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OverviewAn examination of the early work of the innovative Avon Longitudinal Study of Parents and Children Ethics and Law Committee. It will help anyone involved in other cohort studies to understand how ethical policies evolve. Full Product DetailsAuthor: Karen Birmingham (University of Bristol)Publisher: Bristol University Press Imprint: Policy Press ISBN: 9781447340386ISBN 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: Temporarily unavailable The supplier advises that this item is temporarily unavailable. It will be ordered for you and placed on backorder. Once it does come back in stock, we will ship it out to you. Table of ContentsIntroduction 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 ConclusionsReviews""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 InformationKaren 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. Tab Content 6Author Website:Countries AvailableAll regions |