{"title":"Toward Justice and Community Empowerment in Genomics Studies on Sensitive Traits","authors":"Heini M. Natri, Carolyn Riley Chapman","doi":"10.1002/hast.4930","DOIUrl":null,"url":null,"abstract":"<p>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.</p>","PeriodicalId":55073,"journal":{"name":"Hastings Center Report","volume":"54 S2","pages":"S56-S65"},"PeriodicalIF":2.3000,"publicationDate":"2024-12-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1002/hast.4930","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Hastings Center Report","FirstCategoryId":"98","ListUrlMain":"https://onlinelibrary.wiley.com/doi/10.1002/hast.4930","RegionNum":3,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q1","JCRName":"ETHICS","Score":null,"Total":0}
引用次数: 0
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.
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.