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dc.contributor.authorBirmingham, Karen
dc.date.accessioned2018-01-01 23:55:55
dc.date.accessioned2019-11-26 14:59:56
dc.date.accessioned2020-04-01T13:08:05Z
dc.date.available2020-04-01T13:08:05Z
dc.date.issued2018
dc.identifier643791
dc.identifierOCN: 1030816779en_US
dc.identifier1072042079en_US
dc.identifier.urihttp://library.oapen.org/handle/20.500.12657/30704
dc.description.abstract"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."
dc.languageEnglish
dc.subject.classificationbic Book Industry Communication::J Society & social sciences::JF Society & culture: general::JFS Social groups::JFSP Age groups::JFSP1 Age groups: children
dc.subject.otheravon longitudinal study of parents and children
dc.subject.otherchildren of the 90s
dc.subject.otherlongitudinal birth cohorts
dc.subject.otherresearch ethics committees
dc.subject.othergenetic epidemiology
dc.subject.otherInstitutional review board
dc.subject.otherJean Golding
dc.subject.otherNational Health Service
dc.titlePioneering ethics in a longitudinal study
dc.typebook
oapen.identifier.doi10.1332/9781447340423
oapen.relation.isPublishedByf394f44e-e957-4b77-91b6-32fe9c22978a
oapen.pages136
oapen.place.publicationBristol
oapen.remark.publicRelevant Wikipedia pages: Avon Longitudinal Study of Parents and Children - https://en.wikipedia.org/wiki/Avon_Longitudinal_Study_of_Parents_and_Children; Ethics - https://en.wikipedia.org/wiki/Ethics; Institutional review board - https://en.wikipedia.org/wiki/Institutional_review_board; Jean Golding - https://en.wikipedia.org/wiki/Jean_Golding; Longitudinal study - https://en.wikipedia.org/wiki/Longitudinal_study; National Health Service - https://en.wikipedia.org/wiki/National_Health_Service
oapen.identifier.ocn1030816779
oapen.identifier.ocn1072042079


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