Purpose: Individuals affected by genetic conditions are increasingly likely to seek information about inheritance and risk factors from their primary care physicians rather than a geneticist, but several studies suggest that few health care providers are capable of fulfilling that role or are comfortable doing so. Acknowledging that the adoption of new genetics knowledge and technologies is often patient-driven, we asked affected individuals and family members about their experiences in encounters with a variety of nongenetics-trained health care providers. Methods: Staff at the National Coalition for Health Professional Education in Genetics, the Genetic Alliance, and a University of Maryland graduate student in genetic counseling drafted a web-based survey. We recruited study participants from
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