Abstract
This article outlines the protocol for a prospective study for virtual deliberative public engagement on heritable genome editing in humans. The study intends to create a platform for a diverse group of 25–30 South Africans to engage with a facilitator and each other on 15 policy questions regarding heritable genome editing, with a focus on: a) the prevention of heritable genetic conditions; b) editing for immunity; and c) editing for enhancement. The aim is to understand the views on these issues so as to inform further research and policy, and to analyse the process and effect of deliberation on opinion. Participants will be expected to study the provided resource materials and pass the entrance exam—aligning with the protocols of the Harvard Personal Genome Project. In this way, the commitment, openness and basic knowledge of the candidates will be tested to ascertain whether they are suitable participants for the deliberative engagement.
Highlights
Following the actions of a rogue scientist in China in 2018 regarding the infamous case of human heritable genome editing, scientists and ethicists called for a global moratorium on the clinical uses of this kind of genome editing until an international framework is established [1]
This section outlines in detail the protocol that will be followed so as to ascertain public opinion on human genome editing through deliberative engagement, and to understand how deliberations affect the permananecy of a change in opinion
This protocol adds to the emerging methodology on virtual deliberative public engagement, which is becoming a norm across academic research due to the global pandemic
Summary
Following the actions of a rogue scientist in China in 2018 regarding the infamous case of human heritable genome editing, scientists and ethicists called for a global moratorium on the clinical uses of this kind of genome editing until an international framework is established [1] Included among these experts were pioneers of the CRISPR-Cas technology itself, such as Dr Feng Zhang and Dr Emanuelle Charpentier. How the dialogue is conducted is a key consideration—for highly technical developments like genome editing, which pose complicated political, social and ethical questions, it is not enough to conduct polls or ask opinions without creating an environment for collective reasoning and reflection.
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