Between desire and fear: a qualitative interview study exploring the perspectives of carriers of a genetic condition on human genome editing

Abstract

Human genome editing technologies are advancing at a rapid pace, and their potential disruptive implications lead to ethical and societal questions that cannot be addressed by scientists alone. Further consideration of different stakeholders’ views on human genome editing is crucial to translate society’s needs and values into thoughtful regulations and policies. We therefore explored the views of carriers of autosomal dominant disorders on somatic and heritable genome editing (SGE and HGE) and the role of their (secular or religious) worldviews. This group of stakeholders would be most impacted by the eventual clinical application of genome editing technologies and therefore their views must be taken into account. Ten in-depth semi-structured interviews were conducted, and data were analysed using reflexive thematic analysis. We found an overarching theme: ‘Balancing between the desire to prevent serious diseases in individuals through HGE, and the fear of the harmful impact on society and nature’ and three main themes: ‘The benefits of SGE and HGE for individuals’, ‘the societal consequences of using HGE’, and ‘the consequences of interfering with nature through HGE’. Although the lived experiences of the participants varied, they were positive towards the safe use of SGE regardless of the severity of conditions, and most participants were positive towards the use of HGE but only to prevent severe genetic conditions. A few participants were against using HGE in any case, regardless of the severity of a condition, based on their religious beliefs. However, most participants with either religious or secular worldviews reported similar views on HGE, both regarding their desire to prevent serious genetic disorders and their fear of the impact on society and nature if HGE were implemented more widely. Reflecting on HGE involved complex and often ambivalent views. When engaging different stakeholders, space is needed for ambivalence and the weighing of values.