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Privacy, Confidentiality, and Health Research

$22.00 USD

Part of Cambridge Bioethics and Law

  • Date Published: June 2012
  • availability: This ISBN is for an eBook version which is distributed on our behalf by a third party.
  • format: Adobe eBook Reader
  • isbn: 9781139512503

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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.

    • Analyzes current problems, reviews practical solutions and proposes new approaches
    • Reviews and comments in a concise manner
    • Discusses the intersections between privacy and research
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    Product details

    • Date Published: June 2012
    • format: Adobe eBook Reader
    • isbn: 9781139512503
    • contains: 1 b/w illus.
    • availability: This ISBN is for an eBook version which is distributed on our behalf by a third party.
  • 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.

  • Author

    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.

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