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	Articles & Related Information Genetic Testing © Patricia Foote, December 2000 Genetic tests are available for more than 400 diseases, and tests for more than 330 others are under development, according to GeneTests, a Seattle-based genetic testing resource. More than 175,000 genetic tests were performed in 1996 alone, the last year for which estimates exist, reflecting three consecutive years of 30 percent annual increases. The public (and medical community too) needs to be informed about the issues of genetic testing. A genetic test is different from other medical tests in the following ways: The predictive nature of genetic testing. A positive result indicates that that person is at increased risk for having a specific disorder. It does NOT always mean that that person will get that particular disorder. The private nature of the information. The ramifications for the person and for family members. The implications for reproductive decisions. The lack of knowledge about ways to influence/prevent certain genetic outcomes. The relationship of the test results to self-perception. Genetic testing should never be done without meeting with a genetic counselor and the individual being tested must always sign an informed consent document stating that he/she agrees to the testing. Consumers should be sure they completely understand the process and have given some thought to both a positive and negative test result. How to locate a genetic counselor: Ask your general practitioner for a referral. Contact the genetic counselors association: National Society of Genetic Counselors 233 Canterbury Drive Wallingford, PA 19086 (610) 872-7608 Fax: (610) 872-1192 e-mail: nsgc@aol.com Call your County Medical Society or Health Department. Call the Genetic Alliance 1-(800) 336-GENE for a referral. http://www.geneticalliance.org Look at the Pacific Southwest Regional Genetics Network (PSRGN) web page: http://www.psrgn.org Call your local hospitals, especially the obstetrics or pediatrics departments. In California, call your county’s Regional Center. Questions you may have for your Genetic Specialist: (Reprinted in part with permission from the Pacific Southwest Regional Genetics Network) How does an individual get this condition? What tests are available to see if a person has or carries this condition? What does the diagnosis mean? What is the treatment and follow-up for this condition? What specialists will I need to see? What are the reproductive issues? Where can I get additional information about this condition? Will this diagnosis affect my health insurance? Is there any financial assistance for those who have this condition? What organizations or support groups are helpful? Should other members of the family be tested? If so, who? Are there some confidentiality issues I should be aware of? Send for the booklet: Understanding Gene Testing published by the National Institutes of Health. Order from the Publications Ordering Service at 1-(800) 4-CANCER or Fax order to (301) 330-7968 Write down your own questions .... For further reading on genetic issues: GeneLetter: http://www.geneletter.com Genetics and Disease Prevention update: e-mail to get on listserv: genetics@CDC.GOV GeneWATCH Council for Responsible Genetics 19 Garden St. Cambridge, MA 02138 (617) 868-0870 Patricia Foote is a trainer for Stanford University's "The Chronic Disease Self-Management Course" and is the author of How Are You? Manage Your Own Medical Journey, available from Amazon.com or local bookstores. August 7, 2008 Genworth Insurance Company - Long Term Care | LTC Insurance Quote | Site Map This web site should be considered an advertisement and is not a contract. Products and services mentioned in this web site are meant to be only valid for distribution in the State of Illinois, United States of America. The intent of this website is to gather consumer requests for product information or quotes, and transfer them in a timely manner to a licensed professional who will contact the consumer directly regarding their specific needs.