Disability, diversity and trust in precision medicine research: stakeholdersengagement

据估计，残疾人占美国人口的22%，是美国健康差距最大的群体。 将它们纳入精密医学研究(PMR)对于获得量身定做的科学发现至关重要，确保 健康公平，维护残疾人平等。对少数族裔的研究表明 对PMR的不信任阻碍了这些目标的实现。研究还发现，社区成员之间的不和谐 研究人员对信任组成部分的看法可能会对研究合作产生负面影响。具有以下特征的人 残疾人很可能与其他边缘化群体一样存在(不信任)PMR的相似和独特的问题， 特别是那些来自种族/少数民族的人。然而，到目前为止，还没有研究探索(不信任)的来源 在残障人士的PMR中，也没有他们对PMR可信度的看法，这是 建立信任。残疾人和研究人员也可能会以信任和 可信度有所不同，但还没有研究对这个问题进行研究。这项研究的目的是1)确定 行动、视觉和听力(MVH)人群对PMR可信度的不信任和障碍 残疾(美国最常见的残疾)，跨种族/民族；2)比较人们的观点 有MVH残疾的人，跨种族/民族群体，翻译基因组(TG)研究人员， PMR，关于PMR的信任和可信度；以及3)为建立基于证据的建议 残障人士对PMR的信任。为了达到这些目标，我们将使用概念图，一种多层次的 采用混合方法设计的分步过程。我们将开展1)30个焦点小组，按残疾类型和 种族/民族(黑人/非裔美国人、拉丁裔、美国印第安人/阿拉斯加原住民、亚洲/太平洋岛民、非 西班牙裔白人)，以探索不信任的来源，并确定影响对 PMR；2)对4,500名MVH残疾人进行在线全国调查，过度抽样的种族/族裔少数群体， 和250名TG研究人员系统地检查PMR中(不信任)的域，并获得比较 洞察影响PMR可信度的因素。基于我们的发现，然后我们将进行迭代 通过与这两个利益攸关方小组的接触来起草、修订和最终确定建议的过程。 这些过程将允许在PMR中开发一个细微差别的(不信任)概念模型和一个可操作的 提高残疾人对PMR可信度的路线图。这项研究使用了一种残疾 以社区为基础的参与式研究方法。它由一个跨学科的研究团队领导，包括 有残疾生活经验并与国家残疾人组织合作的研究人员和专家 残疾人。研究材料、数据收集和研究结果将可供残疾人访问和使用 通俗易懂的英语、西班牙语和美国手语。我们将在专业会议上展示我们的发现。 会议和同行评议期刊上的出版物，并通过张贴简报与与会者分享成果， 在残疾人会议上发表演讲，并与我们的社区合作伙伴举办网络研讨会。

People with disabilities are estimate at 22% of the population and the largest health disparity group in the U.S. Including them in Precision Medicine Research (PMR) is vital to attaining tailored scientific findings, assuring health equity and upholding the equality of people with disabilities. Studies of racial/ethnic minorities suggest that distrust of PMR thwarts fulfillment of these goals. Studies also found that discord in community members' and researchers' views about components of trust may negatively impact research collaboration. People with disabilities are likely to have both similar and unique issues of (dis)trust of PMR as other marginalized groups, especially those from racial/ethnic minorities. Yet, no study to date has explored the sources of (dis)trust in PMR among people with disabilities, nor their views about trustworthiness of PMR, a prerequisite for building trust. It is also likely that people with disabilities and researchers will view key issues in trust and trustworthiness differently, but no study has examined this issue. This study aims to 1) identify domains of distrust in and barriers to trustworthiness of PMR among people with mobility, vision and hearing (MVH) disabilities (most common disabilities in the U.S.), across racial/ethnic groups; 2) compare the views of people with MVH disabilities, across racial/ethnic groups, and translational genomic (TG) researchers, the leaders of PMR, about trust in and trustworthiness of PMR; and 3) develop evidence-based recommendations for building trust in PMR among people with disabilities. To achieve these aims, we will employ Concept Mapping, a multi- step process with mixed-methods design. We will conduct 1) 30 focus groups, stratified by disability-type and race/ethnicity (Black/African Americans, Latinos, American Indian/Alaska Natives, Asian/Pacific Islanders, non- Hispanic Whites) to explore sources of distrust and to identify factors affecting views on trustworthiness of PMR; 2) online, national surveys with 4,500 people with MVH disabilities, oversampling racial/ethnic minorities, and 250 TG researchers to examine systematically domains of (dis)trust in PMR and to gain comparative insight about factors affecting trustworthiness of PMR. Based on our findings, we will then conduct an iterative process to draft, revise and finalize recommendations through engagement with both stakeholder groups. These processes will allow development of a nuanced conceptual model of (dis)trust in PMR and an actionable roadmap for enhancing PMR trustworthiness among people with disability. The study employs a disability community-based participatory research approach. It is led by an interdisciplinary research team, including researchers and experts with lived experiences of disabilities and collaboration with national organizations of people with disabilities. Study material, data collection, and findings will be disability-accessible and available in plain language English, Spanish and American Sign Language. We will present our findings at professional meetings and in publications in peer-reviewed journals, and share results with participants by posting briefs, presenting at disability conferences, and holding webinars with our community partners.