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Louise Vetter is the Chief Executive Officer of the Huntington’s Disease Society of America, http://www.hdsa.org/. Bev Heim-Myers is Chief Executive Officer and Executive Director of the Huntington Society of Canada, www.huntingtonsociety.ca. They explain their Societies’ work generally and in protecting the genetic data of families with histories of Huntington’s disease. They discuss genome projects and the benefits and challenges that these create, especially in protecting the privacy of the genetic heritage of families with histories of serious illnesses. They examine ways of overcoming the
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