Shim Janet K, McMahon Caitlin E, Saco Larissa, Bentz Michael, Foti Nicole, Lee Sandra Soo-Jin
Department of Social and Behavioral Sciences, University of California, San Francisco, CA, USA.
Division of Ethics, Department of Medical Humanities and Ethics, Columbia University, New York, NY, USA.
J Clin Transl Sci. 2025 Mar 18;9(1):e78. doi: 10.1017/cts.2025.45. eCollection 2025.
The diversity gap in precision medicine research (PMR) participation has led to efforts to boost the inclusion of underrepresented populations. Yet our prior research shows that study teams need greater support to identify key decision-making issues that influence diversity and equity, weigh competing interests and tradeoffs, and make informed research choices. We therefore developed a Diversity Decision Map (DDM) to support the identification of and dialogue about study practices that impact diversity, inclusion, and equity.
The DDM is empirically derived from a qualitative project that included a content analysis of documents, observations of research activities, and interviews with PMR stakeholders. We identified activities that influenced diversity goals and created a visual display of decision-making nodes, their upstream precedents, and downstream consequences. To assess the potential utility of the DDM, we conducted engagements with stakeholder groups (regulatory advisors, researchers, and community advisors).
These engagements indicated that the DDM helped diverse stakeholder groups trace tradeoffs of different study choices for diversity, inclusion, and equity, and suggest paths forward. Stakeholders agreed that the DDM could facilitate discussion of tradeoffs and decision-making about research resources and practices that impact diversity. Stakeholders felt that different groups could use the DDM to raise questions and dilemmas with each other, and shared suggestions to increase the utility of the DDM.
Based on a research life course perspective, and real-world research experiences, we developed a tool to make transparent the tradeoffs of research decisions for diversity, inclusion, and equity in PMR.
精准医学研究（PMR）参与中的多样性差距促使人们努力增加代表性不足人群的纳入。然而，我们之前的研究表明，研究团队需要更多支持，以识别影响多样性和公平性的关键决策问题，权衡相互竞争的利益和取舍，并做出明智的研究选择。因此，我们开发了一种多样性决策图（DDM），以支持识别和讨论影响多样性、包容性和公平性的研究实践。
DDM是从一个定性项目中实证得出的，该项目包括对文件的内容分析、对研究活动的观察以及对PMR利益相关者的访谈。我们确定了影响多样性目标的活动，并创建了一个决策节点、其上游先例和下游后果的可视化展示。为了评估DDM的潜在效用，我们与利益相关者群体（监管顾问、研究人员和社区顾问）进行了交流。
这些交流表明，DDM帮助不同的利益相关者群体追踪不同研究选择在多样性、包容性和公平性方面的权衡，并提出前进的方向。利益相关者一致认为，DDM可以促进对影响多样性的研究资源和实践的权衡和决策的讨论。利益相关者认为，不同群体可以使用DDM相互提出问题和困境，并分享提高DDM效用的建议。
基于研究生命历程的视角和现实世界的研究经验，我们开发了一种工具，以使PMR中关于多样性、包容性和公平性的研究决策的权衡透明化。
