The science and practice of testing for Huntington's disease
Are there guidelines for genetic testing?
Although complex ethical and practical concerns surround the practice of genetic testing, there are no national laws regarding predictive testing for HD. In the absence of any official or enforceable regulations, guidelines for genetic testing have been developed by the Huntington’s Disease Society of America (HDSA), the Huntington’s Disease Society of Canada, and the International Huntington Association, in conjunction with the World Federation of Neurology Research Group on Huntington’s Chorea. These guidelines are integrated within the information of this chapter. For a complete list of guidelines, click here.
Genetic testing guidelines stress that the decision to undergo genetic testing should only be made under informed consent, ensuring that the individual being tested fully understands the risks and benefits of genetic testing and can make an independent decision. Further, an individual should be able to withdraw from testing at any time. The guidelines also outline specific steps for genetic testing, emphasizing the importance of counseling throughout the entire process. (To read about the steps of the genetic testing process, click here) In addition to general guidelines, laboratory guidelines for genetic testing have been developed by the American College of Medical Genetics and the American Society of Human Genetics. These recommendations call for a standardization of laboratory methods, procedures, and terminology.
Last Modified: 9-13-02
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