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oapen-20.500.12657-307042024-03-25T09:51:40Z Pioneering ethics in a longitudinal study Birmingham, Karen avon longitudinal study of parents and children children of the 90s longitudinal birth cohorts research ethics committees genetic epidemiology Institutional review board Jean Golding National Health Service thema EDItEUR::J Society and Social Sciences::JB Society and culture: general::JBS Social groups, communities and identities::JBSP Age groups and generations::JBSP1 Age groups: children "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." 2018-01-01 23:55:55 2019-11-26 14:59:56 2020-04-01T13:08:05Z 2020-04-01T13:08:05Z 2018 book 643791 OCN: 1030816779 1072042079 9781447340423 http://library.oapen.org/handle/20.500.12657/30704 eng application/pdf Attribution-NonCommercial 4.0 International 643791.pdf http://policypress.co.uk/pioneering-ethics-in-a-longitudinal-study Policy Press 10.1332/9781447340423 10.1332/9781447340423 f394f44e-e957-4b77-91b6-32fe9c22978a 9781447340423 136 Bristol open access
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English
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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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643791.pdf
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643791.pdf
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643791.pdf
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Policy Press
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2018
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http://policypress.co.uk/pioneering-ethics-in-a-longitudinal-study
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1799945290134847488
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