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"Available Open Access under CC-BY-NC licence The Avon Longitudinal Study of Parents and Children (ALSPAC), also known as Children of the 90s, is a world-leading birth cohort study that uniquely enrolled participants in utero and obtained genetic material from a geographic population. It instigated the innovative but controversial ALSPAC Ethics and Law Committee.
This book describes in detail the early work of this Committee, from establishing the core ethical principles necessary to protect participants, to the evolution of policies concerning confidentiality and anonymity, consent, non-intervention and disclosure of individual results, data access and security. Quotes from interviews with early members of the Committee reflect not only on its pioneering work but also on the unusual style and inspirational leadership of the first Chair, Professor Michael Furmston.
This will be of interest to those involved in other cohort studies in understanding the evolution of ethical policies as ALSPAC developed."
The Avon Longitudinal Study of Parents and Children (ALSPAC), also known as Children of the 90s, is a world-leading birth cohort study that uniquely enrolled participants in utero and obtained genetic material from a geographic population. It instigated the innovative but controversial ALSPAC Ethics and Law Committee.
This book describes in detail the early work of this Committee, from establishing the core ethical principles necessary to protect participants, to the evolution of policies concerning confidentiality and anonymity, consent, non-intervention and disclosure of individual results, data access and security. Quotes from interviews with early members of the Committee reflect not only on its pioneering work but also on the unusual style and inspirational leadership of the first Chair, Professor Michael Furmston.
This will be of interest to those involved in other cohort studies in understanding the evolution of ethical policies as ALSPAC developed."
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Subjects
Age groups: children, Research, Family, Longitudinal method, EthicsShowing 4 featured editions. View all 4 editions?
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1
Pioneering Ethics in a Longitudinal Study: The Early Development of the ALSPAC Ethics and Law Committee
2018, Policy Press
in English
1447340388 9781447340386
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3
Pioneering Ethics in a Longitudinal Study: The Early Development of the ALSPAC Ethics and Law Committee
2018, Policy Press
in English
1447340396 9781447340393
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4
Pioneering ethics in a longitudinal study
Publish date unknown, Policy Press
in English
1447340426 9781447340423
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- Created July 21, 2020
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February 17, 2023 | Edited by ImportBot | import existing book |
November 16, 2020 | Edited by MARC Bot | import existing book |
July 21, 2020 | Created by MARC Bot | Imported from marc_oapen MARC record |