Description
Book SynopsisAn 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.
Trade Review"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
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 Conclusions
