Health Equity and the Prevalence Principle in Human Genome Editing

The prevalence principle in human genome editing proposes that in addition to other relevant restrictions, somatic or heritable genome editing should only be permitted if it is restricted to editing genes associated with the development of a serious disease, and to converting such genes to variants that are prevalent in the population and so associated with ‘ordinary’ or ‘normal’ health. In this paper, we critically evaluate this principle with the aim of determining the types of disease-preventing somatic or heritable genome editing - if any - it should govern. We first reconstruct the most promising rationale for this principle, namely, that genome editing is impermissible if it grants people an advantage in a social competition or if it is not socially beneficial. We then argue that the conversion of genes to variants associated with greater than ‘normal’ health may not always yield an advantage in a social competition and, even if it does, should not be prohibited in all circumstances. We argue next that the requirement that inequalities in health be socially beneficial to be permissible is too strict and rests on a misinterpretation of John Rawls’s difference principle, which governs when departures from equal distribution in social and economic benefits are allowable. Finally, we explore whether some version of the prevalence principle could be defended by appealing to a relational conception of health equity, according to which health inequalities are unjust if they undermine people’s standing as equals.

Eric Juengst – Social Medicine – University of North Carolina at Chapel Hill; Jean Cadigan – Social Medicine – University of North Carolina at Chapel Hill; Alexandra Robinson – Public Policy – University of North Carolina at Chapel Hill; Rebecca Walker – Social Medicine – University of North Carolina at Chapel Hill