促进癌症基因组变异数据共享的政策选择:修改政策的结果 德尔菲
Jill O Robinson1, Amira Daoud1, Janis Geary2
1Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX, 77030, USA.
Journal of law and the biosciences
|July 17, 2023
概括
为可信实体提供稳定的资金对于共享癌症基因变异数据至关重要. 专家们优先考虑了为资助者提供政策选择,以改善基因组数据共享和癌症研究.
科学领域:
- 基因组学就是基因组学.
- 生物信息学是一种生物信息学.
- 卫生政策 卫生政策
背景情况:
- 分享癌症基因变异和临床数据对于推进癌症基因组学至关重要.
- 目前的数据共享面临重大障碍,包括金融可持续性,公平,激励,隐私,安全和数据质量.
研究的目的:
- 识别和排名基于证据的政策选择,以促进癌症基因变异数据的共享.
- 解决数据共享的障碍,以改善癌症相关基因组变异的解释.
主要方法:
- 与专家利益相关者一起进行了修改后的政策Delphi研究.
- 该研究涉及在美国背景下生成,评估和排名潜在的政策选择.
主要成果:
- 与金融可持续性相关的政策选择,特别是对可信实体的稳定融资,排名很高.
- 专家们更倾向于由资助者采取行动的政策选择,这些选择在有效性,可行性和优先级方面得分最高.
- 人们对涉及立法行为者和数据资源的政策选择表示怀疑.
结论:
- 稳定的资金机制对于实现强大的癌症基因变异数据共享至关重要.
- 针对资助者的政策干预措施对改善数据共享和推进癌症基因组学是最有希望的.
- 研究结果为决策者提供了必要的见解,旨在通过基因组数据共享来提高健康结果.
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