[Congressional Bills 105th Congress]
[From the U.S. Government Publishing Office]
[H.R. 2198 Introduced in House (IH)]
105th CONGRESS
1st Session
H. R. 2198
To establish limitations with respect to the disclosure and use of
genetic information in connection with group health plans and health
insurance coverage, to provide for consistent standards applicable in
connection with hospital care and medical services provided under title
38 of the United States Code, to prohibit employment discrimination on
the basis of genetic information and genetic testing, and for other
purposes.
_______________________________________________________________________
IN THE HOUSE OF REPRESENTATIVES
July 17, 1997
Mr. Stearns (for himself, Mr. Armey, Mr. Bishop, Mr. Brown of Ohio, Mr.
Canady of Florida, Mr. Davis of Virginia, Mr. DeFazio, Mr. Duncan, Mr.
Faleomavaega, Mr. Farr of California, Mr. Foley, Mrs. Fowler, Mr.
Gekas, Mr. Gillmor, Mr. Gilman, Mr. Gonzalez, Mr. Green, Mr. Herger,
Mr. Hyde, Mrs. Johnson of Connecticut, Mr. Kennedy of Massachusetts,
Ms. Lofgren, Mr. McCollum, Mr. McHugh, Ms. McKinney, Mr. Nadler, Mr.
Oberstar, Mr. Oxley, Mr. Sensenbrenner, Mr. Shadegg, Mr. Smith of New
Jersey, Mr. Stump, Mr. Taylor of North Carolina, Mr. Traficant, Mr.
Upton, Mr. Waxman, Mr. Weldon of Florida, and Ms. Woolsey) introduced
the following bill; which was referred to the Committee on Commerce,
and in addition to the Committees on Government Reform and Oversight,
Education and the Workforce, and Veterans' Affairs, for a period to be
subsequently determined by the Speaker, in each case for consideration
of such provisions as fall within the jurisdiction of the committee
concerned
_______________________________________________________________________
A BILL
To establish limitations with respect to the disclosure and use of
genetic information in connection with group health plans and health
insurance coverage, to provide for consistent standards applicable in
connection with hospital care and medical services provided under title
38 of the United States Code, to prohibit employment discrimination on
the basis of genetic information and genetic testing, and for other
purposes.
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 Privacy and
Nondiscrimination Act of 1997''.
SEC. 2. PROHIBITION OF HEALTH INSURANCE DISCRIMINATION ON THE BASIS OF
GENETIC INFORMATION.
(a) Group Coverage.--
(1) Amendments to public health service act.--
(A) Inclusion of genetic testing in
nondiscrimination requirements.--Section 2702(a)(1)(F)
of the Public Health Service Act (42 U.S.C. 300gg-
1(a)(1)(F)), as added by section 102(a) of Health
Insurance Portability and Accountability Act of 1996,
is amended by inserting ``(or a request for, or receipt
of, genetic information or a genetic test)'' after
``genetic information''.
(B) Prohibitions against use and disclosure of
genetic information.--Subpart 2 of part A of title
XXVII of the Public Health Service Act, as amended by
section 703(a) of Public Law 104-204, is amended by
adding at the end the following new section:
``SEC. 2706. PROHIBITIONS AGAINST USE AND DISCLOSURE OF GENETIC
INFORMATION.
``(a) Prohibition of Use of Genetic Information.--A group health
plan, and a health insurance issuer offering health insurance coverage
in connection with a group health plan, may not use genetic information
to reject, deny, limit, cancel, refuse to renew, establish differential
rates or premium payments for, or otherwise affect benefits provided
under the plan or health insurance coverage offered in connection with
the plan.
``(b) Prohibition of Disclosure of Genetic Information.--
``(1) In general.--Except as provided in paragraph (2),
regardless of the manner in which genetic information was
received, or of the source of such information, including
information received from an individual, a health insurance
issuer in connection with health insurance coverage offered in
connection with a group health plan and a group health plan may
not disclose or be compelled (by subpoena or any other means)
to disclose genetic information about an individual unless such
disclosure is specifically authorized by the individual
involved or the legal representative of the individual through
a written authorization which includes a description of the
information being disclosed, the name of the individual or
entity to whom the disclosure is being made, and the purpose of
the disclosure.
``(2) Exceptions.--Notwithstanding paragraph (1), genetic
information concerning an individual may be disclosed if such
disclosure--
``(A) is authorized under Federal or State criminal
laws relating to the identification of individuals, or
as is necessary for the purpose of a criminal or death
investigation, a criminal or juvenile proceeding, an
inquest, or a child fatality review by a
multidisciplinary child abuse team;
``(B) is required under the specific order of a
Federal or State court;
``(C) is authorized under Federal or State law for
the purpose of establishing paternity; or
``(D) is for the purpose of identifying bodies.
``(3) Application of subsection.--The prohibitions of this
subsection shall apply to any redisclosure by any entity after
another entity has disclosed the genetic information.''.
(C) 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 new paragraph:
``(15) Genetic information; genetic test.--
``(A) Genetic information.--The term `genetic
information' with respect to an individual means
information about the genes of the individual or a
member of the individual's family or about any gene
products or inherited characteristics that may derive
from the individual or a member of the individual's
family.
``(B) Genetic test.--The term `genetic test' means
a test for determining the presence or absence of
genetic characteristics in an individual, including
tests of nucleic acids such as DNA, RNA, and
mitochondrial DNA, chromosomes, or proteins in order to
diagnose a genetic characteristic.''.
(D) Conforming amendment.--Section 2723(c) of such Act (42
U.S.C. 300gg-23(c)), as amended by section 604(b)(2) of Public
Law 104-204, is amended by striking ``section 2704'' and
inserting ``sections 2704 and 2706''.
(2) ERISA amendments.--
(A) Inclusion of genetic testing in
nondiscrimination requirements.--Section 702(a)(1)(F)
of the Employee Retirement Income Security Act of 1974
(29 U.S.C. 1182(a)(1)(F)), as added by section 101(a)
of Health Insurance Portability and Accountability Act
of 1996, is amended by inserting ``(or a request for,
or receipt of, genetic information or a genetic test)''
after ``genetic information''.
(B) Prohibition against use and disclosure of
genetic information.--Subpart B of part 7 of subtitle B
of title I of the Employee Retirement Income Security
Act of 1974, as amended by section 702(a) of Public Law
104-204, is amended by adding at the end the following
new section:
``SEC. 713. PROHIBITION AGAINST USE AND DISCLOSURE OF GENETIC
INFORMATION.
``(a) Prohibition of Use of Genetic Information.--A group health
plan, and a health insurance insurer offering health insurance coverage
in connection with a group health plan, may not use genetic information
to reject, deny, limit, cancel, refuse to renew, increase the rates of,
or otherwise affect benefits provided under the plan or health
insurance coverage offered in connection with the plan.
``(b) Prohibition of Disclosure of Genetic Information.--
``(1) In general.--Except as provided in paragraph (2),
regardless of the manner in which genetic information was
received, or of the source of such information, including
information received from an individual, a health insurance
issuer in connection with health insurance coverage offered in
connection with a group health plan and a group health plan may
not disclose or be compelled (by subpoena or any other means)
to disclose genetic information about an individual unless such
disclosure is specifically authorized by the individual
involved or the legal representative of the individual through
a written authorization which includes a description of the
information being disclosed, the name of the individual or
entity to whom the disclosure is being made, and the purpose of
the disclosure.
``(2) Exceptions.--Notwithstanding paragraph (1), genetic
information concerning an individual may be disclosed if such
disclosure--
``(A) is authorized under Federal or State criminal
laws relating to the identification of individuals, or
as is necessary for the purpose of a criminal or death
investigation, a criminal or juvenile proceeding, an
inquest, or a child fatality review by a
multidisciplinary child abuse team;
``(B) is required under the specific order of a
Federal or State court;
``(C) is authorized under Federal or State law for
the purpose of establishing paternity; or
``(D) is for the purpose of identifying bodies.
``(3) Application of subsection.--The prohibitions of this
subsection shall apply to any redisclosure by any entity after
another entity has disclosed the genetic information.''.
(C) Definitions.--Section 733(d) of the Employee
Retirement Income Security Act of 1974 (29 U.S.C.
1186(d)) is amended by adding at the end the following
new paragraph:
``(5) Genetic information; genetic test.--
``(A) The term `genetic information' with respect
to an individual means information about the genes of
the individual or a member of the individual's family
or about any gene products or inherited characteristics
that may derive from the individual or a member of the
individual's family.
``(B) The term `genetic test' means a test for
determining the presence or absence of genetic
characteristics in an individual, including tests of
nucleic acids such as DNA, RNA, and mitochondrial DNA,
chromosomes, or proteins in order to diagnose a genetic
characteristic.''.
(D) Conforming amendments.--(i) Section 731(c) of
such Act (29 U.S.C. 1191(c)), as amended by section
603(b)(1) of Public Law 104-204, is amended by striking
``section 711'' and inserting ``sections 711 and 713''.
(ii) Section 732(a) of such Act (29 U.S.C. 1191a(a)), as
amended by section 603(b)(2) of Public Law 104-204, is amended
by striking ``section 711'' and inserting ``sections 711 and
713''.
(iii) The table of contents in section 1 of such Act is
amended by inserting after the item relating to section 712 the
following new item:
``Sec. 713. Prohibition against use and disclosure of genetic
information.''.
(b) Individual Health Insurance.--Part B of title XXVII of the
Public Health Service Act, as amended by section 605(a) of Public Law
104-204, is amended by inserting after section 2751 the following new
section:
``SEC. 2752. PROHIBITION AGAINST USE AND DISCLOSURE OF GENETIC
INFORMATION.
``The provisions of section 2706 shall apply to health insurance
coverage offered by a health insurance issuer in the individual market
in the same manner as it applies to health insurance coverage offered
by a health insurance issuer in connection with a group health plan in
the small or large group market.''.
(c) Treatment of Genetic Information under Programs Administered by
the Department of Veterans' Affairs.--
(1) In general.--Subchapter III of chapter 73 of title 38,
United States Code, is amended by inserting after section 7334
the following new section:
``Sec. 7335. Treatment of genetic information
``The Secretary shall prescribe standards, relating to the use and
disclosure of genetic information in connection with hospital care and
medical services provided under chapter 17 of this title, which are
consistent with the standards applicable under section 2706 of the
Public Health Service Act (relating to prohibitions against use and
disclosure of genetic information) in connection with benefits provided
by group health plans and health insurance coverage offered by health
insurance issuers.''.
(2) Conforming amendment.--The table of sections for
chapter 73 of title 38, United States Code is amended by
inserting after the item relating to section 7334 the following
new item:
``7335. Treatment of genetic information.''.
(d) Effective Dates.--(1) The amendments made by subsection (a)
shall apply with respect to group health plans for plan years beginning
on or after January 1, 1998.
(2) The amendments made by subsection (b) shall apply with respect
to health insurance coverage offered, sold, issued, renewed, in effect,
or operated in the individual market on or after such date.
(3) The amendments made by subsection (c) shall apply with respect
to hospital care and medical services provided on or after such date.
SEC. 3. PROHIBITION OF EMPLOYMENT PRACTICES INVOLVING GENETIC
INFORMATION.
(a) Acquisition and Use of Genetic Information and Genetic
Testing.--
(1) In general.--Subject to paragraph (2), it shall be an
unlawful employment practice for an employer--
(A) to attempt to acquire, to acquire, or to use
the genetic information of an employee or applicant for
employment, or
(B) to require a genetic test of an employee or
applicant for employment,
for the purpose of distinguishing among employees or applicants
for employment or for the purpose of discriminating against or
restricting any right or benefit otherwise due or available to
an employee or applicant for employment, in connection with any
matter relating to employment or employment opportunities,
including terms and conditions of employment, privileges and
benefits for employees, and termination of employment.
(2) Exception.--Paragraph (1) shall not apply with respect
to any act described in paragraph (1) with respect to genetic
information or any requirement described in paragraph (1) for a
genetic test if such act or requirement--
(A) is job-related and consistent with business
necessity, or
(B) is required under Federal or State law.
(b) Nondisclosure and Confidentiality of Genetic Information.--It
shall be an unlawful employment practice for an employer--
(1) to allow access to genetic information of employees to
any person other than persons whose duties or responsibilities
in connection with the employer require access to such
information for purposes consistent with subsection (a), or
(2) to establish or maintain access by the employer to an
employee's genetic information which has been acquired--
(A) by any employee welfare benefit plan
established or maintained by the employer in which such
employee is a participant (or by any other fiduciary of
such a plan), or
(B) by any health insurance issuer offering health
insurance coverage in connection with a group health
plan in which such employee is a participant,
without the prior, written, and informed consent of the employee,
signed by the employee, setting forth the person or persons to whom
access to such information is to be allowed.
(c) Enforcement.--The powers, remedies, and procedures set forth in
sections 705 through 709 of the Civil Rights Act of 1964 shall be the
powers, remedies, and procedures this section provides to any person
alleging a violation of this section.
(d) Definitions.--As used in this section:
(1) Employer; employee.--The terms ``employer'' and
``employee'' have the meanings given such terms, respectively,
in section 701 of the Civil Rights Act of 1964 (42 U.S.C. 2000e).
(2) Employment or employment opportunities.--The term
``employment or employment opportunities'' includes job
application procedures, hiring, advancement, discharge,
compensation, job training, or any other term, condition, or
privilege of employment.
(3) Genetic information.--The term ``genetic information''
with respect to an individual means information about the genes
of the individual or a member of the individual's family or
about any gene products or inherited characteristics that may
derive from the individual or a member of the individual's
family.
(4) Genetic test.--The term ``genetic test'' means a test
for determining the presence or absence of genetic
characteristics in an individual, including tests of nucleic
acids such as DNA, RNA, and mitochondrial DNA, chromosomes, or
proteins in order to diagnose a genetic characteristic.
(5) Other terms.--
(A) Group health plan; health insurance issuer;
health insurance coverage.--The terms ``group health
plan'', ``health insurance issuer'', and ``health
insurance coverage'' have the meanings given such
terms, respectively, in section 733 of the Employee
Retirement Income Security Act of 1974 (29 U.S.C.
1191b(a)).
(B) Employee welfare benefit plan; participant.--
The terms ``employee welfare benefit plan'' and
``participant'' have the meanings given such terms,
respectively, in section 3 of the Employee Retirement
Income Security Act of 1974 (29 U.S.C. 1002).
SEC. 4. FURTHER RECOMMENDATION BY THE NATIONAL BIOETHICS ADVISORY
COMMISSION.
Not later than 1 year after the date of the enactment of this Act,
the National Bioethics Advisory Commission shall prepare and submit to
the appropriate committees of Congress a report containing
recommendations on--
(1) the development and implementation of standards to
provide increased protection for the collection, storage, and
use of identifiable DNA samples and genetic information
obtained from those samples; and
(2) the development and implementation of appropriate
standards for the acquisition and retention of genetic
information in all settings, including appropriate exceptions.
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