Abstract
Within the numerous policy and governance recommendations for human genome editing research, anticipatory public engagement seems universally agreed upon as a vital endeavor. Yet it is unclear whether and how scientists whose research involves genome editing see value in engaging the public in discussions of genome editing research governance. To address this question, we interviewed 81 international scientists who use genome editing in their research. The views of our scientist interviewees about public engagement occupied a broad spectrum from enthusiastic support to strong skepticism. But most scientists’ views landed somewhere in the middle, seeing public engagement as merely informing the public about the science of genome editing. We argue that such a stance reflects the traditional “knowledge-deficit model.” Beyond addressing the operational difficulties of public engagement, many scientists’ adherence to the deficit model is a deeper barrier that needs to be addressed if public engagement is to occur and be successful.
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The participants of this study did not give consent for their data to be shared publicly, so supporting data is not available.
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The work reported in this article was made possible with support from the National Human Genome Research Institute (1R01HG010661-01A1 Cadigan and Juengst, MPIs).
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All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000. Informed consent was obtained from all patients included in the study.
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Waltz, M., Flatt, M.A., Juengst, E.T. et al. Public participation in human genome editing research governance: what do scientists think?. J Community Genet (2024). https://doi.org/10.1007/s12687-024-00701-2
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DOI: https://doi.org/10.1007/s12687-024-00701-2