[Congressional Bills 106th Congress]
[From the U.S. Government Publishing Office]
[H.R. 2555 Introduced in House (IH)]







106th CONGRESS
  1st Session
                                H. R. 2555

  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 19, 1999

Mr. Stearns (for himself, Mr. Burton of Indiana, Mr. Canady of Florida, 
   Mr. Cook, Mr. DeFazio, Mr. Duncan, Mr. Faleomavaega, Mr. Farr of 
    California, Mr. Foley, Mr. LoBiondo, Mrs. Meek of Florida, Mr. 
  McCollum, Mr. Oxley, Mrs. Roukema, Mr. Sensenbrenner, Mr. Taylor of 
North Carolina, and Mr. Upton) introduced the following bill; which was 
     referred to the Committee on Commerce, and in addition to the 
   Committees on Education and the Workforce, Veterans' Affairs, and 
 Government Reform, 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 1999''.

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 is amended by 
                adding at the end the following new section:

``SEC. 2707. 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)) is amended by striking 
                ``section 2704'' and inserting ``sections 2704 and 
                2707''.
            (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)) 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 is amended by adding at the end the 
                following new section:

``SEC. 714. 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)) is amended by striking 
                ``section 711'' and inserting ``sections 711 and 714''.
                    (ii) Section 732(a) of such Act (29 U.S.C. 
                1191a(a)) is amended by striking ``section 711'' and 
                inserting ``sections 711 and 714''.
                    (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. 714. Prohibition against use and disclosure of genetic 
                            information.''.
    (b) Individual Health Insurance.--Part B of title XXVII of the 
Public Health Service Act is amended by inserting after section 2752 
the following new section:

``SEC. 2753. PROHIBITION AGAINST USE AND DISCLOSURE OF GENETIC 
              INFORMATION.

    ``The provisions of section 2707 shall apply to health insurance 
coverage offered by a health insurance issuer in the individual market 
in the same manner as it applies to health insurance coverage offered 
by a health insurance issuer in connection with a group health plan in 
the small or large group market.''.
    (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 2707 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, 2000.
    (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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