Birmingham Pioneering Ethics in a Longitudinal Study

The Early Development of the ALSPAC Ethics and Law Committee
1. Auflage 2018
ISBN: 978-1-4473-4039-3
Verlag: Policy Press
Format: EPUB
Kopierschutz: Adobe DRM (»Systemvoraussetzungen)

E-Book, Englisch, 136 Seiten

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.

Autoren/Hrsg.

Birmingham, Karen

Fachgebiete

• Medizin | Veterinärmedizin Medizin | Public Health | Pharmazie | Zahnmedizin Medizin, Gesundheitswesen Epidemiologie, Medizinische Statistik
• Sozialwissenschaften Soziologie | Soziale Arbeit Altersgruppen Kinder- und Jugendsoziologie
• Medizin | Veterinärmedizin Medizin | Public Health | Pharmazie | Zahnmedizin Medizin, Gesundheitswesen Medizinische Mathematik & Informatik
• Medizin | Veterinärmedizin Medizin | Public Health | Pharmazie | Zahnmedizin Medizin, Gesundheitswesen Medizinische Ethik
• Interdisziplinäres Wissenschaften Wissenschaften: Forschung und Information Forschungsmethodik, Wissenschaftliche Ausstattung

Inhaltsverzeichnis

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

Über Autor(innen)

Birmingham, Karen
Karen Birmingham is a Research Fellow at the Centre for Child & Adolescent Health, School of Social & 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.

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.