在健康的早期谈论道德数据公私合作伙伴关系
Constantin Landers1, Kelly E Ormond1, Alessandro Blasimme1
1Health Ethics and Policy Lab, ETH Zurich, Hottingerstrasse 10, 8032 Zurich, Switzerland.
概括
制定公共私人健康数据共享伙伴关系的伦理准则至关重要. 这些指导方针有助于调整激励措施,并确保健康创新的社会利益.
科学领域:
- 医疗信息学 医疗信息学
- 生物伦理学生物伦理学
- 数据伦理数据伦理
背景情况:
- 公私合作伙伴关系 (PPP) 对于通过数据共享推动医学研究变得越来越重要.
- 在PPP中,公共和私人实体之间的优先事项冲突会造成挑战,并引发诸如信任,正义和隐私等道德问题.
- 解决这些不一致的激励措施对于成功,对社会有益的健康创新至关重要.
研究的目的:
- 在公私合作伙伴关系中制定卫生数据共享的伦理准则.
- 将实际的利益相关者现实纳入健康数据共享的伦理框架.
- 为了减轻错误的激励措施,并确保健康数据PPPs的伦理实践.
主要方法:
- 该研究涉及确定PPP的健康数据共享中的关键伦理问题.
- 核心利益相关者被要求纳入他们的实践经验和观点.
- 建立了一个制定正式道德原则和实践的过程.
主要成果:
- 制定了瑞士个性化健康网络关于在PPP中共享健康数据的伦理准则.
- 确定了核心的伦理问题,并概述了在瑞士背景下克服这些问题的策略.
- 在合作伙伴关系开始时正式制定伦理原则的框架.
结论:
- 在健康数据PPP中正式制定伦理原则和实践,促进相互承诺并使所有各方受益.
- 伦理准则对于应对复杂的数据共享环境和促进负责任的创新至关重要.
- 这项工作有助于在公私合作中就伦理健康数据共享的全球对话.
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