The divide so wide: Public perspectives on the role of human genome editing in the US healthcare system

Abstract

We report findings from two open-framed focus groups eliciting informed public opinion about the rapidly developing technology of human genome editing in the context of the US healthcare system. Results reveal that participants take a dim view of the present healthcare system, articulating extensive concerns about the accessibility and affordability of care. They feel that, unless these problems are resolved, they stand little chance of benefiting from any eventual human genome editing treatments. They prioritize improvement in healthcare access well above human genome editing development, and human genome editing regulation and oversight above human genome editing research. These results reveal substantial divergence between public perspectives and expert discourse on human genome editing. The latter attends primarily to the moral permissibility of technical categories of human genome editing research and how to treat human genome editing within existing regulatory and oversight systems rather than broader political-economic and healthcare access concerns. This divergence illustrates the importance of openly framed public engagement around emerging technologies.