Heeney C, Hawkins N, de Vries J, Boddington P, Kaye J
The Ethox Centre, Department of Public Health and Primary Care, University of Oxford, Oxford, UK.
Public Health Genomics. 2011;14(1):17-25. doi: 10.1159/000294150. Epub 2010 Mar 29.
The protection of identity of participants in medical research has traditionally been guaranteed by the maintenance of the confidentiality of health information through mechanisms such as only releasing data in an aggregated form or after identifying variables have been removed. This protection of privacy is regarded as a fundamental principle of research ethics, through which the support of research participants and the public is maintained. Whilst this traditional model was adopted for genetics and genomics research, and was generally considered broadly fit for purpose, we argue that this approach is increasingly untenable in genomics. Privacy risk assessments need to have regard to the whole data environment, not merely the quality of the dataset to be released in isolation. As sources of data proliferate, issues of privacy protection are increasingly problematic in relation to the release of genomic data. However, we conclude that, by paying careful attention to potential pitfalls, scientific funders and researchers can take an important part in attempts to safeguard the public and ensure the continuation of potentially important scientific research.
传统上，医学研究参与者身份的保护是通过诸如仅以汇总形式发布数据或在识别变量被删除后发布数据等机制来维护健康信息的保密性来保证的。这种隐私保护被视为研究伦理的一项基本原则，通过它来维持研究参与者和公众的支持。虽然这种传统模式被用于遗传学和基因组学研究，并且通常被认为大体上适用于此目的，但我们认为这种方法在基因组学中越来越站不住脚。隐私风险评估需要考虑整个数据环境，而不仅仅是孤立发布的数据集的质量。随着数据来源的激增，与基因组数据发布相关的隐私保护问题日益突出。然而，我们得出的结论是，通过仔细关注潜在的陷阱，科学资助者和研究人员可以在保护公众和确保潜在重要科学研究的持续进行的努力中发挥重要作用。
