The stigma of seriousness: views of genome editing scientists and policy professionals on defining serious disease.

In international policy discussions, "serious disease" is frequently used as a criterion for appropriate uses of human genome editing technology, despite the lingering imprecision of its definition and its potential to stigmatize those with genetic conditions. Drawing from interviews conducted with genome editing scientists and members of governance groups attempting to influence policy, our findings provide empirical evidence of the lack of shared definitions of serious disease and highlight challenges of relying on the term. The difficulty in defining serious disease among those influencing the translation of genome editing research points to the need to recognize community context and lived experiences as part of the measurement of seriousness. This is particularly true when considering that for some diseases, the development of therapeutic gene editing may introduce or exacerbate stigma or discrimination for those with the conditions. Including the perceptions of serious disease among those with lived experience of genetic conditions can help guide ethical policies and enable the genome editing community to avoid imposing the views of those in power as to what constitutes serious.