7284University of Washington, Seattle, WA, USA.
12328Vanderbilt University Medical Center, Nashville, TN, USA.
J Empir Res Hum Res Ethics. 2022 Feb-Apr;17(1-2):4-14. doi: 10.1177/15562646211063267. Epub 2021 Dec 6.
The ethics of returning nonactionable genetic research results to individuals are unclear. Apolipoprotein L1 () 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 ( = 76) about the potential risks and benefits of returning research results. Stakeholders strongly supported returning 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. 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.
将无行动意义的基因研究结果返还给个人的伦理问题尚不清楚。载脂蛋白 L1() 基因变异无行动意义，主要存在于西非血统的人群中，且与肾脏疾病的差异有关。为了为伦理研究实践提供信息，我们采访了研究人员、临床医生和非裔美国社区成员（ = 76），了解返还研究结果的潜在风险和益处。利益相关者强烈支持返还结果。益处包括参与者的互惠、社区教育和重建对研究的信任，以及对未来行动意义的期望。风险包括分析有效性、误解、心理负担、污名化和歧视，以及有疑问的资源权衡。应该向参与者提供结果。负责任地兑现这一承诺需要仔细确定最佳沟通实践，更广泛地了解这一主题，并持续进行社区参与。
