让智障人士参与基因组研究的伦理问题:一个范围审查协议
Dorothy Chepkirui1, Patricia Kipkemoi1, Mary Bitta1
1Health Systems and Research Ethics, KEMRI Wellcome Trust Research Programme, Kilifi, Kenya.
Wellcome open research
|November 6, 2023
概括
本范围审查考察了涉及智障 (ID) 个体的基因组研究中的伦理和社会文化问题. 它强调需要额外的保护措施,同时确保它们的纳入,以获得有价值的见解.
科学领域:
- 基因组研究是基因组研究.
- 精神疾病 精神疾病
- 神经发育障碍 神经发育障碍
- 智力障碍 (ID) 是一种智力障碍.
背景情况:
- 精神病学基因组研究,专注于诸如智力障碍 (ID) 等疾病的表观遗传学,正在非洲扩大.
- 基因组研究,特别是关于ID个体的研究,带来了重大的社会,伦理,文化和法律挑战.
- 需要仔细考虑,如何平衡对ID患者额外保护的需求和错过有价值见解的机会.
研究的目的:
- 系统地审查和描述与智障人士参与基因组研究相关的伦理和社会文化问题.
- 识别文献中的空白,并为未来的研究方向提供信息.
- 为制定伦理准则和最佳实践提供基础.
主要方法:
- 根据乔安娜·布里格斯研究所的指导和PRISMA-ScR指导方针进行了范围审查.
- 在六个主要数据库 (Embase,Ovid Global Health,PubMed,Scopus,PsycInfo,Web of Science) 进行系统搜索.
- 独立选,数据图表,综合和引文选由三名审稿人进行,冲突解决涉及专家.
主要成果:
- 审查将综合来自同行评审的文章,指导文件和报告的发现.
- 将确定关键的伦理紧张局势和潜在的解决方案.
- 结果将在即将发布的范围审查出版物中详细说明.
结论:
- 本综述将阐明涉及智障人士的基因组研究中的关键伦理考虑.
- 它旨在提出解决这些复杂问题的解决方案.
- 结果将指导未来的实证伦理研究和政策制定.
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