Article
Impact of presymptomatic genetic testing for familial amyotrophic lateral sclerosis.
Genetics in medicine : official journal of the American College of Medical Genetics - 1 Apr 2011
Fanos Joanna H, Gronka Susan, Wuu Joanne, Stanislaw Christine, Andersen Peter M, Benatar Michael
Abstract excerpt
PURPOSE: The Pre-familial Amyotrophic Lateral Sclerosis (Pre-fALS) study is a longitudinal study of individuals potentially at risk for developing familial amyotrophic lateral sclerosis. Our goals were to (1) explore participants' decisions of whether to learn results of presymptomatic testing or not; (2) understand the psychosocial impact of these decisions; and (3) assess preferences for receiving results by...
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