Toward Justice and Community Empowerment in Genomics Studies on Sensitive Traits

IF 2.3 3区 哲学 Q1 ETHICS Hastings Center Report Pub Date : 2024-12-21 DOI:10.1002/hast.4930
Heini M. Natri, Carolyn Riley Chapman
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Abstract

Community engagement and participatory research have been appropriately employed to increase the relevance, rigor, and acceptability of all types of research, but these approaches may be particularly important in genomics and biomedical research on sensitive traits such as neurodevelopmental, psychiatric, and behavioral ones. Here, we provide an overview of past and ongoing efforts in community engagement in genomics studies and consider successes and opportunities for further improvement. Informed by this knowledge as well as one of the author's experiences, we set out a vision for a more equitable and collaborative genomics where wider communities, including social, ethnic, and other communities that share a particular trait, are included in the research as peers and collaborators, not solely as objects of study.

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敏感性状基因组学研究的正义与社区赋权
社区参与和参与式研究已被适当地用于增加所有类型研究的相关性、严谨性和可接受性,但这些方法在基因组学和生物医学研究中对神经发育、精神病学和行为等敏感特征尤为重要。在这里,我们概述了过去和正在进行的社区参与基因组学研究的努力,并考虑了成功和进一步改进的机会。根据这些知识以及作者的一个经验,我们提出了一个更加公平和协作的基因组学愿景,在这个愿景中,更广泛的社区,包括社会、种族和其他具有特定特征的社区,作为同伴和合作者被包括在研究中,而不仅仅是作为研究对象。
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来源期刊
Hastings Center Report
Hastings Center Report 医学-卫生保健
CiteScore
3.50
自引率
3.00%
发文量
99
审稿时长
6-12 weeks
期刊介绍: The Hastings Center Report explores ethical, legal, and social issues in medicine, health care, public health, and the life sciences. Six issues per year offer articles, essays, case studies of bioethical problems, columns on law and policy, caregivers’ stories, peer-reviewed scholarly articles, and book reviews. Authors come from an assortment of professions and academic disciplines and express a range of perspectives and political opinions. The Report’s readership includes physicians, nurses, scholars, administrators, social workers, health lawyers, and others.
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