同意及其不满:英国生物银行的案例
1Department of Philosophy, University of Amsterdam, PO box 94201, 1090 GE, Amsterdam, The Netherlands. g.k.barn@uva.nl.
Medicine, health care, and philosophy
|July 17, 2025
概括
用于健康研究的英国生物库数据可能违反了参与者的同意. 一些应用,如商业用途的多基因分数,引发了伦理方面的担忧,缺乏监督.
科学领域:
- 生物医学研究伦理学
- 数据隐私和治理数据隐私和治理
背景情况:
- 英国生物银行是一个大型的生物医学数据库,包含来自50万名志愿者的遗传,健康和生活方式数据.
- 获准的研究人员可以获得数据访问权限,用于公共利益的与健康有关的研究.
研究的目的:
- 检查英国生物银行数据处理是否符合声明的目标和参与者的同意.
- 识别生物库数据的潜在滥用,包括"双重使用"问题和公共利益之外的应用.
主要方法:
- 分析英国生物银行的广泛同意模型和参与者信息材料.
- 审查已批准的研究项目及其下游应用,包括商业用途.
- 追踪研究成果,以确定可疑的进一步应用.
主要成果:
- 英国生物银行的广泛同意模式可能会掩盖数据使用的全部范围.
- 某些已批准的用途,如保险公司和基因测试公司,可能超过所述目标.
- 研究成果包括商业胚胎查中使用的"智能"的多基因评分,提出了"双重用途"和公共利益问题.
结论:
- 英国生物银行数据处理可能违反参与者的同意条款.
- 对"双重使用"和道德上有疑问的应用程序存在不充分的保障.
- 需要对生物库数据的使用进行更多的公众审议和监督.
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