Pioneering Ethics in a Longitudinal Study : The early development of the ALSPAC Ethics and Law Committee

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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 instig...

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Détails bibliographiques
Auteur principal: Birmingham, Karen (Auteur)
Format: Électronique eBook
Langue:Inglés
Publié: Bristol : Policy Press, 2018.
Collection:Book collections on Project MUSE.
Sujets:
Research > Moral and ethical aspects.
Society and social sciences Society and social sciences.
Society and culture: general.
Social groups.
SOCIAL SCIENCE / Research.
Age groups: children.
Age groups.
Recherche > Aspect moral.
Longitudinal method > Moral and ethical aspects.
Families > Research > Moral and ethical aspects.
Electronic books.
Accès en ligne:Texto completo
Description
Résumé:"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 ALSPACdeveloped."
Description matérielle:1 online resource (136 pages).
ISBN:9781447340423
Accès:Open Access

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