MARC Record from marc_oapen

LEADER: 02953 am a22003013u 450
001 643791
005 20191126
007 cu#uuu---auuuu
008 191126s|||| xx o 0 u eng |
020 $a9781447340423
024 7 $a10.1332/9781447340423$2doi
041 0 $aeng
042 $adc
072 7 $aJFSP1$2bicssc
100 1 $aBirmingham, Karen$4aut
245 10 $aPioneering ethics in a longitudinal study
260 $aBristol$bPolicy Press$c2018
300 $a136
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."
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
856 40 $uhttp://www.oapen.org/download?type=document&docid=643791$zAccess full text online
856 40 $uhttps://creativecommons.org/licenses/by-nc/4.0/$zCreative Commons License