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News Releases:
URGENT—FOR IMMEDIATE DISSEMINATION
117 Organizations—Representing Advocates, Health Professionals,
Researchers, Union Workers and Industry—Call for Bipartisan Genetic Nondiscrimination Legislation
Washington
DC, March 24, 2003—On Friday March 21, 2003, the Genetic
Alliance went to Capitol Hill with a strong message for members of the
Senate Health, Education, Labor and Pensions Committee to continue negotiating
to achieve bipartisan genetic nondiscrimination legislation. Board President
Sharon Terry and Executive Director Mary Davidson presented key Republican
and Democratic staffers with a letter co-signed by 117 organizations and
nearly 200 health professionals, researchers, industry, union workers
and advocates and calling for bipartisan action.
Mark-up, re-scheduled last week for March 26th, has been postponed again
to give more time to bipartisan negotiations. Friday¹s discussions underscore
the fact that significant differences on enforcements and privacy continue,
despite staffers¹ hard work to resolve them, and the fact that successful
passage of genetic nondiscrimination legislation on the Senate floor requires
strong bipartisan support. Ms. Terry and Ms. Davidson encouraged staffers
from both parties to consider pragmatic and workable solutions to resolving
these differences. They pledged the expertise of the Genetic Alliance
and co-signed organizations to aid them in this essential task and challenge.
The Genetic Alliance used its vast network of member and affiliated organizations
to put out an urgent call for signatures early last week. The Genetic
Alliance is an international coalition of more than 600 advocacy organizations
representing millions of members dedicated to providing support and resources
to everyone impacted by genetics. Demonstrating their unity and resolve
on this issue, organizations representing consumer advocates, health professionals,
labor unions and biotech companies—in just four days time—raced
to sign a letter that called for the strong, meaningful and reasonable
enforcement protections that citizens need and deserve.
With the 50th anniversary of the discovery of the DNA double helix less
than a month away and after many years of concerted effort to put protections
in place, these 117 organizations recognize that current negotiations
present a unique window of opportunity. In the days to come, the Genetic
Alliance will continue providing resources and support to both Republicans
and Democratic members of the Senate and House who are committed to passage
of bipartisan legislation and to member and affiliate organizations. The
Genetic Alliance is dedicated to bringing the voices of the consumer community
to these issues, based on the principle that ŒMeaningful progress
in policy, health care and research requires the proactive participation
of consumers.¹
The Genetic Alliance is optimistic that the obvious good
will and sustained commitment on both sides of the aisle can result in
the significant bilateral compromises necessary for successful passage
of genetic nondiscrimination legislation. The Genetic Alliance will continue
working hard to ensure that all Americans, regardless of genetic make-up,
receive the clear assurances and strong protections that Federal legislation
alone can provide.
For information about the Genetic Alliance go to http://www.geneticalliance.org and for information about genetic nondiscrimination legislation go to http://www.geneticalliance.org/GND_Respage.html.
Genetic
Alliance Guiding Principles:
Access to health care, education and employment is essential to all individuals,
regardless of genetic make-up.
Meaningful progress in policy, research and health care requires the proactive
participation of consumers.
Updated May 25, 2005
