Whether, when, and how to communicate genetic risk to minors: 'I wanted more information but I think they were scared I couldn't handle it'.

摘要: Genetic test results are often relevant not only to persons tested, but also their children. Questions of whether, when, and how disclose parental children, particularly minors, can be difficult for parents navigate. Currently, limited data available on these questions from the perspective minors. In this qualitative study, semi-structured interviews were conducted with affected by or at risk hereditary cancer (N = 17) Huntington's disease (N = 14) mature minor children aged 15-17 (N = 34). Parents minors interviewed separately. counselors (GCs; N = 19) interviewed. Most wanted protect genetic information (GRI) feared would able handle GRI. However, most reported they did receive enough wished parent was more forthcoming. recommended taking time process one's own before communicating communicate GRI in an honest, hopeful way. GCs felt additional resources about various conditions needed. This study includes experiences perspectives a well-informed cohort, should taken into careful consideration parents, GCs, others who faced