Privacy, Confidentiality, and Health Research

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.

• 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.

"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