Title Privacy, confidentiality, and health research / William W. Lowrance

Published Cambridge : Cambridge University Press, 2012

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Description 1 online resource Series Cambridge bioethics and law Cambridge bioethics and law. Contents Cover; Privacy, Confidentiality, and Health Research; Series; Title; Copyright; Dedication; Contents; Preface and acknowledgments; 1: Introduction; Health research as a public-interest cause; Privacy protection as a public-interest cause; Health data vulnerability; The challenges; 2: Data, biospecimens, and research; A few essential notions; The e-health revolution; Data and databases; Biospecimen collections; Public research resource platforms; Degrees of sensitivity; Data and biospecimen ownership; What is research, anyway?; 3: Privacy, confidentiality, safeguards; Privacy; Confidentiality Summary 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 Bibliography Includes bibliographical references and index Notes Print version record Subject Medical informatics. Information storage and retrieval systems -- Medical care Medical records -- Law and legislation. Health services accessibility -- Law and legislation. Medicine -- Data processing. Computer security. Health Services Research -- legislation & jurisprudence Privacy -- legislation & jurisprudence Computer Security Confidentiality -- ethics Confidentiality -- legislation & jurisprudence Databases, Factual -- legislation & jurisprudence Health Services Research -- ethics Medical Informatics Applications Medical Informatics LAW -- Medical Law & Legislation. Medicine -- Data processing Computer security Health services accessibility -- Law and legislation Information storage and retrieval systems -- Medical care Medical informatics Medical records -- Law and legislation Vertraulichkeit Forschung Medizin Gesetzgebung Genre/Form Electronic books Form Electronic book ISBN 9781139518819 113951881X 9781139107969 1139107968 9781139516952 1139516957 9781107696631 1107696631

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