Ethical issues of involving people with intellectual disabilities in genomic research: a scoping review protocol.
Ethical issues of involving people with intellectual disabilities in genomic research: a scoping review protocol.
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DOI：
10.12688/wellcomeopenres.19403.1
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发表时间：
2023
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背景资料：精神病基因组研究是非洲一个不断发展的研究领域，正在研究精神疾病的表观遗传学;其中一个具体的重点是神经发育障碍，包括智力残疾（ID）。进行这种类型的研究对于确定病因和可能的干预措施或进一步研究的领域非常重要。然而，基因组研究和精神病基因组研究面临着许多社会、伦理、文化和法律的问题;涉及ID患者的研究尤其具有挑战性。所有研究利益相关者-研究人员，研究审查机构，监管机构，患者团体-通常同意，涉及ID的人需要几个考虑因素，包括额外的保护。人们还认识到，不让智障人士参与与他们相关的研究意味着错过了学习包括生活经验在内的具体问题的机会。在这一范围审查，我们的目的是描述的范围内的伦理和社会文化问题，从现有的文献中的智力残疾的人参与基因组研究。 研究方法：本次范围界定审查将根据乔安娜·布里格斯研究所的范围界定审查指南进行，并使用PRISMA-ScR指南进行报告。迭代审查阶段将包括系统检索6个数据库（Embase、奥维德全球健康、PubMed、Scopus、PsycInfo和Web of Science核心数据集）、筛选、制图和数据综合。还将对纳入最终综述的文章进行正向和反向引文筛选。我们将包括同行评审的期刊文章，指导文件和报告。根据合格性标准筛选和选择研究将由三名审查员独立完成;冲突将通过与第三名审查员和其他专家讨论解决。 结果：结果将纳入范围界定审查出版物中。 结论：这一范围审查将确定道德紧张的关键领域和可能的解决方案，并为经验道德研究提供机会。
Background: Psychiatric genomic research is a growing field of research in Africa that is looking at epigenetics of psychiatric disorders; within which a specific focus is neurodevelopmental disorders including intellectual disability (ID). Conducting this type of research is important to identify etiologies and possible interventions or areas for further research. However, genomic research generally, and psychiatric genomic research, faces many social, ethical, cultural, and legal issues; research involving people with ID is particularly challenging. All research stakeholders - researchers, research review bodies, regulators, patient groups - generally agree that involving people with ID require several considerations, including extra protection. It is also recognized that not involving people with ID in research that is relevant to them means that opportunities to learn on specific issues including lived experiences are missed. In this scoping review, we aim to describe the range of ethical and social-cultural issues concerning involvement of people with intellectual disability in genomic research from existing literature. Methods: This scoping review will be conducted based on the Joanna Briggs Institute guidance for scoping review and reported using the PRISMA-ScR guidelines. Iterative review stages will include systematic search of six databases (Embase, Ovid Global Health, PubMed, Scopus, PsycInfo and Web of Science core collection), screening, charting and synthesis of the data. Forward and backward citation screening will also be done for the articles included in the final review. We will include peer reviewed journal articles, guidance documents and reports. Screening and selection of studies based on the eligibility criteria will be done independently by three reviewers; conflicts will be resolved through discussion with a third reviewer and other experts. Results: The results will be included in the scoping review publication. Conclusions: This scoping review will identify key areas of ethical tensions and possible solutions and inform opportunities for empirical ethics studies.