Explore
Pioneering ethics in a longitudinal study
Karen Birmingham
2018
0 Ungluers have
Faved this Work
Login to Fave
"Available Open Access under CC-BY-NC licenceThe 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."
This book is included in DOAB.
Why read this book? Have your say.
You must be logged in to comment.
Rights Information
Are you the author or publisher of this work? If so, you can claim it as yours by registering as an Unglue.it rights holder.Downloads
This work has been downloaded 79 times via unglue.it ebook links.
- 45 - pdf (CC BY-NC) at OAPEN Library.
Keywords
- age groups
- Age groups: children
- Avon Longitudinal Study of Parents and Children
- Children of the 90s
- Genetic Epidemiology
- Institutional review board
- Jean Golding
- Longitudinal Birth Cohorts
- National Health Service
- Research Ethics Committees
- Social groups
- Society & culture: general
- Society & Social Sciences
- thema EDItEUR::J Society and Social Sciences::JB Society and culture: general::JBS Social groups, communities and identities::JBSP Age groups and generations::JBSP1 Age groups: children
Links
DOI: 10.1332/9781447340423Editions