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Media KitApril 19, 2001 The Honorable Louise Slaughter Dear Congresswoman Slaughter, The National Society of Genetic Counselors (NSGC) is pleased to endorse the Genetic Nondiscrimination in Health Insurance Act (H.R. 602). The NSGC is the leading voice, authority and advocate for the genetic counseling profession. The NSGC numbers nearly 2,000 members who are masters-level health professionals most of whom provide direct patient care. We have specialized education, training, and experience in both medical genetics and counseling. A decade ago, the NSGC adopted a position statement which voiced our opposition to genetic discrimination: "The NSGC opposes discrimination against an individual with regard to eligibility for or maintenance of employment, insurance coverage or medical benefits on the basis of the results of genetic testing." As a professional organization, we are committed to ensuring that our patients have access to genetic services and genetic testing as part of their medical care and reproductive options. In the era of the decoding of our genome, genetic counseling services will be available to and sought by an ever-increasing number of Americans. Over time, more and more genetic tests and therapies will become available, and health care consumers will have the opportunity to choose which of these are appropriate for them in light of their own specific needs. We believe that it is crucial for the public to feel free to utilize these genetics services, and make their choices without fear of discrimination. It is unfortunate that a number of individuals are choosing not to seek genetics services because of their fear of discrimination. This is continuing to occur even in states that have adopted anti-discrimination legislation. This fear of discrimination can hamper the medical care of individuals and their families, either because it prevents them from obtaining medically useful information or because individuals who undergo genetic testing decide not to share these results with their primary care physicians. Recently, researchers from the University of Virginia conducted a study to determine the reasons why people declined cancer genetic counseling services (please refer to page 25 of the enclosed journal). The researchers identified fear of health insurance discrimination as the greatest barrier to utilization of cancer genetics services. This finding was in spite of a Virginia state law which prohibits genetic discrimination. There swas concern expressed by the interviewees about the enforceability of the Virginia state law, its ability to protect them in other states, and its permanence. Clearly, federal legislation, including penalties for those who break the law, and provisions for the right to litigation, is needed to protect the consumer from the inappropriate use of their genetic information. The NSGC strongly endorses the Genetic Nondiscrimination in Health Insurance and Employment Act (H.R. 602). This comprehensive, enforceable legislation will protect Americans from genetic discrimination in insurance as well as the workplace. It is only when consumers are secure from discrimination that we will benefit fully from the continuing discovery of the secrets housed within our genome. Thank you for your tremendous efforts and leadership on this issue. We look forward to continuing to work with you in the future. Vivian J. Weinblatt, M.S, CGC Katherine Schneider, M.PH, CGC Karen Eanet, M.S., CGC Cheryl Scacheri, M.S., CGC
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