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  1. Home
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  3. Sharing Linked Data for Health Research
  • Cited by 3
Publisher:
Cambridge University Press
Online publication date:
June 2022
Print publication year:
2022
Online ISBN:
9781108675789
DOI:
https://doi.org/10.1017/9781108675789
Subjects:
Law: General Interest, Medicine: General Interest, Medico-Legal, Bioethics and Health Law, Law, Medicine, Medical Law, Ethics and forensic Medicine
Series:
Cambridge Bioethics and Law
Information

Book description

Health research around the world relies on access to data, and much of the most valuable, reliable, and comprehensive data collections are held by governments. These collections, which contain data on whole populations, are a powerful tool in the hands of researchers, especially when they are linked and analyzed, and can help to address “wicked problems” in health and emerging global threats such as COVID-19. At the same time, these data collections contain sensitive information that must only be used in ways that respect the values, interests, and rights of individuals and their communities. Sharing Linked Data for Health Research provides a template for allowing research access to government data collections in a regulatory environment designed to build social license while supporting the research enterprise.

Reviews

‘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

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