Harvard Medical School, Boston, MA, USA.
Division of General Medicine, Beth Israel Deaconess Medical Center, Boston, MA, USA.
J Urban Health. 2022 Oct;99(5):803-812. doi: 10.1007/s11524-022-00664-0. Epub 2022 Jul 25.
Underrepresentation of Black individuals in genetic research is a longstanding issue. There are well-documented strategies to improve the enrollment of Black participants; however, few studies explore these strategies-as well as the barriers and facilitators for participation-by sampling Black people who have previously participated in genetic research. This study explores the decision-making process of Black adults who have participated in genetic research to identify best practices in the recruitment of Black subjects in genetic research. We conducted 18 semi-structured interviews with Black adults with prior research participation in genetic studies housed at an urban academic medical center in the United States of America (USA). An online survey was conducted with the participants to gather demographic data and information on prior research participation. Trust in research was ascertained with the Corbie-Smith Distrust in Clinical Research Index. Two participants scored high levels of distrust using the validated index. Using thematic content analysis, 4 themes emerged from the interviews: (1) Participants are active players in health system, (2) information is power, and transparency is key, (3) therapeutic alliances and study characteristics facilitate participation, and (4) race pervades the research process. The decision to participate in genetic research for the participants in our study was prompted by participants' internal motivations and facilitated by trust in their doctor, trust in the institution, and ease of participation. Most participants viewed their enrollment in genetic research in the context of their own racial identity and the history of medical racism in the USA.
黑人群体在遗传研究中代表性不足是一个长期存在的问题。已经有很多经过充分证明的策略可以用来提高黑人群体参与者的招募率；然而，很少有研究探讨这些策略——以及通过抽样调查以前参与过遗传研究的黑人群体来参与研究的障碍和促进因素。本研究通过探索以前参与过遗传研究的黑人群体的决策过程，旨在确定遗传研究中招募黑人群体的最佳实践。我们在美国一家城市学术医疗中心对以前参与过遗传研究的 18 名黑人群体进行了 18 次半结构化访谈。我们对参与者进行了在线调查，以收集人口统计数据和以前参与研究的信息。研究信任是通过 Corbie-Smith 临床研究不信任指数来确定的。有两名参与者使用经过验证的指数得出了高水平的不信任分数。通过主题内容分析，从访谈中得出了 4 个主题：（1）参与者是医疗体系的积极参与者，（2）信息就是力量，透明度是关键，（3）治疗联盟和研究特征促进了参与，（4）种族贯穿研究过程。在我们的研究中，参与者决定参与遗传研究的原因是他们自身的内在动机，以及对医生、机构的信任和参与的便利性。大多数参与者将他们参与遗传研究的情况置于他们自己的种族身份和美国医学种族主义的历史背景中。
