HCR.20.053 – After dialogue comes deliberation: exploring perspectives, considerations and opinion formation regarding human germline gene editing among individuals carrying or at risk of genetic disease

Route: Health care research, sickness prevention and treatment

Cluster question: 081 How will our knowledge of genetics play a role in analysing, screening for, and treating diseases?

Human germline editing is a technology that allows editing the genome of embryos at a very early stage. These edits may remain in the human germline, with a potentially high impact on all humankind. Public discussion often involves imaginative yet intimidating scenarios like the ‘designer baby’, often denounced by scientists as far-fetched. However, these scenarios can also be interpreted as a clear exhibition of public sentiment and a request for public engagement. We are currently conducting the public dialogue about human germline gene editing (GLGE) in the Netherlands; the DNA dialogues. As a consortium we have created a format to contextualize information about germline editing and we employ a strategy that is inclusive for a broad public. Within the dialogue, we enquire about values and needs. As participants listen to and learn from each other, they collectively attribute meaning to human GLGE. The DNA dialogues included a broad variety of subgroups, and there was acceptance among a majority of participants to employ GLGE in case of severe genetic disease. To provide rich context for deeper deliberation, it is time to complement the DNA dialogues with experiences of those living with (the threat of) severe genetic disease. Deliberation is a communication process in which key values and needs are analysed, prioritized, and weighted. Deliberation is necessary to properly align technological developments with societal values and needs and is non-directive. In this study we aim (1) to explore whether individuals at risk or carrying a genetic disease place germline editing in the spectrum of reproductive possibilities, (2) to gain insights into their various moral considerations, thoughts and emotions, and (3) to ascertain how these at-risk or genetic disease carrying individuals may best be enabled to form an opinion, treading the fine line between hope and deception.

Keywords

deliberation, Germline editing, hereditary disease, public engagement, reproductive options, societal alignment

Other organisations

Amsterdam UMC, Erfocentrum, Nemo

Submitter

Organisation Erasmus Medical Centre Rotterdam (EMC)
Name Dr. S. (Sam) Riedijk
E-mail s.riedijk@erasmusmc.nl
Website dnadialoog.nl