[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.).
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