Pioneering Ethics in a Longitudinal Study : : The early development of the ALSPAC Ethics and Law Committee.
"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 instig...
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| Place / Publishing House: | Bristol : : Policy Press,, 2018. ©2018. |
| Year of Publication: | 2018 |
| Edition: | 1st ed. |
| Language: | English |
| Physical Description: | 1 online resource (136) |
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Table of Contents:
- Front Matter
- Contents
- List of figures and photographs
- List of abbreviations
- Authors and contributors, with current positions
- Acknowledgements
- Foreword
- Preface
- Introduction
- ALSPAC Ethics and Law Committee: a new concept
- Preliminaries and pioneers: framing the questions
- Informal or casual: an unusual style
- Advisory to independent: a missed opportunity
- Bureaucratic battles: liaison with Local Research Ethics Committees
- Policy development: a case of case law
- Confidentiality and anonymity: a rod for their own backs
- Informed consent: too much information
- Child protection: an observational study?
- Disclosure of individual results: foreseen feedback and incidental findings
- Disclosure of individual results: participants' requests
- Participants' problems: people not policies
- External databases: anonymous linkage
- Beyond policy: a broad remit
- Retention of the Cohort: incentives or inducements
- Commercial collaborations: selling our souls
- Comprehensive oversight: undocumented and unacknowledged
- Influence beyond ALSPAC: extension of expertise
- Conclusions
- Postscript
- Notes
- References
- ALSPAC Steering Committee: founding members
- ALSPAC Ethics and Law Committee members: appointed 1990-2005
- Letter to participants: further information concerning confidentiality
- Young Mothers paper by Elizabeth Mumford
- The Children of the Nineties study (ALSPAC) and collaboration with pharmaceutical companies
- Index