Pioneering ethics in a longitudinal study
"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 instig...
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| Format: | Book Chapter |
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Bristol
Policy Press
2018
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| Online Access: | Get Fullteks DOAB: description of the publication |
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| LEADER | 03255naaaa2200325uu 4500 | ||
|---|---|---|---|
| 001 | doab_20_500_12854_37183 | ||
| 020 | |a 9781447340423 | ||
| 024 | 7 | |a 10.1332/9781447340423 |c doi | |
| 041 | 0 | |a English | |
| 042 | |a dc | ||
| 072 | 7 | |a JFSP1 |2 bicssc | |
| 100 | 1 | |a Birmingham, Karen |4 auth | |
| 245 | 1 | 0 | |a Pioneering ethics in a longitudinal study |
| 260 | |a Bristol |b Policy Press |c 2018 | ||
| 300 | |a 1 electronic resource (136 p.) | ||
| 506 | 0 | |a Open Access |2 star |f Unrestricted online access | |
| 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." | ||
| 540 | |a Creative Commons |f https://creativecommons.org/licenses/by-nc/4.0/ |2 cc |4 https://creativecommons.org/licenses/by-nc/4.0/ | ||
| 546 | |a English | ||
| 650 | 7 | |a Age groups: children |2 bicssc | |
| 653 | |a avon longitudinal study of parents and children | ||
| 653 | |a children of the 90s | ||
| 653 | |a longitudinal birth cohorts | ||
| 653 | |a research ethics committees | ||
| 653 | |a genetic epidemiology | ||
| 653 | |a Institutional review board | ||
| 653 | |a Jean Golding | ||
| 653 | |a National Health Service | ||
| 856 | 4 | 0 | |a www.oapen.org |u https://library.oapen.org/bitstream/20.500.12657/30704/1/643791.pdf |7 0 |z Get Fullteks |
| 856 | 4 | 0 | |a www.oapen.org |u https://directory.doabooks.org/handle/20.500.12854/37183 |7 0 |z DOAB: description of the publication |