Increasing inclusivity in precision medicine research: Views of deaf and hard of hearing individuals.
Increasing inclusivity in precision medicine research: Views of deaf and hard of hearing individuals.
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DOI：
10.1016/j.gim.2021.11.015
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发表时间：
2022-03
影响因子：
8.8
通讯作者：
Sabatello, Maya
中科院分区：
文献类型：
--
作者：
Garofalo, Diana C.;Rosenblum, Howard A.;Zhang, Yuan;Chen, Ying;Appelbaum, Paul S.;Sabatello, Maya
关键词：
聋人/听力障碍（HoH）个体可以从精准医学研究（PMR）中受益，但在主流健康研究中代表性不足，可能会遇到参与障碍。了解他们对PMR的看法和担忧可以为促进未来研究的包容性和减少健康差距提供信息。我们进行了一项在线的残疾人无障碍调查，以探讨阿利亚聋人/HoH个人对PMR的看法。问题包括参与意愿、对结果的兴趣以及参与的障碍和促进者。分析描述了自认为其主要条件为耳聋/HoH的参与者的结果，并比较了关键人口统计学特征的结果。267名聋人/HoH参与者完成了调查。对PMR的兴趣很高，尽管许多人报告说无法获得有关医学研究的设施和信息; 51%的人报告说与卫生专业人员的沟通是一个障碍。研究人员和医疗保健提供者对伤害、无法获得福利、错误的分配决定以及有限的残疾相关知识的担忧非常重要。不同种族，民族和性别群体的观察和讨论。提出了消除聋人/HoH个人参与PMR障碍的策略。不信任是群体多样性的主要挑战，需要研究来确定提高PMR工作可信度的措施。
Deaf/hard of hearing (HoH) individuals can benefit from precision medicine research (PMR) but are underrepresented in mainstream health research and may experience barriers to participation. Understanding their views and concerns about PMR can inform processes to foster inclusion in future studies and reduce health disparities. We administered an online, disability accessible survey to explore perceptions of PMR among inter alia deaf/HoH individuals. Questions included willingness to participate, interest in results, and barriers and facilitators to participation. Analyses describe results for participants who self-identified their primary condition as being deaf/HoH and compared results for key demographic characteristics. 267 deaf/HoH participants completed the survey. Interest in PMR was high, though many reported inaccessible facilities and information about medical research; 51% reported that communication with health professionals is a barrier. Concerns about harm, lack of access to benefits, misinformed allocation decisions and limited disability-relevant knowledge among researchers and healthcare providers were significant. Differences across racial, ethnic, and gender groups were observed and are discussed. Strategies to remove barriers to participation of deaf/HoH individuals in PMR are suggested. Distrust is a major challenge for cohort diversity and research is needed to identify measures to increase the trustworthiness of PMR endeavors.
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影响因子：
2.6
作者：
Boss, Emily F.;Niparko, John K.;Levinson, Kimberly L.
通讯作者：
Levinson, Kimberly L.
DOI：
10.1159/000442334
发表时间：
2016-01-01
期刊：
GENETICS OF DEAFNESS
影响因子：
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作者：
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通讯作者：
O'Day, B
影响因子：
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作者：
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通讯作者：
Correa-De-Araujo, Rosaly
影响因子：
2
作者：
Kuenburg, Alexa;Fellinger, Paul;Fellinger, Johannes
通讯作者：
Fellinger, Johannes