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★ Editorial ★

Biomedical data privacy: problems, perspectives, and recent advances

Bradley A Malin, Khaled El Emam, Christine M O'Keefe
DOI: http://dx.doi.org/10.1136/amiajnl-2012-001509 2-6 First published online: 1 January 2013
Keywords
  • Privacy
  • Biomedical Data
  • Review

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.35 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 networks810). 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 …