[Congressional Bills 105th Congress]
[From the U.S. Government Publishing Office]
[H.R. 3299 Introduced in House (IH)]







105th CONGRESS
  2d Session
                                H. R. 3299

  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

                           February 26, 1998

Mrs. Linda Smith of Washington introduced the following bill; which was 
     referred to the Committee on Commerce, and in addition to the 
Committees on 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 ``Family Genetic Privacy and 
Protection Act''.

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. NATIONAL BIPARTISAN COMMISSION ON THE USE OF GENETIC 
              INFORMATION.

    (a) Establishment.--There is established a commission to be known 
as the National Bipartisan Commission on the Use of Genetic Information 
(in this section referred to as the ``Commission'').
    (b) Duties of the Commission.--The Commission shall make 
recommendations with respect to the following:
            (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.
            (2) The development and implementation of appropriate 
        standards for the acquisition and retention of genetic 
        information in all settings, but particularly in clinical 
        settings, including appropriate exceptions.
    (c) Membership.--
            (1) Number and appointment.--The Commission shall be 
        composed of 17 members, of whom--
                    (A) four shall be appointed by the President;
                    (B) six shall be appointed by the Majority Leader 
                of the Senate, in consultation with the Minority Leader 
                of the Senate, of whom not more than 4 shall be of the 
                same political party;
                    (C) six shall be appointed by the Speaker of the 
                House of Representatives, in consultation with the 
                Minority Leader of the House of Representatives, of 
                whom not more than 4 shall be of the same political 
                party; and
                    (D) one, who shall serve as Chairman of the 
                Commission, appointed jointly by the President, 
                Majority Leader of the Senate, and the Speaker of the 
                House of Representatives.
            (2) Expertise.--It is the sense of the Congress that the 
        Commission should include Members with expertise in the 
        following areas:
                    (A) Science and clinical research.
                    (B) Religion.
                    (C) Genetic counseling, and patient advocacy and 
                support.
                    (D) Ethics.
                    (E) Law.
            (3) Deadline for appointment.--Members of the Commission 
        shall be appointed by not later than January 1, 1999.
            (4) Terms of appointment.--The term of any appointment 
        under paragraph (1) to the Commission shall be for the life of 
        the Commission.
            (5) Meetings.--The Commission shall meet at the call of its 
        Chairman or a majority of its members.
            (6) Quorum.--A quorum shall consist of 8 members of the 
        Commission, except that 4 members may conduct a hearing under 
        subsection (e).
            (7) Vacancies.--A vacancy on the Commission shall be filled 
        in the same manner in which the original appointment was made 
        not later than 30 days after the Commission is given notice of 
        the vacancy and shall not affect the power of the remaining 
        members to execute the duties of the Commission.
            (8) Compensation.--Members of the Commission shall receive 
        no additional pay, allowances, or benefits by reason of their 
        service on the Commission.
            (9) Expenses.--Each member of the Commission shall receive 
        travel expenses and per diem in lieu of subsistence in 
        accordance with sections 5702 and 5703 of title 5, United 
        States Code.
    (d) Staff and Support Services.--
            (1) Executive director.--
                    (A) Appointment.--The Chairman shall appoint an 
                executive director of the Commission.
                    (B) Compensation.--The executive director shall be 
                paid the rate of basic pay for level V of the Executive 
                Schedule.
            (2) Staff.--With the approval of the Commission, the 
        executive director may appoint such personnel as the executive 
        director considers appropriate.
            (3) Applicability of civil service laws.--The staff of the 
        Commission shall be appointed without regard to the provisions 
        of title 5, United States Code, governing appointments in the 
competitive service, and shall be paid without regard to the provisions 
of chapter 51 and subchapter III of chapter 53 of such title (relating 
to classification and General Schedule pay rates).
            (4) Experts and consultants.--With the approval of the 
        Commission, the executive director may procure temporary and 
        intermittent services under section 3109(b) of title 5, United 
        States Code.
            (5) Physical facilities.--The Administrator of the General 
        Services Administration shall locate suitable office space for 
        the operation of the Commission. The facilities shall serve as 
        the headquarters of the Commission and shall include all 
        necessary equipment and incidentals required for the proper 
        functioning of the Commission.
    (e) Powers of Commission.--
            (1) Hearings and other activities.--For the purpose of 
        carrying out its duties, the Commission may hold such hearings 
        and undertake such other activities as the Commission 
        determines to be necessary to carry out its duties.
            (2) Studies by gao.--Upon the request of the Commission, 
        the Comptroller General shall conduct such studies or 
        investigations as the Commission determines to be necessary to 
        carry out its duties.
            (3) Cost estimates by congressional budget office and 
        office of the chief actuary of hcfa.--
                    (A) The Director of the Congressional Budget Office 
                or the Chief Actuary of the Health Care Financing 
                Administration, or both, shall provide to the 
                Commission, upon the request of the Commission, such 
                cost estimates as the Commission determines to be 
                necessary to carry out its duties.
                    (B) The Commission shall reimburse the Director of 
                the Congressional Budget Office for expenses relating 
                to the employment in the office of the Director of such 
                additional staff as may be necessary for the Director 
                to comply with requests by the Commission under 
                subparagraph (A).
            (4) Detail of federal employees.--Upon the request of the 
        Commission, the head of any Federal agency is authorized to 
        detail, without reimbursement, any of the personnel of such 
        agency to the Commission to assist the Commission in carrying 
        out its duties. Any such detail shall not interrupt or 
        otherwise affect the civil service status or privileges of the 
        Federal employee.
            (5) Technical assistance.--Upon the request of the 
        Commission, the head of a Federal agency shall provide such 
        technical assistance to the Commission as the Commission 
        determines to be necessary to carry out its duties.
            (6) Use of mails.--The Commission may use the United States 
        mails in the same manner and under the same conditions as 
        Federal agencies and shall, for purposes of the frank, be 
        considered a commission of Congress as described in section 
        3215 of title 39, United States Code.
            (7) Obtaining information.--The Commission may secure 
        directly from any Federal agency information necessary to 
        enable it to carry out its duties, if the information may be 
        disclosed under section 552 of title 5, United States Code. 
        Upon request of the Chairman of the Commission, the head of 
        such agency shall furnish such information to the Commission.
            (8) Administrative support services.--Upon the request of 
        the Commission, the Administrator of General Services shall 
        provide to the Commission on a reimbursable basis such 
        administrative support services as the Commission may request.
            (9) Printing.--For purposes of costs relating to printing 
        and binding, including the cost of personnel detailed from the 
        Government Printing Office, the Commission shall be deemed to 
        be a committee of the Congress.
    (f) Report.--Not later than 18 months after the date of the 
enactment of this Act, the Commission shall submit a report to the 
President and the Congress which shall contain a detailed statement of 
only those recommendations, findings, and conclusions of the Commission 
that receive the approval of at least 11 members of the Commission.
    (g) Termination.--The Commission shall terminate 30 days after the 
date of submission of the report required in subsection (f).
                                 <all>