Division of Quantitative Sciences, Department of Obstetrics and Gynecology, Vanderbilt University Medical Center, Nashville, Tennessee, USA.
Center for Pediatric Precision Medicine, Department of Pediatrics, Vanderbilt University Medical Center, Nashville, Tennessee, USA.
Clin Pharmacol Ther. 2023 Mar;113(3):607-614. doi: 10.1002/cpt.2792. Epub 2022 Nov 24.
Most pharmacogenetic research is conducted in adult, non-pregnant populations of European ancestry. Study of more diverse and special populations is necessary to validate findings and improve health equity. However, there are significant barriers to recruitment of diverse populations for genetic studies, such as mistrust of researchers due to a history of unethical research and ongoing social inequities. Engaging communities and understanding community members' perspectives may help to overcome these barriers and improve research quality. Here, we highlight one method for engaging communities, the Community Engagement Studio (CES), a consultative session that allows researchers to obtain guidance and feedback based on community members' lived experiences. We also provide an example of its use in pharmacogenetic studies. In designing a survey study of knowledge and attitudes around pharmacogenetic testing among children with chronic conditions and pregnant individuals, we sought input from diverse community stakeholders through CESs at Vanderbilt University Medical Center. We participated in two CESs with community stakeholders representing study target populations. Our goals were to learn specific concerns about pharmacogenetic testing and preferred recruitment strategies for these communities. Concerns were expressed about how genetic information would be used beyond the immediate study. Participants emphasized the importance of clarity and transparency in communication to overcome participation hesitancy and mistrust of the study team. Recruitment strategy recommendations ranged from informal notices posted in healthcare settings to provider referrals. The CES enabled us to modify our recruitment methods and research materials to better communicate with populations currently under-represented in pharmacogenetics research.
大多数药物遗传学研究都是在欧洲血统的成年、非孕妇人群中进行的。为了验证研究结果和提高健康公平性,有必要对更多样化和特殊的人群进行研究。然而,招募多样化人群进行遗传研究存在重大障碍,例如由于历史上不道德的研究和持续存在的社会不平等,研究人员受到不信任。让社区参与并了解社区成员的观点可能有助于克服这些障碍并提高研究质量。在这里,我们强调了一种让社区参与的方法,即社区参与工作室(CES),这是一种咨询会议,允许研究人员根据社区成员的生活经验获得指导和反馈。我们还提供了一个在药物遗传学研究中使用该方法的例子。在设计一项针对患有慢性疾病的儿童和孕妇对药物遗传学检测的知识和态度的调查研究时,我们通过范德比尔特大学医学中心的 CES 从不同的社区利益相关者那里寻求意见。我们与代表研究目标人群的社区利益相关者一起参加了两个 CES。我们的目标是了解关于药物遗传学检测的具体问题,以及这些社区首选的招募策略。与会者对遗传信息将如何在研究之外使用表示担忧。参与者强调了在沟通中保持清晰和透明的重要性,以克服参与犹豫和对研究团队的不信任。招募策略建议从在医疗保健场所张贴非正式通知到提供者推荐不等。CES 使我们能够修改我们的招募方法和研究材料,以便更好地与当前在药物遗传学研究中代表性不足的人群进行沟通。
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