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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.Read more
- Analyzes current problems, reviews practical solutions and proposes new approaches
- Reviews and comments in a concise manner
- Discusses the intersections between privacy and research
Reviews & endorsements
"Privacy, Confidentiality and Health Research by William W. Lowrance has appeared like 'manna' from heaven... This book is a must not only for bioethics and legal scholars but for policymakers and politicians. It is accessible, reader-friendly and best of all a well-thought-out tool for much needed reform."
--Bartha Maria Knoppers, Director of the Centre of Genomics and Policy, McGill UniversitySee more reviews
"Privacy, Confidentiality and Health Research by William W. Lowrance has appeared like ‘manna’ from heaven."- Bartha Maria Knoppers, International Journal of Epidemiology
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- Date Published: July 2012
- format: Hardback
- isbn: 9781107020870
- length: 198 pages
- dimensions: 234 x 156 x 16 mm
- weight: 0.45kg
- contains: 1 b/w illus.
- availability: In stock
Table of Contents
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
7. Identifiability and person-specific data
8. Genetics and genomics
9. Safeguards and responsibilities
10. Data sharing, access, and transfer
11. Ways forward.
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