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News Release
NCD #02-352
March 4, 2002
Contact: Mark S. Quigley
202-272-2004
202-272-2074 TTY
mquigley@ncd.gov
National Council on Disability Releases Genetic
Discrimination Legislation Paper
WASHINGTON--The National Council on Disability (NCD)
today released a position paper (http://www.ncd.gov/whatsnew.html)
calling for federal legislation providing strong antidiscrimination
protection to people with genetic predispositions as well as those
with already-manifested disabilities and health conditions.
For a number of years, NCD has recognized the harmful
effects of discrimination based on individuals' genetic information
and supported the need for federal legislation prohibiting genetic
discrimination as well as the enforcement of existing legislation
that may prohibit certain types of genetic discrimination. It has
addressed the issue of genetic discrimination in several reports,
including the following:
- Achieving
Independence: The Challenge for the 21st Century. July
26, 1996 (expressing serious concern about the quandaries and
implications of obtaining and using genetic information; calling
for further examination of the interface of genetic testing practices
with antidiscrimination law and access to health insurance for
people with disabilities).
- National
Disability Policy: A Progress Report. July 26, 1996-Oct.
31, 1997 (noting the potential for discrimination based on genetic
information in employment, health care and other areas, and urging
the President to work with Congress to enact legislation outlawing
genetic discrimination and restricting access to genetic information
by employers, insurance carriers and others).
- National
Disability Policy: A Progress Report. Nov. 1999-Nov. 2000
(applauding the Clinton Administration for issuing an executive
order prohibiting certain types of genetic discrimination by federal
employers, and urging the prompt reintroduction of legislation
prohibiting genetic discrimination by employers and health insurers).
- Promises
to Keep: A Decade of Federal Enforcement of the Americans with
Disabilities Act. June 27, 2000 (supporting the U.S. Equal
Employment Opportunity Commission's position on genetic discrimination
in its guidance on the definition of disability, which considered
an individual discriminated against based on a genetic predisposition
to disease or disability to be a person with a disability protected
by the Americans with Disabilities Act (ADA) by virtue of being
"regarded as" substantially limited in a major life activity;
calling for technical assistance from federal agencies in emerging
areas of ADA policy and enforcement such as genetic discrimination).
NCD's interest in genetic discrimination legislation
stems partly from the fact that the need for this legislation arises
due to narrow judicial interpretations of ADA, and these same interpretations
also create the need for legislation to restore protections for
individuals who have actually developed health conditions. NCD believes
that the concerns of individuals with actual health conditions have
not been fully addressed in the dialogue about legislative proposals
to address genetic discrimination.
According to NCD chairperson Marca Bristo, "Genetic
discrimination by employers and insurers has continued to be a systemic
problem. NCD would agree that genetic information and genetic technology
hold great promise for improving human health. However, the misuse
of genetic information not only excludes qualified people from employment
and without justification denies insurance coverage to people, but
also undercuts the fundamental purposes of genetic research."
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