公众参与人类基因组编辑研究管理:科学家怎么看?

IF 1.5 Q4 GENETICS & HEREDITY Journal of Community Genetics Pub Date : 2024-06-01 Epub Date: 2024-02-14 DOI:10.1007/s12687-024-00701-2
Margaret Waltz, Michael A Flatt, Eric T Juengst, John M Conley, R Jean Cadigan
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引用次数: 0

摘要

在有关人类基因组编辑研究的众多政策和管理建议中,公众的预期参与似乎被普遍认为是一项至关重要的工作。然而,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管理讨论的价值,目前尚不清楚。为了解决这个问题,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。受访科学家对公众参与的看法各不相同,有的热情支持,有的持强烈怀疑态度。但大多数科学家的观点处于中间位置,认为公众参与只是向公众介绍基因组编辑的科学知识。我们认为,这种立场反映了传统的 "知识匮乏模式"。除了解决公众参与的操作困难之外,许多科学家对知识匮乏模式的坚持是一个更深层次的障碍,要想让公众参与发生并取得成功,就必须解决这个问题。
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Public participation in human genome editing research governance: what do scientists think?

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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来源期刊
Journal of Community Genetics
Journal of Community Genetics GENETICS & HEREDITY-
CiteScore
3.30
自引率
5.30%
发文量
54
期刊介绍: The Journal of Community Genetics is an international forum for research in the ever-expanding field of community genetics, the art and science of applying medical genetics to human communities for the benefit of their individuals. Community genetics comprises all activities which identify persons at increased genetic risk and has an interest in assessing this risk, in order to enable those at risk to make informed decisions. Community genetics services thus encompass such activities as genetic screening, registration of genetic conditions in the population, routine preconceptional and prenatal genetic consultations, public education on genetic issues, and public debate on related ethical issues. The Journal of Community Genetics has a multidisciplinary scope. It covers medical genetics, epidemiology, genetics in primary care, public health aspects of genetics, and ethical, legal, social and economic issues. Its intention is to serve as a forum for community genetics worldwide, with a focus on low- and middle-income countries. The journal features original research papers, reviews, short communications, program reports, news, and correspondence. Program reports describe illustrative projects in the field of community genetics, e.g., design and progress of an educational program or the protocol and achievement of a gene bank. Case reports describing individual patients are not accepted.
期刊最新文献
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