Creating a path to meaningful public participation: the case of heritable human genome editing

Abstract Heritable human genome editing (HHGE) is a controversial technology that raises various ethical, legal and social challenges. There is now a strong consensus, even among scientists, that the governance of HHGE should include public participation; self-governance is not sufficient. Whilst first participatory exercises have emerged over the last couple of years, it is unclear whether they represent meaningful participation. In the first part of this paper, I will introduce a framework that will allow me to define “meaningful” participation more precisely. I will then apply this framework to the case of HHGE to show that what we are currently witnessing is not meaningful participation. In the second part of the paper, I will reflect on what a path to more meaningful public participation could look like. I will discuss some of the key stumbling blocks that have been identified in the literature and argue that they overlook a central factor, namely the power structures within science itself. I will highlight the fundamentally non-democratic structure of science, and argue that this makes it difficult for a tool of direct democracy (i.e., public participation) to get a foothold within science. Part of the path towards meaningful public participation should therefore include a re-shaping of the power structures within science. I will end by reflecting on what such a re-shaping could look like.