had the potential of
keeping an individual from having the opportunity to obtain information
that demonstrated that they are not at risk for a potential genetically
determined disease.
The fear of genetic discrimination has the potential to prevent
citizens from making informed health decisions for themselves or their
loved ones.
Congress, of course, has a rich history in battling against
discrimination, most notably through the landmark 1964 Civil Rights
Act. We think also of the 1990 Americans With Disabilities Act and the
Health Insurance Portability and Accountability Act. The legislation
before us now extends those very same protections to citizens who have
genetic markers, a move that, ultimately, I believe, through this
legislation, will allow us to save lives.
[[Page S12417]]
Genetic research, this unraveling of the genetic code, genetic
testing will undoubtedly unleash tremendous advances to the benefit of
mankind--thrilling advances, possible cures to illnesses today that
seem vexing, that we do not fully understand. The potential medical
advances from our knowledge of the human genome will be more dramatic
than any of the advances that I had the opportunity to directly
participate in over 20 years in the practice of medicine--just from
this single unraveling of the genetic code.
As we greet the future, as we look at new technology, this is just
one example of this body acting proactively, acting preemptively, so
that such potential use in a discriminatory fashion of medical advances
is kept from hurting the American people. We must take care to protect
our body politic, and this legislation does just that. I am pleased by
the progress we have made thus far, and I do congratulate each of my
colleagues on their dedication to this issue over the last several
years.
This legislation stands squarely on our time-tested civil rights laws
establishing comprehensive, equitable, fair, consistent, and reasonable
protections. I strongly support this bill, and I look forward to its
swift passage when we vote on Tuesday, following our recess.
Mr. GREGG. Mr. President, this year we celebrated the 50 year
anniversary of the now fabled discovery by Watson and Crick of the
double helix. And this year the scientists at the NIH Human Genome
Project completed the sequencing of human DNA.
These are major historical developments that will permanently change
the course of biological science. The color of our eyes and the
treatment of disease are now understood through the lens of genetics.
As the science has progressed, so too have reservations with what we
will do with this new information we are uncovering. Unlocking our
genetic code unleashes new power. And power produces new
responsibilities in protecting the privacy of our genetic information
and protecting it from misuse.
Scientific advances in field of genetics hold great promise for
medical prevention of new treatments and therapies. However, because
our public policies lag behind the science, the promise of the Human
Genome Project is going unfulfilled. Individuals are afraid to get
genetic tests or seek genetic counseling out of fear that they will
lose their health insurance or face discrimination in their employment.
After 6 years, numerous hearings, and hours of deliberation, I am
pleased the Senate is finally taking up this important legislation,
which was unanimously reported out of the Health, Education, Labor, and
Pensions Committee on May 21, 2003. I am also pleased that the first
civil rights legislation adopted under my chairmanship deals with an
issue of truly 21st century concerns. This is the first civil rights
act of the 21st century.
Genetic discrimination is an issue that affect all Americans.
Everyone has genes. Everyone has hereditary medical traits. It's a non-
partisan issue. This is reflected in the fact that this legislation is
truly a bipartisan product. For more than a year, the HELP Committee
has worked hard to marry together two major pieces of legislation--one
sponsored by Senators Snowe/Frist/Jeffords and the other sponsored
Senators Daschle and Kennedy.
This legislation established in Federal law basic legal protections
that prohibit discrimination in health insurance or employment based on
genetic information.
A key component of the legislation is its privacy provisions.
Although current law already contains medical privacy rules covering
genetic information, this legislation addresses some additional
concerns and closes loopholes that are unique to genetics. For
instance, it protects the privacy of genetic information at work and
prohibits the use of genetic information in health insurance
underwriting.
This bill prohibits an employer from making employment decisions--
hiring, firing, etc.--based on genetic information, or even that fact
than an individual or family member requested or received genetic
services.
This bill prohibits health insurance plans from denying eligibility
or enrollment in the health plan based on genetic information. And it
prohibits health insurance plans from charging higher premiums based on
an individual's--or his or her family member's--genetic information.
Most importantly, the legislation recognizes that all individuals,
whether they are healthy or sick, and all medical information, whether
genetic or otherwise, should be afforded the same protections under
law.
While genetic discrimination may not be widespread at this point in
time, this legislation ensures that discriminatory practices will never
become common practice. From the past we have learned that employees,
employers, insurers and others all work best together when the rules
are clear and opportunities for personal achievement and health are
available. This legislation tells everyone what is expected of them and
avoids the trip wires and uncertainty of some of our existing laws.
Any concerns about new regulations on employers or health plans are
far outweighed by the benefits of scientific advances that will further
revolutionize the medical field. With no silver bullet solution in
sight to cure what ails our expensive and troubled health care system,
I believe all stakeholders will welcome reasonable legislation that
fosters medical advances that can lead to prevention and cure disease.
It is my hope that the bipartisan spirit that brought the parties
together to craft this historic legislation will continue as we seek to
realize the full potential of the human genome project.
The PRESIDING OFFICER. Without objection, S. 1053 is considered read
a third time.
Mr. FRIST. Mr. President, I yield back all time on both sides, and I
ask the bill be set aside.
The PRESIDING OFFICER. Without objection, it is so ordered.
____________________