Samenvatting

Views of people with a genetic condition are crucial in deliberations on human germline gene editing (HGGE), but their perspectives are at risk to be devalued due to epistemic injustice and insufficient attention for the possible sensitivities surrounding HGGE. This study set out to explore the perspectives of people dealing with a genetic condition regarding HGGE, and the possible sensitivities surrounding this topic. We conducted a 2-phase qualitative interview (N = 29) and focus group study (N = 9) on the perspectives of people with or carrying a genetic condition and family members regarding HGGE. Insights from the interviews were used in the organization of the focus groups. We included 38 persons who have experiences with 18 different genetic conditions. Three main themes were identified: personal deliberation on HGGE, HGGE in the context of reproductive decision making and the impact of HGGE on society. Participants stated discussing the topic was controversial, complicated and overwhelming. An informal setting with peer support helped them to process their thoughts and feelings. This study found three main conclusions. First, the perspectives on HGGE are highly influenced by the perception of a genetic condition as a burden or as part of an identity. Secondly, in the deliberation on HGGE, many participants experienced a conflict between accepting a genetic condition and taking action to mitigate potential harm. Thirdly, the subject and object of the deliberation on HGGE mattered: for whom and what for? Moreover, this study has yielded pragmatic recommendations to accommodate sensitivities around discussing HGGE.