Review
Methods for the de-identification of electronic health records for genomic research
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Correspondence: Khaled El Emam kelemam@uottawa.ca
Children's Hospital of Eastern Ontario Research Institute, 401 Smyth Road, Ottawa, Ontario K1J 8L1, Canada
Pediatrics, Faculty of Medicine, University of Ottawa, Ottawa, Ontario, K1H 8L1, Canada
Genome Medicine 2011, 3:25 doi:10.1186/gm239
Published: 27 April 2011Abstract
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.