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Public Engagement With Brain Organoid Research and Application: Lessons From Genome Editing

Sawai and colleagues (2022) provide an excellent overview of the ethical issues of brain organoid research and application. They point out that regulation for these kinds of endeavors is urgently needed and provide suggestions for developing governance frameworks in this context. The value of involving stakeholders is emphasized, however, without spelling out the specific role of engagement. The last decade has seen an increasing acknowledgement of the importance of involving stakeholders in research and policy-making (Sarewitz 2015). The underlying rationales differ, but it is commonly claimed that engaging with stakeholders will increase public understanding and trust, decision-making can take public values and opinions into account, considering diverse perspectives will improve policies, and that public engagement will contribute to the democratization of decision-making. However, it has also been questioned whether public participation is always implemented in such a way that its full potential is realized. If the involvement of publics is to play a role in the construction of governance frameworks for brain organoids, its implementation should be informed by experiences gained in other contexts. A field that is of particular interest here is the development of genome editing tools, especially for targeted interventions into the human germline as well as for gene drives. In recent years, many efforts have been made to initiate public participation activities in the context of genome editing (Hurlbut, Saha, and Jasanoff 2015; Jasanoff and Hurlbut 2018; Scheufele et al. 2021). In addition, genome editing is similar to brain organoid research in that both technologies can have severe implications for the public, particularly on the conceptual level of how we understand and position ourselves as humans in the world; both are laced with ethical issues and high levels of uncertainty; and just like genome editing, brain organoids can capture the public imagination and lead to unwarranted hype or unjustified fears, which may hinder research, delay therapeutic innovation, and lead to poor governance decisions. Accordingly, we propose five lessons that (public) engagement in research and governance of brain organoids should consider.