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The Case for De-Identifying Personal Health Information

Posted: 23 Jan 2011  

Khaled El Emam

University of Ottawa

Elizabeth Jonker

Children's Hospital of Eastern Ontario Research Institute

Anita Fineberg

affiliation not provided to SSRN

Date Written: January 18, 2011

Abstract

The demand on data custodians to disclose health information for secondary purposes is increasing dramatically. These demands come from researchers, public health professionals, commercial actors, and governments. In many jurisdictions, de-identification is one set of methods that can be used to allow the use and disclosure of health information without consent. This report describes the reasons why it is desirable or necessary to de-identify health data before disclosing or using it for secondary purposes. The scenarios we consider reflect the most common conditions under which a custodian would want to de-identify the data. These include an assessment of alternatives, such as consent, on-site access, and remote access to data, the impacts of data breaches and breach notification, unplanned and unexpected uses of data by the public and private sectors, and public perception and trust.

Keywords: de-identification, privacy, consent, re-identification, anonymization, data sharing

Suggested Citation

El Emam, Khaled and Jonker, Elizabeth and Fineberg, Anita, The Case for De-Identifying Personal Health Information (January 18, 2011). Available at SSRN: https://ssrn.com/abstract=1744038 or http://dx.doi.org/10.2139/ssrn.1744038

Khaled El Emam (Contact Author)

University of Ottawa ( email )

401 Smyth Road
Ottawa, Ontario K1H 8L1
Canada

Elizabeth Jonker

Children's Hospital of Eastern Ontario Research Institute ( email )

401 Smyth Road
Ottawa, Ontario
Canada

Anita Fineberg

affiliation not provided to SSRN ( email )

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