[Congressional Bills 104th Congress]
[From the U.S. Government Publishing Office]
[S. 1416 Introduced in Senate (IS)]

  1st Session
                                S. 1416

   To establish limitation with respect to the disclosure and use of 
              genetic information, and for other purposes.


_______________________________________________________________________


                   IN THE SENATE OF THE UNITED STATES

                           November 15, 1995

Mr. Hatfield (for himself and Mr. Mack) introduced the following bill; 
 which was read twice and referred to the Committee on Labor and Human 
                               Resources

_______________________________________________________________________

                                 A BILL


 
   To establish limitation with respect to the disclosure and use of 
              genetic information, 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 1995''.

SEC. 2. FINDINGS AND PURPOSES.

    (a) Findings.--Congress finds the following:
            (1) The DNA molecule contains information about an 
        individual's probable medical future.
            (2) Genetic information is uniquely private and personal 
        information that should not be disclosed without the 
        authorization of the individual.
            (3) The improper disclosure of genetic information can lead 
        to significant harm to the individual, including stigmatization 
        and discrimination in areas such as employment, education, 
        health care and insurance.
            (4) An analysis of an individual's DNA provides information 
        not only about an individual, but also about the individual's 
        parents, siblings and children.
            (5) Current legal protections for genetic information, 
        tissue samples and DNA samples are inadequate to protect 
        genetic privacy, and require further attention.
            (6) Laws for the collection, storage and use of 
        identifiable DNA samples and private genetic information 
        obtained from those samples are needed both to protect 
        individual privacy and to permit legitimate genetic research.
    (b) Purposes.--It is the purpose of this Act to--
            (1) define the rights of individuals whose genetic 
        information is disclosed;
            (2) define the circumstances under which an individual's 
        genetic information may be disclosed; and
            (3) protect against discrimination by an insurer or 
        employer based upon an individual's genetic information.

SEC. 3. DEFINITIONS.

    As used in this Act:
            (1) DNA.--The term ``DNA'' means deoxyribonucleic acid.
            (2) DNA sample.--The term ``DNA sample'' means any human 
        biological specimen from which DNA can be extracted, or the DNA 
        extracted from such specimen.
            (3) Employer.--The term ``employer'' has the same meaning 
        given such term in section 3(d) of the Fair Labor Standards Act 
        of 1938 (29 U.S.C. 203(d)).
            (4) Genetic information.--The term ``genetic information'' 
        means the information about genes, gene products or inherited 
        characteristics that may derive from an individual or a family 
        member.
            (5) 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.
            (6) Insurer.--The term ``insurer'' means an insurance 
        company, health care service contractor, fraternal benefit 
        organization, insurance agent, third party administrator, 
        insurance support organization or other person subject to 
        regulation under State insurance laws. Such term includes self-
        funded health plans and health plans regulated under the 
        Employee Retirement Income Security Act of 1974 (29 U.S.C. 1001 
        et seq.).
            (7) Secretary.--The term ``Secretary'' means the Secretary 
        of Health and Human Services.

SEC. 4. REQUIREMENTS FOR DISCLOSURE OF GENETIC INFORMATION.

    (a) Prohibition.--
            (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, an entity 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;
                    (D) is for the purpose of furnishing genetic 
                information relating to a decedent to the blood 
                relatives of the decedent for the purpose of medical 
                diagnosis; or
                    (E) is for the purpose of identifying bodies.
    (b) Application of Section.--The prohibitions of this section shall 
apply to any redisclosure by any entity after another entity has 
disclosed the genetic information.

SEC. 5. PROHIBITION ON CERTAIN EMPLOYMENT PRACTICES.

    (a) Discrimination as to Rights or Benefits.--No employer may seek 
to obtain, obtain, or use the genetic information of an employee or a 
prospective employee, or require a genetic test of an employee or 
prospective employee, to distinguish between or discriminate against or 
restrict any right or benefit otherwise due or available to the 
employee or prospective employee.
    (b) 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.

SEC. 6. REQUIREMENTS RELATING TO INSURERS.

    (a) General Prohibition.--An insurer offering health insurance may 
not use genetic information to reject, deny, limit, cancel, refuse to 
renew, increase the rates of, or otherwise affect health insurance.
    (b) Prohibition on Inducement.--With respect to a genetic test 
conducted in accordance with subsection (c), an insurer may not use 
such a genetic test as an inducement for the purchase of insurance.
    (c) Permissibility of Tests.--If an insurer requests that an 
applicant for insurance (other than an applicant for health insurance) 
take a genetic test in connection with an application for insurance, 
the use of the results of such test shall be disclosed to the applicant 
and the insurer shall obtain the specific written authorization of the 
applicant for such disclosure.
    (d) Application.--This section shall apply only to insurance 
policies issued on or after the date of enactment of this Act, and to 
the renewal of policies issued before, on, or after such date of 
enactment.

SEC. 7. FURTHER RECOMMENDATION BY THE NATIONAL BIOETHICS ADVISORY 
              COMMISSION.

    Not later than August 31, 1996, 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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