Policy Press

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Pioneering ethics in a longitudinal study

The early development of the ALSPAC Ethics and Law Committee

Published

17 Jan 2018

Page count

136 pages

ISBN

978-1447340386

Dimensions

198 x 129 mm

Imprint

Policy Press
£45.00 £36.00You save £9.00 (20%) Add to basket

Published

17 Jan 2018

Page count

136 pages

ISBN

978-1447340409

Dimensions

198 x 129 mm

Imprint

Policy Press
£8.99 £7.19You save £1.80 (20%)Buy from Amazon.co.uk

Published

17 Jan 2018

Page count

136 pages

ISBN

978-1447340393

Dimensions

198 x 129 mm

Imprint

Policy Press
£8.99 £7.19You save £1.80 (20%) Add to basket

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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.

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.

Introduction

Part One: ALSPAC Ethics and Law Committee: a new concept

onePreliminaries and pioneers: framing the questions

twoInformal or casual: an unusual style

threeAdvisory to independent: a missed opportunity

fourBureaucratic battles: liaison with the Local Research Ethics Committees

Part Two: Policy development: a case of case law

fiveConfidentiality and anonymity: a rod for their own backs

sixInformed consent: too much information

sevenChild protection: an observational study?

eightDisclosure of individual results: foreseen feedback and incidental findings

nineDisclosure of individual results: participants’ requests

tenParticipants’ problems: people not policies

elevenExternal databases: anonymous linkage

Part Three: Beyond policy: a broad remit

twelveRetention of the Cohort: incentives or inducements

thirteenCommercial collaborations: selling our souls

fourteenComprehensive oversight: undocumented and unacknowledged

fifteenInfluence beyond ALSPAC: extension of expertise

Conclusions

"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