Human germline gene editing (HGGE) introduces heritable genetic alterations to ‘the human germline’ and has the potential to impact clinical practice by providing a way to prevent severe genetic conditions in the embryo. However, the impact would not be limited to clinical practice, as HGGE has the potential to alter human nature and hence raises profound questions such as what it means to be human. Therefore, the technology has elicited a global outcry for public dialogue. Such dialogue pulls decision-making out of the realm of scientists, or standard mechanisms of parliamentary democracy, and offers citizens the opportunity to take responsibility in co-creating the impact of HGGE on society and vice versa.
Internationally, models of citizen deliberation have been proposed, but have hardly been brought into practice. PRESAGE aims to develop and practice a (reusable) model to engage a diversity publics, through the use of music, theatre and arts, in deliberation on concepts and values surrounding HGGE. Various publics and stakeholders will be connected and invited to explore and construct shared values through constructive journalism. These values will subsequently be reflected on in light of ethical, legal and governance frameworks. Joint analyses of key results and insights will be integrated into a roadmap towards societal alignment. As such, PRESAGE executes the recent World Health Organization call to create context-adequate, value-driven and sustainable regulation for HGGE for the Netherlands. Our consortium is well equipped as we have recently organized the Dutch DNA-dialogues. We envision that deliberation on other disruptive technologies could build on experiences from PRESAGE.
