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 instigated...

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Autor principal: Karen Birmingham
Formato: Libro
Publicado: Policy Press 2018
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Acceso en línea:Ver este registro en EBSCOhost
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        au: Karen Birmingham
      su:
        Longitudinal method--Moral and ethical aspects
        Families--Research--Moral and ethical aspects
        Research--Moral and ethical aspects
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          SOCIAL SCIENCE / Research
          MEDICAL / Epidemiology
          MEDICAL / Ethics
          Longitudinal method--Moral and ethical aspects
          Families--Research--Moral and ethical aspects
          Research--Moral and ethical aspects
      ab: 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 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 and 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.
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