Stakeholder Perspectives on Returning Nonactionable Apolipoprotein L1 (APOL1) Genetic Results to African American Research Participants.

IF 1.7 4区哲学 Q2 ETHICS Journal of Empirical Research on Human Research Ethics Pub Date : 2022-02-01 Epub Date: 2021-12-06 DOI:10.1177/15562646211063267

Kathleen M West, Kerri L Cavanaugh, Erika Blacksher, Stephanie M Fullerton, Ebele M Umeukeje, Bessie Young, Wylie Burke

{"title":"Stakeholder Perspectives on Returning Nonactionable Apolipoprotein L1 (APOL1) Genetic Results to African American Research Participants.","authors":"Kathleen M West, Kerri L Cavanaugh, Erika Blacksher, Stephanie M Fullerton, Ebele M Umeukeje, Bessie Young, Wylie Burke","doi":"10.1177/15562646211063267","DOIUrl":null,"url":null,"abstract":"The ethics of returning nonactionable genetic research results to individuals are unclear. Apolipoprotein L1 (APOL1) genetic variants are nonactionable, predominantly found in people of West African ancestry, and contribute to kidney disease disparities. To inform ethical research practice, we interviewed researchers, clinicians, and African American community members (n = 76) about the potential risks and benefits of returning APOL1 research results. Stakeholders strongly supported returning APOL1 results. Benefits include reciprocity for participants, community education and rebuilding trust in research, and expectation of future actionability. Risks include analytic validity, misunderstanding, psychological burdens, stigma and discrimination, and questionable resource tradeoffs.Conclusions:APOL1 results should be offered to participants. Responsibly fulfilling this offer requires careful identification of best communication practices, broader education about the topic, and ongoing community engagement.","PeriodicalId":50211,"journal":{"name":"Journal of Empirical Research on Human Research Ethics","volume":"17 1-2","pages":"4-14"},"PeriodicalIF":1.7000,"publicationDate":"2022-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9053332/pdf/nihms-1756502.pdf","citationCount":"1","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Journal of Empirical Research on Human Research Ethics","FirstCategoryId":"98","ListUrlMain":"https://doi.org/10.1177/15562646211063267","RegionNum":4,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"2021/12/6 0:00:00","PubModel":"Epub","JCR":"Q2","JCRName":"ETHICS","Score":null,"Total":0}

引用次数: 1

Abstract

The ethics of returning nonactionable genetic research results to individuals are unclear. Apolipoprotein L1 (APOL1) genetic variants are nonactionable, predominantly found in people of West African ancestry, and contribute to kidney disease disparities. To inform ethical research practice, we interviewed researchers, clinicians, and African American community members (n = 76) about the potential risks and benefits of returning APOL1 research results. Stakeholders strongly supported returning APOL1 results. Benefits include reciprocity for participants, community education and rebuilding trust in research, and expectation of future actionability. Risks include analytic validity, misunderstanding, psychological burdens, stigma and discrimination, and questionable resource tradeoffs.

Conclusions:APOL1 results should be offered to participants. Responsibly fulfilling this offer requires careful identification of best communication practices, broader education about the topic, and ongoing community engagement.

查看原文

微信好友朋友圈 QQ好友复制链接

本刊更多论文

向非裔美国人研究参与者返回不可操作的载脂蛋白L1 (APOL1)遗传结果的利益相关者观点

将不可操作的基因研究结果返还给个人是否合乎伦理尚不清楚。载脂蛋白L1 (APOL1)遗传变异是不可操作的，主要存在于西非血统的人群中，并导致肾脏疾病的差异。为了告知伦理研究实践，我们采访了研究人员、临床医生和非裔美国人社区成员(n = 76)，了解返回APOL1研究结果的潜在风险和益处。涉众强烈支持返回APOL1结果。好处包括参与者的互惠，社区教育和重建对研究的信任，以及对未来可操作性的期望。风险包括分析有效性、误解、心理负担、污名化和歧视，以及可疑的资源权衡。结论:APOL1结果应提供给受试者。负责任地履行这一承诺需要仔细确定最佳沟通实践，就这一主题进行更广泛的教育，以及持续的社区参与。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

求助全文

约1分钟内获得全文去求助

来源期刊

Journal of Empirical Research on Human Research Ethics 医学-医学：伦理

CiteScore

3.50

自引率

7.70%

发文量

审稿时长

>12 weeks

期刊介绍： The Journal of Empirical Research on Human Research Ethics (JERHRE) is the only journal in the field of human research ethics dedicated exclusively to empirical research. Empirical knowledge translates ethical principles into procedures appropriate to specific cultures, contexts, and research topics. The journal''s distinguished editorial and advisory board brings a range of expertise and international perspective to provide high-quality double-blind peer-reviewed original articles.