在面研究中共享临床数据的伦理考虑:多学科工作组的建议
Stephanie A Kraft1, Laura Stueckle2, Kathleen R Bogart3
1Department of Bioethics and Decision Sciences, Geisinger College of Health Sciences, Danville, PA, USA.
概括
这项研究提出了16条建议,建议在面研究中以参与者为中心的伦理和临床数据共享. 这些指南优先考虑患者体验,旨在改善数据治理和研究成果.
科学领域:
- 医学伦理 医学伦理
- 生物信息学是一种生物信息学.
- 面研究研究 面研究
背景情况:
- 临床数据共享对于推进面研究至关重要.
- 在数据共享中,道德考虑和以参与者为中心的方法至关重要.
- 之前的研究表明,参与者对数据共享的态度各不相同.
研究的目的:
- 制定关于在面研究中以参与者为中心的伦理,临床数据共享的建议.
- 为研究人员,数据库和面研究社区提供指导.
- 加强对数据共享实践的信任和透明度.
主要方法:
- 审议性多学科专家工作组会议.
- 对参与者对数据共享态度的经验数据的审查.
- 基于集体专业知识和数据的建议的反复改进.
主要成果:
- 在5个领域制定了16项建议:沟通,数据收集/保护,治理,研究人员教育和研究差距.
- 强调优先考虑患有面状况的个人的生活经历.
- 解决了面部图像隐私方面的挑战,并促进了可靠的数据共享实践.
结论:
- 这些建议为推进在面研究中以参与者为中心的临床数据共享提供了指导.
- 尊重参与者的价值观的道德数据共享可以加速科学发现.
- 改进的数据共享实践有可能改善面状况患者的治疗结果.
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