LEADER 02012nam a2200349 a 4500 001 991003555329707536 008 060404s20052005it abd r 101|0 fre d 020 $a2903189846 035 $ab13714740-39ule_inst 040 $aDip.to Beni Culturali$bita 245 02$aL'alun de Méditerranée :$bColloque International organisé par le Centre Camille Jullian (UMR 6573 du CNRS, Maison Méditerranéenne des Sciences de l'Homme), le Centre Jean Bérard de Naples (UMS 1797 du CNRS/EFR), l'unité de recherche "Histoire et archéologie des mondes chrétiens et musulmans médiévaux" (UMR 5648 du CNRS), la Maison de l'Orient et de la Méditerranée (UMR 5138 du CNRS) [...], Naples, 4-5-6 juin 2003, Lipari, 7-8 juin 2003 /$cédité par Philippe Borgard, Jean-Pierre Brun et Maurice Picon 260 $aNaples :$bCentre Jean Bérard ;$aAix-en-Provence,$bCentre Camille Jullian,$cc2005 300 $a352 p. :$bill. ;$c28 cm. 440 0$aCollection du Centre Jean Bérard,$x1590-3869 ;$v23 546 $aTesto in francese, italiano e inglese 650 4$aAlluminio$xIndustria$zRegione mediterranea$vCongresso 650 4$aAlluminio$zRegione mediterranea$yFino a 1550$vCongresso 651 4$aRegione mediterranea$xCondizioni economiche$vCongresso 700 1 $aBorgard, Philippe 700 1 $aBrun, Jean-Pierre 700 1 $aPicon, Maurice 710 2 $aCentre Camille Jullian 710 2 $aCNRS.$bUMR 5648 "Histoire et archéologie des mondes chrétiens et musulmans médiévaux" 710 2 $aCentre Jean Bérard 710 2 $aMaison de l'Orient méditerranéen, Lione 856 41$3Table of contents$uhttp://catdir.loc.gov/catdir/toc/casalini04/06923400.pdf$zTable of contents 907 $a.b13714740$b02-04-14$c15-04-08 912 $a991003555329707536 945 $aLE001 AN IV 44$g1$i2001000166497$lle001$nCambio$oe$pE40.00$q-$rl$s- $t0$u0$v0$w0$x0$y.i14724479$z15-04-08 996 $aAlun de Mediterranee$9108566 997 $aUNISALENTO 998 $ale001$b15-04-08$cm$da $e-$ffre$git $h2$i0 LEADER 05440nam 22006373 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(oapen)doab37183 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 $aBristol$cPolicy Press$d2018 210 1$aBristol :$cPolicy Press,$d2018. 210 4$d©2018. 215 $a1 online resource (136) 311 08$a1-4473-4038-8 311 08$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