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Privacy and the secondary use of data for health research: experience in Canada and suggested directions forward

机译：隐私和健康研究数据的二次使用：加拿大的经验和前进的方向

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This paper has three parts. The . rst part describes developments in the use of personal information for healthnresearch in Canada, challenges in responding to new data protection legislation and the work of the CanadiannInstitutes of Health Research in assisting the research community to adapt to these developments.nThe second part critiques two aspects of the stakeholder analysis posited in William Lowrance’s report: the lack ofnan analysis of researchers’ interests as distinct from those of society at large, and the framing of privacy as annindividual interest. I argue for recasting the privacy and research tension as a values con ict between two societalngoods and not an individual versus a societal interest, and for explicitly acknowledging researchers’ interests as datanusers. In so doing, there is no clear trump of privacy or research, and greater importance is placed upon thenweighing of bene. ts and risks of individual studies to determine whether the waiving of consent for a particularnstudy or programme of research is justi. ed.nThe third part makes speci. c suggestions as to future ways in which data use practices may evolve. I argue thenneed to engage the public in deliberating the broad parameters under which personal information will be used, asnthe public collectively has a major stake in this issue and their input provides legitimacy for these uses ofninformation. In addition, given the proliferation of prospectively-developed databases for research purposes, an‘systems’ approach for obtaining consent for participation to replace the current study-by-study recruitment ofnindividuals is appropriate.
机译：本文分为三个部分。的。第一部分描述了加拿大在个人健康研究中使用个人信息的发展，应对新数据保护法规的挑战以及加拿大健康研究所在协助研究界适应这些发展方面的工作。第二部分对以下两个方面进行了评论：威廉·罗兰斯（William Lowrance）的报告提出了利益相关者分析：缺乏对研究人员的利益进行不同于全体社会利益的南分析，并将隐私构筑为个人的利益。我主张将隐私和研究紧张性重塑为两个社会商品而非个人利益与社会利益之间的价值冲突，并明确承认研究人员作为数据用户的利益。这样做时，没有明显的隐私权或研究优势，因此，对称重的重要性给予了更大的重视。个别研究的风险和风险，以确定放弃特定研究或研究计划的同意是否合理。 ed.n第三部分进行具体说明。 c关于数据使用实践的未来发展方式的建议。因此，我认为需要使公众参与讨论将使用个人信息的广泛参数，因为公众集体在此问题上具有重大利益，他们的投入为信息的这些使用提供了合法性。此外，鉴于为研究目的而开发的前瞻性数据库的泛滥，一种“系统”的方法来征得参与的同意，以取代当前的按人学习的个人招募是合适的。

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