01730nam a2200325 i 4500991001592649707536120215s2012 it 001 0 ita 9788815234896b14038833-39ule_instDip.to SSCita945.0913092945.0843092 Lucarini, Federico 476532La carriera di un gentiluomo :Antonio Salandra e la ricerca di un liberalismo nazionale (1875-1922) /Federico LucariniBologna :Il mulino,2012378 p. ;22 cmPercorsiSalandra, Antonio<1853-1931>.b1403883317-05-2115-02-12991001592649707536LE021 SOC III 061c. 212021000167195le021-E29.00-l- 02120.i1538053115-02-12LE021 SOC III 060c. 312021000167188le021-E29.00-l- 0102100.i1538054315-02-12LE021 SOC26F13c. 412021000167102le021-E29.00-l- 01010.i1538055515-02-12LE021 SOC26F14c. 512021000167096le021-E29.00-l- 03030.i1538056715-02-12LE021 945.08 LUC01.0112020000039624le021pE29.00-n- 00000.i1542667121-06-12LE021 945.08 LUC01.0122020000039617le021pE29.00-n- 04040.i1542668321-06-12LE023 945.901 LUC 1 112023000283615le023LE021 SOC III 062 (vecchia collocazione) -E29.00-l- 03030.i1538052x15-02-12Carriera di un gentiluomo244539UNISALENTOle021le020le02315-02-12ma -itait 3005440nam 22006373 450 991025834950332120230513061101.010.1332/9781447340423(CKB)4100000002152761(OAPEN)643791(oapen)https://directory.doabooks.org/handle/20.500.12854/37183(DE-B1597)646829(DE-B1597)9781447340423(MiAaPQ)EBC6859148(Au-PeEL)EBL6859148(OCoLC)1030816779(OCoLC)1368055249(oapen)doab37183(EXLCZ)99410000000215276120230513d2018 uy 0enguuuuu---auuuutxtrdacontentcrdamediacrrdacarrierPioneering Ethics in a Longitudinal Study The early development of the ALSPAC Ethics and Law Committee1st ed.BristolPolicy Press2018Bristol :Policy Press,2018.©2018.1 online resource (136)1-4473-4038-8 1-4473-4042-6 Front Matter --Contents --List of figures and photographs --List of abbreviations --Authors and contributors, with current positions --Acknowledgements --Foreword --Preface --Introduction --ALSPAC Ethics and Law Committee: a new concept --Preliminaries and pioneers: framing the questions --Informal or casual: an unusual style --Advisory to independent: a missed opportunity --Bureaucratic battles: liaison with Local Research Ethics Committees --Policy development: a case of case law --Confidentiality and anonymity: a rod for their own backs --Informed consent: too much information --Child protection: an observational study? --Disclosure of individual results: foreseen feedback and incidental findings --Disclosure of individual results: participants' requests --Participants' problems: people not policies --External databases: anonymous linkage --Beyond policy: a broad remit --Retention of the Cohort: incentives or inducements --Commercial collaborations: selling our souls --Comprehensive oversight: undocumented and unacknowledged --Influence beyond ALSPAC: extension of expertise --Conclusions --Postscript --Notes --References --ALSPAC Steering Committee: founding members --ALSPAC Ethics and Law Committee members: appointed 1990-2005 --Letter to participants: further information concerning confidentiality --Young Mothers paper by Elizabeth Mumford --The Children of the Nineties study (ALSPAC) and collaboration with pharmaceutical companies --Index"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."Age groups: childrenbicsscavon longitudinal study of parents and childrenchildren of the 90slongitudinal birth cohortsresearch ethics committeesgenetic epidemiologyInstitutional review boardJean GoldingNational Health ServiceAge groups: children174Birmingham Karen902831Birmingham Karen, Golding Jean, MiAaPQMiAaPQMiAaPQBOOK9910258349503321Pioneering Ethics in a Longitudinal Study3242418UNINA