Team Science in Precision Medicine Research:The Case for Inclusion of Adults With Intellectual Disability.

IF 1.9 4区 医学 Q1 EDUCATION, SPECIAL
Maya Sabatello, Katherine E McDonald
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引用次数: 0

Abstract

The inclusion of adults with intellectual disability (ID) in precision medicine research has scientific, public health, and social justice justifications. Yet there is an indication that this population is excluded from general (i.e., nondisability specific) health research, including precision medicine research. Adults with ID are thus unlikely to reap the benefits emerging from such scientific endeavors-today and in the future. In this commentary, we explore key issues in research ethics, including cohort diversity, the principle of justice, and consent, and discuss their ramifications for adults with ID and precision medicine researchers. We call for endorsing team science collaboration and community engagement to promote health equity for adults with ID and disability justice in precision medicine research.

精准医学研究中的团队科学:纳入智障成人的案例。
将智障成人纳入精准医学研究具有科学、公共卫生和社会正义的理由。然而,有迹象表明,这一人群被排除在一般(即非特定残疾)健康研究之外,包括精准医学研究。因此,无论是现在还是将来,患有本我症的成年人都不太可能从这种科学努力中获益。在这篇评论中,我们探讨了研究伦理中的关键问题,包括队列多样性、正义原则和同意,并讨论了它们对成年ID和精准医学研究人员的影响。我们呼吁支持团队科学合作和社区参与,以促进残疾成年人在精准医学研究中的健康公平和残疾公正。
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来源期刊
CiteScore
3.10
自引率
4.80%
发文量
47
期刊介绍: The American Journal on Intellectual and Developmental Disabilities (Print ISSN: 1944–7515; Online ISSN: 1944–7558) is published by the American Association on Intellectual and Developmental Disabilities. It is a scientifi c, scholarly, and archival multidisciplinary journal for reporting original contributions of the highest quality to knowledge of intellectual disabilities, its causes, treatment, and prevention.
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