Department of Gerontology, Virginia Center on Aging, Virginia Commonwealth University, Richmond, VA.
Virginia Commonwealth University iCubed Commonwealth Scholars Program, Virginia Commonwealth University, Richmond, VA.
Ethn Dis. 2024 Oct 22;34(4):185-191. doi: 10.18865/EthnDis-2023-75. eCollection 2024 Oct.
The lack of diversity in genomic studies is a disparity that influences our understanding of human genomic variation and threatens equity in the benefits of precision medicine. Given our current genomic research with Black older adults, we conducted a qualitative study to elucidate participants' knowledge, attitudes, and beliefs about genomic research and research participation and what factors contribute to their willingness to participate and to gain insights into barriers that researchers may have in recruiting Black Americans. We conducted semistructured interviews (N=16) with previous genomic research participants, and an inductive thematic approach was used to code and interpret the data. The mean age was 70, 82% reported <$15,000 annual income, and 100% participated in genomic research. The results note that genomic research is poorly understood despite participation in prior genomic studies, and cultural beliefs about health and managing health impact an individual's research participation. Although not all participants identified with historical distrust, those who did report health system distrust also contributed distrust in research. Relationship building facilitates research participation, especially when perceived as personally relevant and meaningful. Participant incentives and convenience to engage in the study are less important if the personal benefits or relevance of the research are clear. Our results provide new context into the importance of relationship building and research literacy and highlight new considerations for engaging racially diverse populations in research.
基因组研究中的多样性缺失是一种差异,它影响我们对人类基因组变异的理解,并威胁精准医学的利益公平性。鉴于我们目前对老年黑人进行的基因组研究,我们进行了一项定性研究,以阐明参与者对基因组研究和研究参与的知识、态度和信念,以及哪些因素促使他们愿意参与,并深入了解研究人员在招募非裔美国人时可能遇到的障碍。我们对以前参与过基因组研究的参与者进行了半结构化访谈(N=16),并采用归纳主题方法对数据进行编码和解释。平均年龄为 70 岁,82%的人报告年收入<15000 美元,100%的人参与了基因组研究。结果表明,尽管参与者之前参加过基因组研究,但对基因组研究的理解仍然很差,对健康和管理健康的文化信仰会影响个人的研究参与。尽管并非所有参与者都认同历史上的不信任,但那些确实报告对医疗体系不信任的人也对研究不信任。建立关系有助于研究参与,尤其是当研究被认为与个人相关且有意义时。如果研究的个人利益或相关性很明确,那么参与者的激励措施和参与研究的便利性就不那么重要了。我们的研究结果提供了关于建立关系和研究素养的重要性的新背景,并强调了在研究中吸引不同种族人群的新考虑因素。