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.
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
"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