精准医学研究中的团队科学：纳入成年智障人士的理由
Team Science in Precision Medicine Research:The Case for Inclusion of Adults With Intellectual Disability.
作者信息
Sabatello Maya, McDonald Katherine E
机构信息
Maya Sabatello, Columbia University Irving Medical Center; and Katherine E. McDonald, Syracuse University.
出版信息
Am J Intellect Dev Disabil. 2025 May 1;130(3):171-177. doi: 10.1352/1944-7558-130.3.171.
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.
将成年智障人士纳入精准医学研究有科学、公共卫生和社会正义等方面的依据。然而，有迹象表明，这一人群被排除在一般（即非特定于残疾的）健康研究之外，包括精准医学研究。因此，成年智障人士不太可能从这些科学努力中——无论是现在还是未来——获得益处。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、正义原则和同意问题，并讨论了它们对成年智障人士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，以促进成年智障人士在精准医学研究中的健康公平和残疾正义。
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