WASHINGTON, Jan. 17 (AScribe Newswire) -- The Coalition for Genetic Fairness applauded President Bush's comments today at NIH. The President said, "I really want to make it clear to the Congress that I hope they pass legislation that makes genetic discrimination illegal." Becky Fisher, an advocate present at the meeting at NIH, spoke about her own family's struggle with inherited cancer, said, " ... as you listen, please consider my story but one example among many about an incredible journey that has led right to the very edge of the frontiers of modern medicine." She went on to say, "Last night HR 493 was introduced in the House with 143 co-sponsors. This bill represents all that is right with America. Please support it once again for the sake of those of us here at the outpost who have given their blood and are trying to pave the way for the health of all Americans."
The Coalition has worked for over a decade for legislation that would eliminate the misuse of genetic information. This misuse has restricted individuals' access to health information and clinical trials. Fear of the misuse of genetic information limits access to genetic tests. The inability to utilize effective genetic tests hinders individuals' ability to learn important medical information to use to proactively manage their health. Evidence of employers and insurers discriminating against people whose genes predisposed them to particular diseases and conditions is growing. Studies have shown that fear of discrimination also causes a large numbers of people to opt out of clinical trials. This lack of participation in research has a negative impact on researchers, clinicians, and industry, slowing the research and development process for targeted drugs and treatments.
"We are grateful for the hard work of the co-sponsors of the Genetic Information Nondiscrimination Act in the House and the Senate. We look forward to the Bill's passage early this year," said Sharon Terry, President and CEO of Genetic Alliance, and President of the Coalition.
ABOUT THE COALITION FOR GENETIC FAIRNESS
The Coalition for Genetic Fairness is a coalition of advocacy organizations, health professionals and industry leaders working to: Educate Congressional policymakers and staff about the importance of legal protections of genetic information; Ensure passage of meaningful genetic information non-discrimination legislation; Stimulate interest in and dialogue around advances in genetic technology. The Coalition is led by: Genetic Alliance, Affymetrix, American Academy of Pediatrics, American Society of Human Genetics, Hadassah, National Society of Genetic Counselors, National Workrights Institute.
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CONTACT: Sharon F. Terry, 202-966-5557 x201, sterry@geneticalliance.org
Media Contact: See above.
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