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E-grāmata: Sharing Linked Data for Health Research: Toward Better Decision Making

, (University of Western Australia, Perth), (University of Western Australia, Perth)
  • Formāts: EPUB+DRM
  • Sērija : Cambridge Bioethics and Law
  • Izdošanas datums: 09-Jun-2022
  • Izdevniecība: Cambridge University Press
  • Valoda: eng
  • ISBN-13: 9781108619912
  • Formāts - EPUB+DRM
  • Cena: 32,11 €*
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  • Formāts: EPUB+DRM
  • Sērija : Cambridge Bioethics and Law
  • Izdošanas datums: 09-Jun-2022
  • Izdevniecība: Cambridge University Press
  • Valoda: eng
  • ISBN-13: 9781108619912

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"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"--

Recenzijas

'This is a much-needed contribution to the international discussion of how to responsibly use linked data in health research. By covering theory and practice, ethics and law, Adams, Allen, and Flack offer more than just a well-researched academic volume: it is a playbook for researchers and regulators to optimize health data linkage to advance the public good.' Eric M. Meslin, Ph.D., FRSC, FCAHS President and CEO, Council of Canadian Academies 'I strongly recommend this excellent, comprehensive book. It's based on sound theoretical foundations and practical solutions with international relevance. It's a highly important, unique contribution to the literature and is relevant to professionals and students alike across the globe.' Kerina Jones, Professor of Population Data Science, Swansea University, Wales, UK 'This excellent monograph explains how linked personal data can be safely used to answer important health questions. Future decisions about data sharing, requiring legal authorisation as well as independent ethical review, should be timely, transparent and based on clear and consistent criteria.' John D. Mathews, Professorial Fellow, University of Melbourne 'Sharing Linked Data for Health Research is an outstanding academic achievement and worthy of purchase and study by all involved in data-intensive research.' Edward S. Dove, School of Law, University of Edinburgh, UK

Papildus informācija

A practical guide to reform of the regulatory environment for access to government held data for research.
List of Figures
ix
List of Tables
xi
Foreword xiii
Acknowledgements xvii
List of Abbreviations
xix
Introduction 1(8)
PART I CONTEXT FOR DECISION MAKING
9(74)
1 Research Using Linked Data
11(17)
2 Individual, Collective, and Public Interests
28(29)
3 Social Licence
57(26)
PART II FRAMEWORKS FOR DECISION MAKING
83(92)
4 Human Rights
85(21)
5 Research Ethics
106(25)
6 Law
131(44)
PART III PRACTICE AND PROCESS OF DECISION MAKING
175(66)
7 Existing Practice and Processes
179(27)
8 Better Practice and Processes
206(35)
Glossary 241(2)
Index 243
Carolyn Adams is a Senior Lecturer in the Law School at Macquarie University. She has three decades of experience working in the fields of administrative law, human rights and privacy in senior policy positions at federal, state and territory levels in Australia, at the Australian Law Reform Commission, and in academia. She has been a member of the Macquarie University Human Research Ethics Committee (Humanities and Social Sciences) since 2015. She was a member of the Population Health Research Network (PHRN) Ethics, Privacy and Consumer Engagement Advisory Group. Judy Allen is an Honorary Fellow of the Law School at the University of Western Australia with expertise in in torts, health law, and research ethics. She has provided policy advice to the Western Australian (WA) data linkage unit, government data custodians, and the Population Health Research Network on ethics, privacy, and data sharing processes. She has extensive experience in human research ethics and has chaired the WA Department of Health Human Research Ethics Committee, a specialist committee providing ethical review of data-based research projects, and the WA Country Health Service Human Research Ethics Committee. Felicity Flack is the Manager, Policy and Client Services for Australia's national data linkage infrastructure, the Population Health Research Network. She has extensive experience in the development, coordination and operation of national data linkage systems particularly the navigation of cross-jurisdictional legislative, policy and ethical issues. She also has many years of experience in research ethics including working as a research ethics manager as well as being a member and Chair of the Sir Charles Gairdner and Osborne Park Health Care Group Human Research Ethics Committee. Felicity is a Churchill Fellow.