Disability, diversity and trust in precision medicine research: stakeholdersengagement

精准医学研究中的残疾、多样性和信任：利益相关者参与

基本信息

批准号：
10653189
负责人：
Maya Sabatello
金额：
$ 79.57万
依托单位：
COLUMBIA UNIVERSITY HEALTH SCIENCES
依托单位国家：
美国
项目类别：
财政年份：
2021
资助国家：
美国
起止时间：
2021-03-12 至 2025-06-30
项目状态：
未结题

来源：
https://reporter.nih.gov/project-details/10653189
关键词：
Adult Affect African American African American population Alaska Native American Indians American Sign Language Asian Attention Black race Clinic Collaborations Communities Competence Data Data Collection Development Disabled Persons Educational workshop English Language Ensure Ethics Ethnic Origin Ethnic Population Focus Groups Genetic Genomics Goals Guidelines Health Individual Institution Interdisciplinary Study Journals Knowledge Latino Latino Population Measures Methods Minority Participation Modeling Not Hispanic or Latino Outcome Pacific Islander Participant Pathway interactions Peer Review Perception Persons Population Prevalence Procedures Process Professional Organizations Publications Race Recommendation Reporting Research Research Personnel Sampling Social Justice Societies Source Surveys Trust Vision Disorders Visual Work cohort community based participatory research comparative concept mapping design disability distrust ethnic diversity ethnic identity ethnic minority evidence base evidence based guidelines experience health disparity health disparity populations health equity hearing impairment individualized medicine insight interest marginalization marginalized population meetings member precision medicine racial minority racial population recruit symposium theories translational genomics trustworthiness webinar

项目摘要

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.

据估计，残疾人占总人口的 22%，是美国健康差距最大的群体。将他们纳入精准医学研究 (PMR) 对于获得量身定制的科学发现至关重要，确保健康公平，维护残疾人平等。对少数种族/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。人与与其他边缘化群体一样，残疾人可能也有类似和独特的 PMR（不）信任问题，尤其是来自少数种族/族裔的人。然而，迄今为止还没有研究探讨（不）信任的根源残疾人士中 PMR 的认知度，以及他们对 PMR 可信度的看法，而这是 PMR 的先决条件建立信任。残疾人和研究人员也可能会以信任和信任的方式看待关键问题。可信度有所不同，但没有研究探讨过这个问题。本研究的目的是 1) 确定领域行动能力、视力和听力 (MVH) 人群对 PMR 的不信任和可信度存在障碍跨种族/族裔群体的残疾（美国最常见的残疾）； 2）比较人们的观点患有 MVH 残疾、跨种族/族裔群体以及转化基因组 (TG) 研究人员、 PMR，关于对PMR的信任和可信赖； 3) 制定基于证据的建议残疾人对 PMR 的信任。为了实现这些目标，我们将采用概念图，这是一种多混合方法设计的步骤过程。我们将开展 1) 30 个焦点小组，按残疾类型和情况分层种族/民族（黑人/非裔美国人、拉丁裔、美洲印第安人/阿拉斯加原住民、亚洲/太平洋岛民、非西班牙裔白人）探索不信任的根源并确定影响对可信度的看法的因素 PMR； 2) 对 4,500 名 MVH 残疾人进行在线全国调查，对少数种族/族裔进行过采样，和 250 名 TG 研究人员系统地检查 PMR 的（不）信任领域并获得比较深入了解影响 PMR 可信度的因素。根据我们的发现，我们将进行迭代通过与两个利益相关者群体的接触来起草、修改和最终确定建议的过程。这些流程将允许开发对 PMR 的（不）信任的细致概念模型以及可行的解决方案。增强残疾人 PMR 可信度的路线图。该研究雇用了一名残疾人基于社区的参与性研究方法。它由跨学科研究团队领导，包括具有残疾生活经验并与国家组织合作的研究人员和专家残疾人士。研究材料、数据收集和结果将可供残疾人使用使用简单语言英语、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审期刊上的出版物，并通过发布简报与参与者分享结果，在残疾人会议上发表演讲，并与我们的社区合作伙伴举行网络研讨会。

项目成果

期刊论文数量（11）

专著数量（0）

科研奖励数量（0）

会议论文数量（0）

专利数量（0）

Project Inclusive Genetics: Protecting reproductive autonomy from bias via prenatal patient-centered counseling.

DOI：
10.1016/j.xhgg.2023.100228
发表时间：
2023-10-12
期刊：
HUMAN GENETICS AND GENOMICS ADVANCES
影响因子：
0
作者：
Jungels, Apolline;Demers, Lindsay;Ford, Eric;Stevens, Blair K.;Sabatello, Maya;Dasgupta, Shoumita
通讯作者：
Dasgupta, Shoumita

Wrongful Birth: AI-Tools for Moral Decisions in Clinical Care in the Absence of Disability Ethics.

DOI：
10.1080/15265161.2022.2075971
发表时间：
2022-07
期刊：
AMERICAN JOURNAL OF BIOETHICS
影响因子：
13.4
作者：
Sabatello, Maya
通讯作者：
Sabatello, Maya

The roots of (in)equity in precision medicine: gaps in the discourse.

精准医学公平（不公平）的根源：话语中的差距。

DOI：
10.2217/pme-2023-0097
发表时间：
2024
期刊：
Personalized medicine
影响因子：
2.3
作者：
Green,Sara;Prainsack,Barbara;Sabatello,Maya
通讯作者：
Sabatello,Maya

Increasing inclusivity in precision medicine research: Views of deaf and hard of hearing individuals.

DOI：
10.1016/j.gim.2021.11.015
发表时间：
2022-03
期刊：
GENETICS IN MEDICINE
影响因子：
8.8
作者：
Garofalo, Diana C.;Rosenblum, Howard A.;Zhang, Yuan;Chen, Ying;Appelbaum, Paul S.;Sabatello, Maya
通讯作者：
Sabatello, Maya

Structural Racism in the COVID-19 Pandemic: Moving Forward.

DOI：
10.1080/15265161.2020.1851808
发表时间：
2021-03
期刊：
AMERICAN JOURNAL OF BIOETHICS
影响因子：
13.4
作者：
Sabatello, Maya;Jackson Scroggins, Mary;Goto, Greta;Santiago, Alicia;McCormick, Alma;Morris, Kimberly Jacoby;Daulton, Christina R.;Easter, Carla L.;Darien, Gwen
通讯作者：
Darien, Gwen