Pioneering ethics in a longitudinal study: The early development of the ALSPAC Ethics and Law Committee
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- Synopsis
- 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.
- Copyright:
- 2018
Book Details
- Book Quality:
- Publisher Quality
- Book Size:
- 136 Pages
- ISBN-13:
- 9781447340393
- Publisher:
- Policy Press
- Date of Addition:
- 10/21/21
- Copyrighted By:
- Bristol University Press
- Adult content:
- No
- Language:
- English
- Has Image Descriptions:
- No
- Categories:
- Nonfiction, Social Studies
- Submitted By:
- Bookshare Staff
- Usage Restrictions:
- This is a copyrighted book.