Children's Hospital of Eastern Ontario Research Institute, 401 Smyth Road, Ottawa, Ontario K1J 8L1, Canada.
Genome Med. 2011 Apr 27;3(4):25. doi: 10.1186/gm239.
Electronic health records are increasingly being linked to DNA repositories and used as a source of clinical information for genomic research. Privacy legislation in many jurisdictions, and most research ethics boards, require that either personal health information is de-identified or that patient consent or authorization is sought before the data are disclosed for secondary purposes. Here, I discuss how de-identification has been applied in current genomic research projects. Recent metrics and methods that can be used to ensure that the risk of re-identification is low and that disclosures are compliant with privacy legislation and regulations (such as the Health Insurance Portability and Accountability Act Privacy Rule) are reviewed. Although these methods can protect against the known approaches for re-identification, residual risks and specific challenges for genomic research are also discussed.
电子健康记录越来越多地与 DNA 存储库相关联，并被用作基因组研究的临床信息来源。许多司法管辖区的隐私立法和大多数研究伦理委员会都要求，在将数据用于二次目的之前，对个人健康信息进行去识别化，或者寻求患者同意或授权。在这里，我讨论了去识别化在当前基因组研究项目中的应用。最近的指标和方法可用于确保重新识别的风险较低，并且披露符合隐私立法和法规（如《健康保险流通与责任法案》隐私规则），这些方法也得到了审查。尽管这些方法可以防止已知的重新识别方法，但也讨论了基因组研究的剩余风险和特定挑战。
