在低收入和中等收入国家精准医学研究和基因测试的伦理考虑
Sondos Mubarak1, Mohamed Ashraf2
1Sherwin B Nuland Summer Institute in Bioethics Program Alumna, Yale Interdisciplinary Center for Bioethics, USA.
概括
在涉及低收入和中等收入国家的多中心试验中,道德数据共享至关重要. 加强伦理框架和促进合作,确保所有参与者均可获得精准医学的好处.
科学领域:
- 基因组学就是基因组学.
- 生物伦理学生物伦理学
- 全球健康 全球健康
背景情况:
- 在低收入和中等收入国家 (LMICs) 的多中心临床试验中,遗传数据传输是常见的.
- 向参与者传达这些转移是道德要求.
研究的目的:
- 在LMICs中分析精准医学研究的伦理实践.
- 为改善道德行为和公平的利益共享提供可行的建议.
主要方法:
- 进行了对已发表文献的叙事审查.
- 审查了与LMIC参与基因组研究相关的现有伦理框架.
主要成果:
- 确定的挑战包括在基因组数据库中的代表性不足,知情同意,数据安全,利用风险和有限的利益获取.
- 强调需要增加研究多样性,强大的伦理框架和知识共享.
- 加强国家道德委员会和促进合作是LMICs的关键.
结论:
- 参与者必须拥有关于样品所有权和对进行的遗传研究的知识的权利.
- 有约束力的协议是必要的,以确保试验参与者能够获得从他们的参与中开发的有效药物.
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