Genetic risk communication: experiences of adolescent girls and young women from families with fragile X syndrome.

摘要: Little is known about how and what genetic risk information parents communicate to their children even less hear remember. To address this void, we explored was learned, given who primarily provided adolescent girls young adult women in families with fragile X syndrome. We three levels of knowledge: learning that syndrome an inherited disorder, they could be a carrier, for those had been tested, actual carrier status. These data were collected as part study also self concept age preferences when inform risk. Those findings have presented separately. The purpose paper present the communication data. Using multi-group cross-sectional design focused on ages 14–25 years from previously diagnosed syndrome, 1) knew carriers (n = 20), 2) noncarriers (n = 18), or 3) at-risk (n = 15). For all stages majority participants informed by family member. identified different styles: open, sought information, indirect. content remembered conversations varied based stage being disclosed well girls’ knowledge her own Girls tested status more likely report open pattern than only at-risk.