| |
Based on previous recommendations from the National Action Plan
on Breast Cancer (NAPBC) and the NIH-DOE Working Group on the
Ethical, Legal, and Social Implications (ELSI) of human genome
research, in a 1998 report the Clinton Administration announced
recommendations for future legislation on
Workplace
Discrimination to
ensure that discoveries made possible by the Human Genome Project
are used to improve health and not to discriminate against workers
or their families.
These
recommendations are:
- Employers
should not require or request that employees or potential employees
take a genetic test or provide genetic information as a condition
of employment or benefits.
- Employers
should not use genetic information to discriminate against,
limit, segregate, or classify employees in a way that would
deprive them of employment opportunities.
- Employers
should not obtain or disclose genetic information about employees
or potential employees under most circumstances. Genetic testing
and the use of genetic information by employers should be permitted
in the following situations to ensure workplace safety and health
and to preserve research opportunities. However, in all cases
where genetic information about employees is obtained, the information
should be maintained in medical files that are kept separate
from personnel files, treated as confidential medical records,
and protected by applicable state and federal laws.
- An employer
should be permitted to monitor employees for the effects of
a particular substance found in the workplace to which continued
exposure could cause genetic damage under certain circumstances.
Informed consent and assurance of confidentiality should be
required. In addition, employers may use the results only to
identify and control adverse conditions in the workplace and
to take action necessary to prevent significant risk of substantial
harm to the employee or others.
- The statutory
authority of a federal agency or contractor to promulgate regulations,
enforce workplace safety and health laws, or conduct occupational
or other health research should not be limited.
- An employer
should be able to disclose genetic information for research
and other purposes with the written, informed consent of the
individual.
These
recommendations should apply to public and private-sector employers,
unions, and labor-management groups that conduct joint apprenticeship
and other training programs. Employment agencies and licensing
agencies that issue licenses, certificates, and other credentials
required to engage in various professions and occupations also
should be covered.
Individuals
who believe they have been subjected to workplace discrimination
based on genetic information should be able to file a charge with
the Equal Employment Opportunity Commission, Department of Labor,
or other appropriate federal agency for investigation and resolution.
The designated agency should be authorized to bring lawsuits in
the federal courts to resolve issues that would not settle amicably.
The courts should have the authority to halt the violations and
order relief, such as hiring, promotion, back pay, and compensatory
and punitive damages to the individual. Alternatively, an individual
should be able to elect to bring a private lawsuit in federal
or state court to obtain the same type of relief plus reasonable
costs and attorney's fees. To enforce these protections, the designated
enforcement agency must be given sufficient additional resources
to investigate and prosecute allegations of discrimination.
Francis
Collins
|
|