Description |
1 online resource (xxi, 252 pages) |
Series |
Cambridge bioethics and law |
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Cambridge bioethics and law.
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Contents |
Introduction -- Research using linked data -- Individual, collective, and public interests -- Social licence -- Human rights -- Research ethics -- Law -- Existing practice and processes -- Better practice and processes |
Summary |
"The genesis of this project was the experience of the authors working with researchers, data custodians, ethics committees, and linkage units over the past decade or more managing access to government administrative data for research. Our individual backgrounds, experience, and expertise meant that we brought a diverse, interdisciplinary approach to the table. We started to identify the problems: we heard from researchers that there were concerns with unjustified delay and lack of access to data for research that was in the public interest; we heard from data custodians that they found the decision-making process difficult because they did not have sufficient resources or guidance; we heard from ethics committees that they found data linkage projects complex and difficult to assess; and we heard from consumer representatives that there were concerns about privacy, transparency, community awareness, and consultation"-- Provided by publisher |
Bibliography |
Includes bibliographical references and index |
Notes |
Print version record |
Subject |
Medical records -- Access control -- English-speaking countries
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Data protection -- Law and legislation -- English-speaking countries
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Medicine -- Research -- Law and legislation -- English-speaking countries
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Linked data -- Government policy -- English-speaking countries
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Privacy, Right of -- English-speaking countries
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Data protection -- Law and legislation
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Medical records -- Access control
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Medicine -- Research -- Law and legislation
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Privacy, Right of
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English-speaking countries
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Form |
Electronic book
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Author |
Allen, Judy, 1953- author.
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Flack, Felicity, 1969- author.
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ISBN |
9781108675789 |
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1108675786 |
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