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Sharing linked data for health research : toward better decision making / edited by Carolyn Adams, Macquarie University Law School, Judy Allen, University of Western Australia, Felicity Flack, University of Western Australia.
- Format:
- Book
- Series:
- Cambridge bioethics and law.
- Cambridge bioethics and law
- Language:
- English
- Subjects (All):
- Medical records--Access control--English-speaking countries.
- Medical records.
- Data protection--Law and legislation--English-speaking countries.
- Data protection.
- Medicine--Research--Law and legislation--English-speaking countries.
- Medicine.
- Linked data--Government policy--English-speaking countries.
- Linked data.
- Physical Description:
- 1 online resource (xxi, 252 pages) : digital, PDF file(s).
- Edition:
- First edition.
- Place of Publication:
- Cambridge, United Kingdom ; New York, NY : Cambridge University Press, 2022.
- Summary:
- 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.
- 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.
- Notes:
- Title from publisher's bibliographic system (viewed on 10 Jun 2022).
- Includes bibliographical references and index.
- ISBN:
- 9781108619912
- 1108619916
- 9781108631921
- 1108631924
- 9781108675789
- 1108675786
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