Media Kit

October 15, 2003

Speaker Dennis Hastert
House 232 Capitol Building
United States House of Representatives
Washington, DC 20515

Dear Speaker Hastert:

As you are aware, the Senate has passed S. 1053, the “Genetic Information Nondiscrimination Act.” On behalf of the National Society of Genetic Counselors (NSGC), I urge you to schedule immediate House action on S.1053.

The NSGC is the leading voice, authority and advocate for the genetic counseling profession. Our membership represents over 2,100 professionals, who work and provide expertise in areas of patient care, public health, biotechnology, research and industry. We have specialized graduate training and experience in medical genetics and counseling.

As a professional organization, we have witnessed many individuals avoiding genetic services because they fear genetic discrimination. The fear of genetic discrimination prevents individuals and their family from obtaining critical medical information that could prevent future health problems or mitigate potential complications, thereby compromising their medical care. Fear of genetic discrimination also has the potential of preventing people from participating in research studies which could hinder further advancement of knowledge gained from the human genome project.

In addition, the use of genetic testing for common disorders, such as cancer, heart disease and neurological conditions is becoming more widespread. In the future, it is likely that genetic tests will be a routine part of medicine. This makes it even more vitally important to pass strong enforceable protection from genetic discrimination. 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 NSGC strongly supports a proactive approach to preventing discrimination based upon genetic information. We ask you to schedule a vote on S. 1053 before the end of this year. The NSGC is committed to working with you on this issue.

Sincerely,

Dawn C. Allain, MS, CGC
President, National Society of Genetic Counselors
Phone: (414) 266-3047; Email: dallain@chw.org

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