Pioneering Ethics in a Longitudinal Study

The Early Development of the ALSPAC Ethics and Law Committee

Pioneering Ethics in a Longitudinal Study
Karen Birmingham, Karen Birmin ...
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February 27, 2022 | History

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 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

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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


Classifications

Library of Congress
Q180.55.M67

The Physical Object

Pagination
136

ID Numbers

Open Library
OL37275008M
ISBN 13
9781447340386

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Better World Books record

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February 27, 2022 Created by ImportBot Imported from Better World Books record