An Assessment of Genetic Counseling Services for Individuals with Multiple Sclerosis
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ORIGINAL RESEARCH
An Assessment of Genetic Counseling Services for Individuals with Multiple Sclerosis Stephanie Skinner & Colleen Guimond & Rachel Butler & Emily Dwosh & Anthony L. Traboulsee & A. Dessa Sadovnick
Received: 8 November 2013 / Accepted: 3 June 2014 / Published online: 5 July 2014 # National Society of Genetic Counselors, Inc. 2014
Abstract Multiple sclerosis (MS) affects up to 1/500 Canadians. The University of British Columbia MS Clinic (UBC Clinic) is the only MS clinic in Canada (and likely internationally) that routinely offers genetic counseling to patients and their families. A typical session includes the collection of family history and demographic data, discussion of the inheritance of MS, interpretation of family-specific recurrence risks and psychosocial counseling. The aims of this study were to explore patients’: 1) expectations of the genetic counseling session; 2) understanding of the etiology of MS (both pre and post-session); and 3) post-session perceptions of genetic counseling. A two-part questionnaire to assess genetic counseling services was distributed before and after sessions to all consenting patients seen during the period October 1, 2008 to
February 28, 2009 inclusive. Sixty-two completed questionnaires were analysed. Genetic counseling was found to significantly increase the number of individuals who were able to correctly identify the etiology of MS (p
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