Pioneering ethics in a longitudinal study : the early development of the ALSPAC Ethics and Law Committee /

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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...

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Detalles Bibliográficos
Autor principal: Birmingham, Karen (Autor, Contribuidor)
Otros Autores: Golding, Jean (Contribuidor)
Formato: Electrónico eBook
Idioma:Inglés
Publicado: Bristol : Policy Press, [2018]
Temas:
Social sciences (General).
Age groups: children.
SOCIAL SCIENCE / Research.
avon longitudinal study of parents and children
children of the 90s
longitudinal birth cohorts
research ethics committees
genetic epidemiology
Institutional review board
Jean Golding
National Health Service
Acceso en línea:Texto completo
Tabla de Contenidos:
  • 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

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