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 & 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 & 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.
Part I: ALSPAC Ethics and Law Committee: a new concept
Chapter 1. Preliminaries and pioneers: framing the questions
Chapter 2. Informal or casual: an unusual style
Chapter 3. Advisory to independent: a missed opportunity?
Chapter 4. Casual contact to bureaucratic battles: liaison with the LRECs
Part II: Policy development: a case of case law
Chapter 5. Confidentiality and anonymity: a rod for their own backs
Chapter 6. Informed consent: too much information?
Chapter 7. Child protection: an observational study?
Chapter 8. Disclosure of individual results: foreseen feedback and incidental findings
Chapter 9. Disclosure of individual results: participants’ requests
Chapter 10 . Participants’ problems: people not policies
Chapter 11. External databases: anonymous linkage?
Part III: Beyond policy: a broad remit
Chapter 12. Retention of Cohort: incentives or inducements?
Chapter 13. Overarching oversight: undocumented and unacknowledged?
Chapter 14. Commercial collaborations: selling our souls?
Chapter 15. Influence beyond ALSPAC: extension of expertise