Waltz Margaret, Flatt Michael A, Juengst Eric T, Conley John M, Cadigan R Jean
Department of Social Medicine and Center for Bioethics, University of North Carolina at Chapel Hill, 333 South Columbia Street, Chapel Hill, NC, 27599, USA.
Department of Sociology, Cuyahoga Community College, Cleveland, OH, USA.
J Community Genet. 2024 Jun;15(3):249-257. doi: 10.1007/s12687-024-00701-2. Epub 2024 Feb 14.
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.
在众多关于人类基因组编辑研究的政策和治理建议中，预期性公众参与似乎已成为一项普遍被认可的重要工作。然而，尚不清楚那些研究涉及基因组编辑的科学家是否以及如何看待让公众参与基因组编辑研究治理讨论的价值。为解决这一问题，我们采访了81位在研究中使用基因组编辑技术的国际科学家。我们采访的科学家们对公众参与的看法不一，从热情支持到强烈怀疑都有。但大多数科学家的观点处于中间地带，认为公众参与仅仅是向公众介绍基因组编辑科学知识。我们认为，这种立场反映了传统的“知识 deficit 模型”。除了解决公众参与的操作困难之外，如果要实现并成功开展公众参与，许多科学家对 deficit 模型的坚持是一个需要解决的更深层次障碍。 （注：原文中“deficit model”未给出准确中文释义，暂保留英文）
