A 'joint venture' model of recontacting in clinical genomics: challenges for responsible implementation

摘要: Advances in genomics often lead healthcare professionals (HCPs) to learn new information, e.g., about reinterpreted variants that could have clinical significance for patients seen previously. A question arises of whether HCPs should recontact these former patients. We present some findings interrogating the views (or parents patients) with a rare or undiagnosed condition how such recontacting might be organised ethically and practically. Forty-one interviews were analysed thematically. Participants suggested 'joint venture' model which efforts are shared HCPs. Some proposed an ICT-approach involving electronic health record automatically alerts them potentially relevant updates. The need rigorous privacy controls transparency who access their data was emphasised. Importantly, highlight lack clarity is symptom wider problem: necessary infrastructure pool genomic responsibly, aggregate it other data, enable patients/parents receive hope our will instigate debate way responsibilities under any joint venture allocated, as well limitations normative implications using ICT solution this intractable problem. As first step delineating setting, we suggest routinely discuss patients/parents, including information trigger HCP initiate recontact, part consent process genetic testing.