Privacy, Confidentiality, and Health Research

Privacy, Confidentiality, and Health Research

  • Electronic book text
By (author) 

Currently unavailable

We can notify you when this item is back in stock

Add to wishlist

AbeBooks may have this title (opens in new window).

Try AbeBooks


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.
show more

Product details

  • Electronic book text
  • Cambridge University Press (Virtual Publishing)
  • Cambridge, United Kingdom
  • 1 b/w illus.
  • 1139512501
  • 9781139512503

Table of contents

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.
show more

Review quote

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

About William W. Lowrance

Dr William Lowrance is a consultant in health research policy and ethics, based in La Grande Motte, France. He has been a faculty member or fellow, teaching and conducting research on health policy, environmental policy and risk decision making, at Harvard, Stanford and Rockefeller Universities. He has served as the director of the Life Sciences and Public Policy Program of Rockefeller University and as the executive director of the International Medical Benefit/Risk Foundation, headquartered in Geneva. His books include Of Acceptable Risk: Science and the Determination of Safety and Modern Science and Human Values. In recent years he has focused on the issues of privacy and confidentiality in health research, and he chaired the advisory committee that drafted the Ethics and Governance Framework of UK Biobank.
show more