Title Pioneering ethics in a longitudinal study : the early development of the ALSPAC Ethics and Law Committee / Karen Birmingham ; foreword by Jean Golding

Published Bristol : Policy Press, 2018

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Description 1 online resource (xxii, 204 pages) Summary "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." Analysis Avon Longitudinal Study of Parents and Children Children of the 90s Genetic Epidemiology Longitudinal Birth Cohorts Research Ethics Committees Notes English Subject Research -- Moral and ethical aspects. Families -- Research -- Moral and ethical aspects Longitudinal method -- Moral and ethical aspects Age groups. Age groups: children. Social groups. Society and culture: general. Society and social sciences Society and social sciences. SOCIAL SCIENCE -- Research. Research -- Moral and ethical aspects Genre/Form Electronic books Form Electronic book ISBN 9781447340423 1447340426

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