National Council on Disability Document Archive

Bills to ban genetic job discrimination

Posted by: Jamal Mazrui
Date Mailed: Wednesday, July 30th 1997 12:12 PM

               Congressional Record dated Tuesday, July 22, 1997
                                Senate Section
                   ----------------------------------------                    
 
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Remarks by DASCHLE (D-SD) on S. 1045: Genetic Justice Act of 1997
         [CR page S-7863, 69 lines]
 
                  Attributed to DASCHLE (D-SD)
        By Mr. DASCHLE:
 
 
    S. 1045. A bill to prohibit discrimination in employment on the basis of
  genetic information, and for other purposes; to the Committee on Labor and
  Human Resources.
 

                             THE GENETIC JUSTICE ACT
 
 
    Mr. DASCHLE. Mr. President, the advent of testing for genes that may
  indicate a predisposition to disease has presented us with a new series of
  opportunities and challenges. While prior awareness of susceptibility to
  disease offers millions the chance to take preventive measures that will help
  them live healthier and longer lives, there also exists the possibility that
  genetic information will be misused. It is for that reason that I am
  introducing S. 1045, The Genetic Justice Act. This legislation will ensure
  that employees will not suffer adverse employment consequences as a result of
  improper use of genetic information and that employee privacy is protected.
 
    Scientific advances now make it possible to identify genes that may
  indicate a predisposition to disease. For example, tests for genes associated
  with hereditary breast cancer will soon be commercially available. Genetic
  information may prove highly beneficial in areas related to prevention,
  treatment, diet, or lifestyle. While this is profoundly good news for
  patients, it also raises fears regarding how genetic information will be used
  in the workplace. Advances in genetic testing and screening, accelerated by
  the National Institutes of Health Human Genome Initiative, increase
  physicians' ability to detect and monitor chromosomal differences. These
  technologies and their resulting genomic data will enhance medical science,
  but may also lead to discrimination.
 
    Regrettably, many employers may not hire individuals whom they believe will
  require time off or medical treatment at some point in the future due to a
  genetically transmitted disease. This discrimination could result despite the
  fact that genetic testing only indicates that an individual may be
  predisposed to a disease--not whether that disease will develop.
 
    Anecdotal evidence suggests that fear of discrimination already has
  inhibited people who may be susceptible to disease from getting genetic
  testing. In some cases, this means that gene carriers will miss out on early
  diagnosis, treatment or even prevention. If consumers avoid taking advantage
  of available diagnostic tests out of fear of discrimination, they may suffer
  much more serious--and more expensive--health problems in the long run.
 
    We will pay the price in more than increased health care costs if we allow
  genetic information to be used in a discriminatory manner. Discrimination
  based on genetic factors can be as unjust as that based on race, national
  origin, religion, sex, or disability. In each case, people are treated
  inequitably, not because of their inherent abilities, but solely because of
  irrelevant characteristics. Genetic discrimination that excludes qualified
  individuals from employment robs the marketplace of skills, energy, and
  imagination. Finally, genetic discrimination undercuts the Human Genome
  Initiative's fundamental purpose of promoting public health. Investing
  resources in the Genome Initiative is justified by the benefits of
  identifying, preventing, and developing effective treatments for disease. But
  if fear of discrimination deters people from genetic diagnosis or from
  confiding in physicians and genetic counselors, and makes them more concerned
  with job loss than with care and treatment, our understanding of the humane
  genome will be for naught.
 
    Because genetic information could be used unfairly, Congress must expand
  the scope of employment discrimination law to include a ban on genetic
  discrimination. Our bill forbids employers from discriminating in hiring or
  in the terms and conditions of employment, and limits their ability to
  acquire genetic information. In order to acquire such information, an
  employer must show that the information is job-related and that the employee
  has consented to the disclosure.
 
    Now, before the use of genetic information becomes widespread, we must make
  sure that dramatic scientific advances do not have negative consequences for
  the public. We have an historic opportunity to preempt this problem.
 
    Mr. President, I ask unanimous consent that the bill text be printed in the
  Record and hope my colleagues will join me in supporting this important
  legislation.
 
    There being no objection, the bill was ordered to be printed in the Record,
  as follows:
 
----------------------------------------
Text of Measure: S. 1045 [CR page S-7863, 128 lines]
 

                                     S. 1045
 
 
    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 "The Genetic Justice Act".
 

  SEC. 2. DEFINITIONS.
 
 
    In this Act:
 
    (1) Employee; employer; employment agency; labor organization; member.--The
  terms "employee", "employer", "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). The terms "employee" and "member" include an
  applicant for employment and an applicant for membership in a labor
  organization, respectively.
 
    (2) Genetic information.--The term "genetic information", used with respect
  to an individual, means information (including information regarding carrier
  status and information derived from a laboratory test that identifies
  mutations in specific genes or chromosomes, a physical medical examination, a
  family history, and a direct analysis of genes or chromosomes) about a gene,
  gene product, or inherited characteristic that derives from the individual or
  a family member of the individual.
 
    (3) Genetic services.--The term "genetic services" means genetic
  evaluation, genetic testing, genetic counseling, and related services.
 

  SEC. 3. EMPLOYER PRACTICES.
 
 
    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, including an inquiry by
  the individual regarding genetic services;
 
    (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,
  including an inquiry by the individual regarding genetic services; or
 
    (3) to request or require the collection for the employer or disclosure to
  the employer of genetic information with respect to an individual unless the
  employer shows that--
 
    (A) the employer made the request or requirement after making an offer of
  employment to the individual;
 
    (B) the information is job-related for the position in question and
  consistent with business necessity; and
 
    (C) the knowing and voluntary written consent of the individual has been
  obtained for the request or requirement, and the collection or disclosure.
 

  SEC. 4. EMPLOYMENT AGENCY PRACTICES.
 
 
    It shall be an unlawful employment practice for an employment agency to
  fail or refuse to refer for employment, or otherwise to discriminate against,
  any individual because of genetic information with respect to the individual,
  including an inquiry by the individual regarding genetic services.
 

  SEC. 5. LABOR ORGANIZATION PRACTICES.
 
 
    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, including an inquiry by the
  individual regarding genetic services;
 
    (2) to limit, segregate, or classify the members of the organization, or to
  classify 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 would limit the employment opportunities or otherwise
  adversely affect the status of the individual as an employee, because of
  genetic information with respect to the individual, including an inquiry by
  the individual regarding genetic services; or
 
    (3) to cause or attempt to cause an employer to discriminate against an
  individual in violation of this section.
 

  SEC. 6. TRAINING PROGRAMS.
 
 
    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, to
  discriminate against any individual because of genetic information with
  respect to the individual, including an inquiry by the individual regarding
  genetic services, in admission to, or employment in, any program established
  to provide apprenticeship or other training or retraining.
 

  SEC. 7. CONFIDENTIALITY.
 
 
    If an employer, labor organization, or employment agency possesses genetic
  information about an employee, the employer, labor organization, or
  employment agency--
 
    (1) shall maintain the information on separate forms and in separate
  medical files, and treat the information as a confidential medical record,
  except that, if the employee provides knowing and voluntary written consent--
 
    (A) the employer may inform a supervisor or manager of the employee
  regarding a necessary restriction on the work or duties of, or a necessary
  accommodation for, the employee;
 
    (B) the employer may inform first aid and safety personnel (when
  appropriate, within the meaning of section 102(d)(3)(B)(ii) of the Americans
  with Disabilities Act of 1990 (42 U.S.C. 12112(d)(3)(B)(ii))); and
 
    (C) the employer shall provide relevant information to a government
  official investigating compliance with this Act, on request;
 
    (2) shall disclose the information to the employee at the request of the
  employee; and
 
    (3) shall not otherwise disclose the information.
 

  SEC. 8. CIVIL ACTION.
 
 
    (a) In General.--An employee or member of a labor organization may bring an
  action in a Federal or State court of competent jurisdiction against an
  employer, employment agency, labor organization, or joint labor-management
  committee who violates this Act.
 
    (b) Class Actions.--The employee or member may bring the action for and in
  behalf of--
 
    (1) the employee or member; or
 
    (2) the employee or member, and other employees or members of the labor
  organization who are similarly situated.
 
    (c) Remedy.--The court in which the action is brought may award any
  appropriate legal or equitable relief.
 

  SEC. 9. CONSTRUCTION.
 
 
    Nothing in this Act shall be construed to limit the rights or protections
  of an employee or member of a labor organization under the Americans with
  Disabilities Act of 1990 (42 U.S.C. 12101 et seq.).

----------
              H.R.2215 As introduced in the House, July 22, 1997               
                   ----------------------------------------                    
 
                                                                              I
  105th CONGRESS
    1st Session
                                   H. R. 2215
 
  To amend the Fair Labor Standards Act of 1938 to restrict employers in
      obtaining, disclosing, and using of genetic information.
 
 
                         ------------------------------
 
 
                         IN THE HOUSE OF REPRESENTATIVES
                                  July 22, 1997
  Mr. Kennedy of Massachusetts introduced the following bill; which was
      referred to the Committee on Education and the Workforce
 
 
                         ------------------------------
 

                                     A BILL
  To amend the Fair Labor Standards Act of 1938 to restrict employers in
      obtaining, disclosing, and using of genetic information.

                          ==============================
 
 
      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 Nondiscrimination in the Workplace
  Act".


  SEC. 2. GENETIC INFORMATION.
 
      The Fair Labor Standards Act of 1938 (29 U.S.C. 201 et seq.) is amended
  by adding at the end the following:
 
 
                              "GENETIC INFORMATION
 
      "Sec. 20. (a) No employer may obtain from any source genetic information
  about an employee or prospective employee unless authorized by such employee
  or prospective employee in accordance with subsection (b).
 
      "(b) An authorization for the disclosure of genetic information about an
  employee or prospective employee to an employer is valid only if each of the
  following requirements is met:
 
          "(1) The authorization is in writing, signed by the individual making
      the authorization, and dated on the date of the signature.
 
          "(2) The authorization is not on a form used for any other purpose.
 
          "(3) The employer authorized to receive the information is
      specifically named in the authorization.
 
          "(4) The authorization contains an acknowledgment that the individual
      making the authorization has received the statement described in
      subsection (c).
 
      "(c) An employer who wishes to receive genetic information about an
  employee or prospective employee shall provide the employee or prospective
  employee with a written statement of the uses which the employer intends for
  such genetic information.
 
      "(d) If an employer obtains, discloses, or uses genetic information
  without a valid authorization or not in accordance with a statement provided
  under subsection (c), the employee or prospective employee whose genetic
  information was so obtained, disclosed, or used may bring a civil action for
  actual damages and equitable relief.
 
      "(e) Nothing in this section authorizes an employer to obtain, disclose,
  or use genetic information about an employee or prospective employee in
  violation of the Americans With Disabilities Act of 1990 or any other Federal
  or State law that restricts access to, disclosure of, or use of genetic
  information.".



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