Pioneering Ethics in a Longitudinal Study: The Early Development of the ALSPAC Ethics and Law Committee

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.