Key stakeholders’ moral attitudes on somatic gene editing for inherited cardiomyopathy: a qualitative interview study

ELSIcon2024 • Paper • June 12, 2024 

Authors:

Jannieke Simons, MA (she/her/hers) - University Medical Center Utrecht (Netherlands)

Introduction: This paper aims to unravel the diverse array of moral attitudes held by key stakeholders involved in or affected by the development and potential future implementation of a somatic gene editing therapy for inherited cardiomyopathy. Considering the early stage of therapy-development, now is the right time for critical appraisal of, amendments and adaptations to these advancements, and to avoid mere end-of-development-pipeline reflections. 
Method: We expect to conduct a total of around 40 semi-structured in-depth interviews with various stakeholders residing in the Netherlands, Belgium and potentially also the United Kingdom. Five stakeholder groups were identified: (1) patients and carriers (“users”), (2) bench researchers (“developers”); (3) cardiologists (“providers”); (4) pharmaceutical industry personnel (“suppliers”); and (5) public health officials (“regulators”). Topics that will be addressed during the interviews are the desirability of a somatic gene editing therapy for inherited cardiomyopathy, the conditions and considerations for potential future first-in-human trials, and perspectives on fair access to the potential future treatment.
Results: Through thematic analysis of the stakeholders’ interviews, a more comprehensive understanding of the ethical landscape surrounding somatic gene editing therapy for inherited cardiomyopathy will emerge. Also, we will bring forth the similarities and differences in underlying values amongst these five identified stakeholder groups.
Conclusions: This qualitative in-depth interview study will provide valuable insights for further development, first-in-human trial design, and clinical implementation of a somatic gene editing therapy for inherited cardiomyopathy. Moreover, insights from this study will contribute to the identification of unresolved ethical questions in the ever-evolving realm of genomics research. 

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