Pioneering Ethics in a Longitudinal Study: The Early Development of the Alspac Ethics and Law Committee

ISBN-13: 9781447340386 / Angielski / Twarda / 2018 / 136 str.

Karen Birmingham

Spis treści

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