ArticleThe American journal of bioethics : AJOB2023
Public Engagement through Inclusive Deliberation: The Human Genome International Commission and Citizens' Juries.
Article in The American journal of bioethics : AJOB, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.
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2 citing papers in PubMed.
- Governing with public engagement: an anticipatory approach to human genome editing.Science & public policy · 2024Article
- Points to consider in the development of national human genome editing policy.Cambridge prisms. Precision medicine · 2023Review
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Abstract
In this paper, I take seriously calls for public engagement in human genome editing decision-making by endorsing the convening of a "Citizens Jury" in conjunction with the International Commission on the Clinical Use of Human Germline Genome Editing's next summit scheduled for March 6-8, 2023. This institutional modification promises a more inclusive, deliberative, and impactful form of engagement than standard bioethics engagement opportunities, such as comment periods, by serving both normative and political purposes in the quest to offer moral guidance on gene editing. In examining evidence from the Australian Citizens' Jury on Genome Editing convened in 2021, I argue that Citizens' Juries should work in tandem with governing institutions to preserve the role of expertise while ensuring that the diverse views of the public are incorporated into their final reports as well. First, early inclusivity allows "the people" to hold agenda setting power through helping to set resource priorities. This also makes a downstream deliberative event, such as the called for Global Citizens' Assembly, both more likely to occur and more influential on policy. Second, Jury's diverse composition promises substantive contributions to the Commission's work. Third, Citizens' Juries could help to cultivate the Commission's trustworthiness.
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