Privacy, Confidentiality, and Health Research

Examines how privacy, confidentiality, consent, identifiability, safeguards and data sharing affect the pursuit of health research for the common good.

William W. Lowrance (Author)

9781107020870, Cambridge University Press

Hardback, published 21 June 2012

198 pages, 1 b/w illus.
23.4 x 15.6 x 1.6 cm, 0.46 kg

"Privacy, Confidentiality and Health Research by William W. Lowrance has appeared like ‘manna’ from heaven."- Bartha Maria Knoppers, International Journal of Epidemiology

The potential of the e-health revolution, increased data sharing, database linking, biobanks and new techniques such as geolocation and genomics to advance human health is immense. For the full potential to be realized, though, privacy and confidentiality will have to be dealt with carefully. Problematically, many conventional approaches to such pivotal matters as consent, identifiability, and safeguarding and security are inadequate. In many places, research is impeded by an overgrown thicket of laws, regulations, guidance and governance. The challenges are being heightened by the increasing use of biospecimens, and by the globalization of research in a world that has not globalized privacy protection. Drawing on examples from many developed countries and legal jurisdictions, the book critiques the issues, summarizes various ethics, policy, and legal positions (and revisions underway), describes innovative solutions, provides extensive references and suggests ways forward.

1. Introduction
2. Data, biospecimens, and research
3. Privacy, confidentiality, safeguards
4. Broad privacy and the data protection regimes
5. Health care, public health, and research regimes
6. Consent
7. Identifiability and person-specific data
8. Genetics and genomics
9. Safeguards and responsibilities
10. Data sharing, access, and transfer
11. Ways forward.

Subject Areas: Medical & healthcare law [LNTM], Law [L]