Pioneering Ethics in a Longitudinal Study

The Early Development of the ALSPAC Ethics and Law Committee

Karen Birmingham

Pioneering Ethics in a Longitudinal Study

Karen Birmingham

Distributed for Bristol University Press

136 pages | 5 x 7 3/4 | © 2017
Cloth $60.00 ISBN: 9781447340386 Published February 2018 For sale in North and South America only
The Avon Longitudinal Study of Parents and Children (ALSPAC), also known as “Children of the 90s,” is an unprecedented birth cohort study that, uniquely, enrolled participants in utero and obtained genetic material from a geographic population. This book describes the early work of the committee, from establishing the core ethical principles necessary to protect participants to the evolution of policies concerning confidentiality and anonymity, consent, non-intervention, disclosure of individual results, data access, and security. The book will be of interest to those involved in other cohort studies who want to understand the evolution of ethical policies as ALSPAC developed.
 
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