Genetic counseling for adoptees at risk for specific inherited disorders

We present 5 cases in which family history showed that a child given up for adoption some years earlier was at 50% risk for inheritance of Huntington disease, myotonic dystrophy, myotonic dystrophy, Fabry disease, von Willebrand disease, and Waardenburg syndrome, respectively. In all cases, the biological mothers (the probands) requested that the genetic counseling provided for them and their children be shared with the adoptive family. The decision whether or not to seek out the adoptee was based upon explicit assessment of the potential benefits and potential difficulties involved in contacting the adoptive family and attempting to provide genetic counseling. We have formulated some recommendations for dealing with other families with similar separation of relatives by adoption on the basis of these experiences.