LEADER 05363nam 22006133 450 001 9910258349503321 005 20230513061101.0 024 7 $a10.1332/9781447340423 035 $a(CKB)4100000002152761 035 $a(OAPEN)643791 035 $a(oapen)https://directory.doabooks.org/handle/20.500.12854/37183 035 $a(DE-B1597)646829 035 $a(DE-B1597)9781447340423 035 $a(MiAaPQ)EBC6859148 035 $a(Au-PeEL)EBL6859148 035 $a(OCoLC)1030816779 035 $a(OCoLC)1368055249 035 $a(EXLCZ)994100000002152761 100 $a20230513d2018 uy 0 101 0 $aeng 135 $auuuuu---auuuu 181 $ctxt$2rdacontent 182 $cc$2rdamedia 183 $acr$2rdacarrier 200 10$aPioneering Ethics in a Longitudinal Study $eThe early development of the ALSPAC Ethics and Law Committee 205 $a1st ed. 210 1$aBristol :$cPolicy Press,$d2018. 210 4$dİ2018. 215 $a1 online resource (136) 311 $a1-4473-4038-8 311 $a1-4473-4042-6 327 $tFront Matter --$tContents --$tList of figures and photographs --$tList of abbreviations --$tAuthors and contributors, with current positions --$tAcknowledgements --$tForeword --$tPreface --$tIntroduction --$tALSPAC Ethics and Law Committee: a new concept --$tPreliminaries and pioneers: framing the questions --$tInformal or casual: an unusual style --$tAdvisory to independent: a missed opportunity --$tBureaucratic battles: liaison with Local Research Ethics Committees --$tPolicy development: a case of case law --$tConfidentiality and anonymity: a rod for their own backs --$tInformed consent: too much information --$tChild protection: an observational study? --$tDisclosure of individual results: foreseen feedback and incidental findings --$tDisclosure of individual results: participants' requests --$tParticipants' problems: people not policies --$tExternal databases: anonymous linkage --$tBeyond policy: a broad remit --$tRetention of the Cohort: incentives or inducements --$tCommercial collaborations: selling our souls --$tComprehensive oversight: undocumented and unacknowledged --$tInfluence beyond ALSPAC: extension of expertise --$tConclusions --$tPostscript --$tNotes --$tReferences --$tALSPAC Steering Committee: founding members --$tALSPAC Ethics and Law Committee members: appointed 1990-2005 --$tLetter to participants: further information concerning confidentiality --$tYoung Mothers paper by Elizabeth Mumford --$tThe Children of the Nineties study (ALSPAC) and collaboration with pharmaceutical companies --$tIndex 330 $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." 606 $aAge groups: children$2bicssc 610 $aavon longitudinal study of parents and children 610 $achildren of the 90s 610 $alongitudinal birth cohorts 610 $aresearch ethics committees 610 $agenetic epidemiology 610 $aInstitutional review board 610 $aJean Golding 610 $aNational Health Service 615 7$aAge groups: children 676 $a174 700 $aBirmingham$b Karen$0902831 702 $aBirmingham$b Karen, 702 $aGolding$b Jean, 801 0$bMiAaPQ 801 1$bMiAaPQ 801 2$bMiAaPQ 906 $aBOOK 912 $a9910258349503321 996 $aPioneering Ethics in a Longitudinal Study$93242418 997 $aUNINA