Hastings Cent Rep. 2023 Mar;53 Suppl 1:S50-S65. doi: 10.1002/hast.1478.
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.
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。在本文中，我们描述了一项努力，即让公众参与关于社会和行为基因组学（SBG）研究的风险、潜在利益和道德责任的规范性讨论。我们反思了让公众参与规范学术研究可能会带来什么，以及可能不会带来什么，并总结了关于公众对 SBG 研究的风险和潜在利益以及此类研究的负责任的进行和沟通的看法。我们还为对让公众参与他们的研究感兴趣的生物伦理学家提供了一些程序性的经验教训。
