Wrestling with Public Input on an Ethical Analysis of Scientific Research.
Wrestling with Public Input on an Ethical Analysis of Scientific Research.
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与公众对科学研究伦理分析的意见进行角力。
DOI：
10.1002/hast.1478
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发表时间：
2023
期刊：
影响因子：
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通讯作者：
Parens,Erik
中科院分区：
文献类型：
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作者：
Martschenko,DaphneOluwaseun;Callier,ShawneequaL;Garrison,Nanibaa'A;Lee,SandraSoo-Jin;Turley,Patrick;Meyer,MichelleN;Parens,Erik
生物伦理学家经常呼吁实证研究人员让参与者和社区成员参与他们的研究，但他们自己通常不会让社区成员参与他们的规范研究。在这篇文章中，我们描述了将公众成员纳入关于社会和行为基因组学（SBG）研究的风险、潜在利益和伦理责任的规范性讨论中的努力。我们反思了让公众参与规范性学术研究可能会获得什么，也可能不会获得什么，以及从公众对SBG研究的风险和潜在利益的看法以及此类研究的负责任行为和沟通中获得的经验教训。我们也为其他对公众参与其研究感兴趣的生物伦理学人员提供程序课程。
Bioethicists frequently call for empirical researchers to engage participants and community members in their research, but don't themselves typically engage community members in their normative research. In this article, we describe an effort to include members of the public in normative discussions about the risks, potential benefits, and ethical responsibilities of social and behavioral genomics (SBG) research. We reflect on what might—and might not— be gained from engaging the public in normative scholarship and on lessons learned about public perspectives on the risks and potential benefits of SBG research and the responsible conduct and communication of such research. We also provide procedural lessons for others in bioethics who are interested in engaging members of the public in their research.