[Congressional Record Volume 143, Number 104 (Tuesday, July 22, 1997)]
[Senate]
[Pages S7863-S7864]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]

      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:

                                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

[[Page S7864]]

     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.).
                                 ______