设计中的利益共享:人类基因组学研究的行动号召
Ann M Mc Cartney1, Amber Hartman Scholz2, Mathieu Groussin3
1Genomics Institute, University of California, Santa Cruz, California, USA;
Annual review of genomics and human genetics
|April 12, 2024
概括
在人类遗传学研究中确保公平的利益分享至关重要. 一个"设计中的利益共享"框架可以将公平融入研究过程中,解决基因组学中的伦理问题.
科学领域:
- 人类遗传学和基因组学
- 生物伦理学生物伦理学
- 研究伦理学研究伦理学
背景情况:
- 人类研究的伦理标准已经进步,但在人类遗传学和基因组学中,公平问题仍然存在.
- 从人类参与者研究中获得公平和公平的利益分享仍然是一个重大的伦理挑战.
- 诸如"名古屋议定书"之类的国际协议排除了人类基因组资源,这对利益共享原则构成了挑战.
研究的目的:
- 解决有关在使用人类基因组资源和样本时的公平性和公平性的担忧.
- 为人类基因组学研究中利益共享提出一个新的框架.
- 从落实人类基因组学利益共享的"名古屋议定书"中吸取教训.
主要方法:
- 概念框架的发展.
- 分析国际利益分担协议及其限制.
- 建议将利益共享纳入现有研究过程.
主要成果:
- 现有的国际法律不包括人类遗传资源,需要新的方法.
- 利益共享可以有效地在研究中作为自下而上的努力来实施.
- 提出了一个"设计中的利益分享"框架,以嵌入公平和公平.
结论:
- 对于道德的人类基因组学研究来说",设计中的利益共享"方法至关重要.
- 将利益共享纳入研究过程可以增强公平与公平.
- 从"名古屋议定书"的实施中吸取的经验可以为未来的利益分享模式提供信息.
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