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Pioneering Ethics in a Longitudinal Study : The early development of the ALSPAC Ethics and Law Committee
| Pioneering Ethics in a Longitudinal Study : The early development of the ALSPAC Ethics and Law Committee |
| Autore | Birmingham Karen |
| Edizione | [1st ed.] |
| Pubbl/distr/stampa | Bristol : , : Policy Press, , 2018 |
| Descrizione fisica | 1 online resource (136) |
| Soggetto topico | Age groups: children |
| Soggetto non controllato |
avon longitudinal study of parents and children
children of the 90s longitudinal birth cohorts research ethics committees genetic epidemiology Institutional review board Jean Golding National Health Service |
| Formato | Materiale a stampa  |
| Livello bibliografico | Monografia |
| Lingua di pubblicazione | eng |
| Nota di contenuto | 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 |
| Record Nr. | UNINA-9910258349503321 |
Birmingham Karen
|
||
| Bristol : , : Policy Press, , 2018 | ||
| Materiale a stampa | ||
| Lo trovi qui: Univ. Federico II | ||
| ||
Pioneering Ethics in a Longitudinal Study : The early development of the ALSPAC Ethics and Law Committee
| Pioneering Ethics in a Longitudinal Study : The early development of the ALSPAC Ethics and Law Committee |
| Autore | Birmingham Karen |
| Edizione | [1st ed.] |
| Pubbl/distr/stampa | Bristol : , : Policy Press, , 2018 |
| Descrizione fisica | 1 online resource (136) |
| Soggetto topico | Age groups: children |
| Soggetto non controllato |
avon longitudinal study of parents and children
children of the 90s longitudinal birth cohorts research ethics committees genetic epidemiology Institutional review board Jean Golding National Health Service |
| Formato | Materiale a stampa |
| Livello bibliografico | Monografia |
| Lingua di pubblicazione | eng |
| Nota di contenuto | 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 |
| Record Nr. | UNISA-996509968103316 |
|
Birmingham Karen
|
||
| Bristol : , : Policy Press, , 2018 | ||
| Materiale a stampa | ||
| Lo trovi qui: Univ. di Salerno | ||
| ||