Overview

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.

Full Product Details

Author:   Karen Birmingham (University of Bristol)
Publisher:   Bristol University Press
Imprint:   Policy Press
ISBN:  

9781447340386

ISBN 10:   1447340388
Pages:   136
Publication Date:   17 January 2018
Audience:   Professional and scholarly ,  General/trade ,  Professional & Vocational ,  General
Format:   Hardback
Publisher's Status:   Active
Availability:   Out of stock  
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Table of Contents

Introduction Part One: ALSPAC Ethics and Law Committee: a new concept one Preliminaries and pioneers: framing the questions two Informal or casual: an unusual style three Advisory to independent: a missed opportunity four Bureaucratic battles: liaison with the Local Research Ethics Committees Part Two: Policy development: a case of case law five Confidentiality and anonymity: a rod for their own backs six Informed consent: too much information seven Child protection: an observational study? eight Disclosure of individual results: foreseen feedback and incidental findings nine Disclosure of individual results: participants’ requests ten Participants’ problems: people not policies eleven External databases: anonymous linkage Part Three: Beyond policy: a broad remit twelve Retention of the Cohort: incentives or inducements thirteen Commercial collaborations: selling our souls fourteen Comprehensive oversight: undocumented and unacknowledged fifteen Influence beyond ALSPAC: extension of expertise Conclusions

Reviews

""A fascinating account of a pioneering study, which developed ethical procedures in an evolving context with no existing coherent framework."" Anna Tarrant, University of Lincoln

A fascinating account of a pioneering study, which developed ethical procedures in an evolving context with no existing coherent framework. Anna Tarrant, University of Lincoln

Author Information

Karen Birmingham is a Research Fellow at the Centre for Child and Adolescent Health, School of Social and Community Medicine, University of Bristol. Having been Secretary of the ALSPAC Ethics and Law Committee for 15 years, she has a particular interest in the development of the ethical policies that were necessary for the new methodologies used in ALSPAC.

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