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J Am Med Inform Assoc 20:2-6 doi:10.1136/amiajnl-2012-001509
  • Focus on patient privacy

Biomedical data privacy: problems, perspectives, and recent advances

Editor's Choice
  1. Christine M O'Keefe5
  1. 1Department of Biomedical Informatics, Vanderbilt University, Nashville, Tennessee, USA
  2. 2Department of Electrical Engineering and Computer Science, Vanderbilt University, Nashville, Tennessee, USA
  3. 3Children's Hospital of Eastern Ontario, Ottawa, Ontario, Canada
  4. 4Department of Paediatrics, University of Ottawa, Ottawa, Ontario, Canada
  5. 5CSIRO Mathematics, Informatics and Statistics, Canberra, Australian Capital Territory, Australia
  1. Correspondence to Dr Bradley Malin, Department of Biomedical Informatics, Vanderbilt University, 2525 West End Avenue, Suite 600, Nashville, TN 37203, USA; b.malin{at}vanderbilt.edu
  • Received 19 November 2012
  • Revised 19 November 2012
  • Accepted 19 November 2012
  • Published Online First 6 December 2012

Introduction

The notion of privacy in the healthcare domain is at least as old as the ancient Greeks. Several decades ago, as electronic medical record (EMR) systems began to take hold, the necessity of patient privacy was recognized as a core principle, or even a right, that must be upheld.1 ,2 This belief was re-enforced as computers and EMRs became more common in clinical environments.3–5 However, the arrival of ultra-cheap data collection and processing technologies is fundamentally changing the face of healthcare. The traditional boundaries of primary and tertiary care environments are breaking down and health information is increasingly collected through mobile devices,6 in personal domains (eg, in one's home7), and from sensors attached on or in the human body (eg, body area networks8–10). At the same time, the detail and diversity of information collected in the context of healthcare and biomedical research is increasing at an unprecedented rate, with clinical and administrative health data being complemented with a range of *omics data, where genomics11 and proteomics12 are currently leading the charge, with other types of molecular data on the horizon.13 Healthcare organizations (HCOs) are adopting and adapting information technologies to support an expanding array of activities designed to derive value from these growing data archives, in terms of enhanced health outcomes.14

The ready availability of such large volumes of detailed data has also been accompanied by privacy invasions. Recent breach notification laws at the US federal and state levels have brought to the public's attention the scope and frequency of these invasions. For example, there are cases of healthcare provider snooping on the medical records of famous people, family, and friends, use of personal information for identity fraud, and millions of records disclosed through lost and stolen unencrypted mobile devices. …

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