Pioneering ethics in a longitudinal study

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Pioneering ethics in a longitudinal study
Karen Birmingham
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February 17, 2023 | History

Pioneering ethics in a longitudinal study

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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 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."

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."

Publish Date
Publisher
Policy Press
Language
English
Pages
136

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Edition Availability
Cover of: Pioneering Ethics in a Longitudinal Study
Cover of: Pioneering ethics in a longitudinal study
Pioneering ethics in a longitudinal study
2018, Policy Press
in English
Cover of: Pioneering Ethics in a Longitudinal Study
Cover of: Pioneering ethics in a longitudinal study
Pioneering ethics in a longitudinal study
Publish date unknown, Policy Press
in English

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Book Details


Edition Notes

English.

Published in
Bristol

The Physical Object

Pagination
136
Number of pages
136

ID Numbers

Open Library
OL28357764M
ISBN 13
9781447340423

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February 17, 2023 Edited by ImportBot import existing book
July 21, 2020 Created by MARC Bot import new book