MARC Record from marc_oapen

LEADER: 03363namaa2200337uu 450
001 http://library.oapen.org/handle/20.500.12657/30704
005 20180101
020 $a9781447340423
024 7 $a10.1332/9781447340423$cdoi
041 0 $aEnglish
042 $adc
072 7 $aJFSP1$2bicssc
100 1 $aBirmingham, Karen$4auth
245 10 $aPioneering ethics in a longitudinal study
260 $aBristol$bPolicy Press$c2018
300 $a1 electronic resource (136 p.)
506 0 $aOpen Access$2star$fUnrestricted online access
520 $a"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."
540 $aCreative Commons$fhttps://creativecommons.org/licenses/by-nc/4.0/$2cc$4https://creativecommons.org/licenses/by-nc/4.0/
546 $aEnglish
650 7 $aAge groups: children$2bicssc
653 $aavon longitudinal study of parents and children
653 $achildren of the 90s
653 $alongitudinal birth cohorts
653 $aresearch ethics committees
653 $agenetic epidemiology
653 $aInstitutional review board
653 $aJean Golding
653 $aNational Health Service
856 40 $awww.oapen.org$uhttps://library.oapen.org/bitstream/id/96074c09-925d-42d9-b7a2-b60493fb7239/643791.pdf$70$zOAPEN Library: download the publication
856 40 $awww.oapen.org$uhttp://library.oapen.org/handle/20.500.12657/30704$70$zOAPEN Library: description of the publication