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 instigated...
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| Κύριος συγγραφέας: | |
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| Μορφή: | Online |
| Γλώσσα: | Αγγλικά |
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Policy Press
2021
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| Διαθέσιμο Online: | 643791 |
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| _version_ | 1869518336135528448 |
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| author | Birmingham, Karen |
| author_browse | Birmingham, Karen |
| author_facet | Birmingham, Karen |
| author_sort | Birmingham, Karen |
| collection | Directory of Open Access Books |
| description | "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." |
| format | Online |
| id | doab-20.500.12854ir-37183 |
| institution | Directory of Open Access Books |
| language | eng |
| publishDate | 2021 |
| publishDateRange | 2021 |
| publishDateSort | 2021 |
| publisher | Policy Press |
| publisherStr | Policy Press |
| record_format | ojs |
| spelling | doab-20.500.12854ir-371832025-07-29T20:30:50Z Pioneering ethics in a longitudinal study Birmingham, Karen 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 thema EDItEUR::J Society and Social Sciences::JB Society and culture: general::JBS Social groups, communities and identities::JBSP Age groups and generations::JBSP1 Age groups: children "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." 2021-02-10T12:58:18Z 2018-01-01 23:55:55 2019-11-26 14:59:56 2020-04-01T13:08:05Z 2018 book 643791 OCN: 1030816779 1072042079 http://library.oapen.org/handle/20.500.12657/30704 9781447340423 https://directory.doabooks.org/handle/20.500.12854/37183 eng open access image/jpeg image/jpeg image/jpeg image/jpeg image/jpeg image/jpeg Attribution-NonCommercial 4.0 International Attribution-NonCommercial 4.0 International Attribution-NonCommercial 4.0 International Attribution-NonCommercial 4.0 International Attribution-NonCommercial 4.0 International Attribution-NonCommercial 4.0 International https://library.oapen.org/bitstream/20.500.12657/30704/1/643791.pdf https://library.oapen.org/bitstream/20.500.12657/30704/1/643791.pdf https://library.oapen.org/bitstream/20.500.12657/30704/1/643791.pdf https://library.oapen.org/bitstream/20.500.12657/30704/1/643791.pdf https://library.oapen.org/bitstream/20.500.12657/30704/1/643791.pdf https://library.oapen.org/bitstream/20.500.12657/30704/1/643791.pdf Policy Press 10.1332/9781447340423 10.1332/9781447340423 f21943e0-ecd3-45d9-8059-9baf413aa6cf 9781447340423 136 Bristol open access |
| spellingShingle | 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 thema EDItEUR::J Society and Social Sciences::JB Society and culture: general::JBS Social groups, communities and identities::JBSP Age groups and generations::JBSP1 Age groups: children Birmingham, Karen Pioneering ethics in a longitudinal study |
| title | Pioneering ethics in a longitudinal study |
| title_full | Pioneering ethics in a longitudinal study |
| title_fullStr | Pioneering ethics in a longitudinal study |
| title_full_unstemmed | Pioneering ethics in a longitudinal study |
| title_short | Pioneering ethics in a longitudinal study |
| title_sort | pioneering ethics in a longitudinal study |
| topic | 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 thema EDItEUR::J Society and Social Sciences::JB Society and culture: general::JBS Social groups, communities and identities::JBSP Age groups and generations::JBSP1 Age groups: children |
| topic_facet | 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 thema EDItEUR::J Society and Social Sciences::JB Society and culture: general::JBS Social groups, communities and identities::JBSP Age groups and generations::JBSP1 Age groups: children |
| url | 643791 |
| work_keys_str_mv | AT birminghamkaren pioneeringethicsinalongitudinalstudy |