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Media KitMarch 21, 2003 Senator Judd Gregg Dear Senator Gregg: For over a decade the National Society of Genetic Counselors (NSGC) has advocated against genetic discrimination. Yet fear of genetic discrimination remains one of the greatest barriers to the public’s access to genomic medicine. The NSGC is the leading voice, authority and advocate for the genetic counseling profession. Our membership represents over 2,000 masters-level health professionals, most of whom provide direct patient care. We have specialized education, training, and experience in medical genetics, genetic research and counseling. As a professional organization, we are committed to ensuring that the public has access to genetic counseling and testing free from fear of genetic discrimination. Unfortunately, many individuals do not seek genetic services because they fear genetic discrimination. This fear hampers the medical care of individuals and their families, either because it prevents them from obtaining beneficial medical information or because individuals who undergo genetic testing decide not to share these results with their health care providers. This continues to occur even in states that have adopted anti-discrimination legislation. Clearly, federal legislation is needed to protect consumers from inappropriate use of their genetic information. The NSGC supports of the work of the Senate Health, Education, Labor and Pensions Committee (HELP) in working toward bipartisan legislation that safeguards and protects the rights, privacy and confidentiality of an individual’s genetic information. Genetic information must be protected from misuse similar to any medical information. Provisions for enforcement and the recourse for the misuse of genetic information are necessary, with sufficient penalties to encourage insurers and employers to comply with the laws. The HIPAA and ADA rules are not sufficient to protect the misuse of genetic information. Specifically, insurers in the individual market can today collect and use genetic information to deny coverage and raise premiums. And, while ADA protects those with a disability, protection does not extend to those with a genetic predisposition to a disability. Until such federal legislation is enacted, the vast medical benefits that are the expected consequence of the Human Genome Project will not come to fruition. The NSGC stands ready to assist the HELP Committee with this landmark legislation. Sincerely, Robin L. Bennett, MS, CGC cc: Senator Lamar Alexander, Fax (202) 228-3398
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