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 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." Ausführliche Beschreibung

Gespeichert in:

Autor*in:	Birmingham, Karen [verfasserIn]

Format:	E-Book
Sprache:	Englisch

Erschienen:	Bristol: Policy Press ; 2018

Rechteinformationen:	Open Access Creative Commons ; https://creativecommons.org/licenses/by-nc/4.0

Schlagwörter:	Age groups: children

Umfang:	1 Online-Ressource (136 p.)

Links:	Link aufrufen Link aufrufen Link aufrufen
ISBN:	978-1-4473-4042-3

Katalog-ID:	1836361610

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spelling	9781447340423 978-1-4473-4042-3 (DE-627)1836361610 (DE-599)KEP062073508 (OCoLC)1135345173 (OAPEN)30704 (EBP)062073508 DE-627 eng DE-627 rda eng JFSP1 bicssc JBSP1 bicssc Birmingham, Karen verfasserin aut Pioneering ethics in a longitudinal study Bristol Policy Press 2018 1 Online-Ressource (136 p.) Text txt rdacontent Computermedien c rdamedia Online-Ressource cr rdacarrier Open Access Unrestricted online access star "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." Creative Commons https://creativecommons.org/licenses/by-nc/4.0 cc English Age groups: children https://library.oapen.org/bitstream/id/96074c09-925d-42d9-b7a2-b60493fb7239/643791.pdf X:OAPEN Verlag OAPEN Library: download the publication kostenfrei http://library.oapen.org/handle/20.500.12657/30704 X:OAPEN Verlag OAPEN Library: description of the publication kostenfrei ZDB-94-OAL GBV_ILN_22 ISIL_DE-18 SYSFLAG_1 GBV_KXP GBV_ILN_23 ISIL_DE-830 GBV_ILN_30 ISIL_DE-104 GBV_ILN_31 ISIL_DE-27 GBV_ILN_34 ISIL_DE-18-302 GBV_ILN_39 ISIL_DE-547 GBV_ILN_40 ISIL_DE-7 GBV_ILN_63 ISIL_DE-Wim2 GBV_ILN_65 ISIL_DE-3 GBV_ILN_70 ISIL_DE-89 GBV_ILN_72 ISIL_DE-35 GBV_ILN_95 ISIL_DE-542 GBV_ILN_110 ISIL_DE-Luen4 GBV_ILN_136 ISIL_DE-Wis1 GBV_ILN_147 ISIL_DE-Fl3 GBV_ILN_161 ISIL_DE-960 GBV_ILN_187 ISIL_DE-Ki95 GBV_ILN_213 ISIL_DE-551 GBV_ILN_230 ISIL_DE-552 GBV_ILN_283 ISIL_DE-Ha163 GBV_ILN_293 ISIL_DE-960-3 GBV_ILN_370 ISIL_DE-1373 GBV_ILN_603 ISIL_DE-B1556 GBV_ILN_808 GBV_ILN_2403 ISIL_DE-LFER BO 22 01 0018 4280017387 OLR-ZDB-94-OAL OAPEN Library zu 01-03-23 23 01 0830 4280572186 OLR-OAPEN f z 01-03-23 30 01 0104 4280931771 GBV-OAPEN z 01-03-23 31 01 0027 4280203873 z 01-03-23 34 01 3551 4278771401 OLR-OAPEN zi002 01-03-23 39 01 0547 4281122575 GBV-OAPEN ke 01-03-23 40 01 0007 4279839905 OLR-OAPEN xsn 01-03-23 63 01 3401 4281502025 E-Books LF GBV-OAPEN z 01-03-23 65 01 0003 4281709630 OLR-OAPEN z 01-03-23 70 01 0089 4280393435 OLR-OAPEN-OA OAPEN Online Library Open Access eBook z 01-03-23 72 01 0035 4278590067 OLR-OAPEN-OA OAPEN Online Library Open Access eBook z 01-03-23 95 01 3095 4343113108 OLR-OAL Vervielfältigungen (z.B. Kopien, Downloads) sind nur von einzelnen Kapiteln oder Seiten und nur zum eigenen wissenschaftlichen Gebrauch erlaubt. Die Weitergabe an Dritte sowie systematisches Downloaden sind untersagt. z 24-06-23 110 01 3110 4281307079 OLR-GBV-OAPEN Open Access z 01-03-23 136 01 3526 4279480974 OLR-OAPEN z 01-03-23 147 01 3528 4281947582 OLR-OAPEN frei verfügbar für Europa-Universität Flensburg, Hochschule Flensburg und Zentrale Hochschulbibliothek Vervielfältigungen (z.B. Kopien, Downloads) sind nur von einzelnen Kapiteln oder Seiten und nur zum eigenen wissenschaftlichen Gebrauch erlaubt. Die Weitergabe an Dritte sowie systematisches Downloaden sind untersagt. z 01-03-23 161 01 0960 4278027443 OLR-OAPEN OAPEN Online Library Open Access eBook z 28-02-23 187 01 3520 4278396481 JSTOR Open Access eBook z 28-02-23 213 01 0551 4279126577 OLR-OAPEN OAPEN Online Library Open Access eBook z 01-03-23 230 01 0552 4279303762 OLR-OAPEN OAPEN Online Library Open Access eBook z 01-03-23 283 01 3283 4279662673 OLR-OAL z 01-03-23 293 01 3293 4278205406 OLR-OAPEN OAPEN Online Library Open Access eBook z 28-02-23 370 01 4370 4278949146 OLR-FREE Kostenloser Zugriff z 01-03-23 603 01 4603 4277849636 OLR-OAPEN Bitte beachten Sie die Nutzungsbedingungen und Copyright-Bestimmungen des Verlages/Herausgebers. z 28-02-23 808 01 4808 4280751374 OLR-OAPEN OAPEN Library zg 01-03-23 2403 01 DE-LFER 430712183X 00 --%%-- --%%-- n --%%-- l01 10-04-23 22 01 0018 Volltextzugang http://library.oapen.org/handle/20.500.12657/30704 23 01 0830 http://library.oapen.org/handle/20.500.12657/30704 30 01 0104 Open Access http://library.oapen.org/handle/20.500.12657/30704 31 01 0027 eBook GBV-OAPEN http://library.oapen.org/handle/20.500.12657/30704 34 01 3551 OpenAccess http://library.oapen.org/handle/20.500.12657/30704 40 01 0007 Volltext, Open Access http://library.oapen.org/handle/20.500.12657/30704 63 01 3401 E-Book http://library.oapen.org/handle/20.500.12657/30704 65 01 0003 Open Access http://library.oapen.org/handle/20.500.12657/30704 65 01 0003 Dieser Titel ist Teil einer Datenbank http://www.bibliothek.uni-regensburg.de/dbinfo/detail.php?titel_id=10728&bib_id=ulb_hal 70 01 0089 http://library.oapen.org/handle/20.500.12657/30704 LF 72 01 0035 http://library.oapen.org/handle/20.500.12657/30704 95 01 3095 http://library.oapen.org/handle/20.500.12657/30704 110 01 3110 Open Access http://library.oapen.org/handle/20.500.12657/30704 136 01 3526 Open Access http://library.oapen.org/handle/20.500.12657/30704 147 01 3528 http://library.oapen.org/handle/20.500.12657/30704 161 01 0960 http://library.oapen.org/handle/20.500.12657/30704 LF 187 01 3520 http://library.oapen.org/handle/20.500.12657/30704 213 01 0551 http://library.oapen.org/handle/20.500.12657/30704 230 01 0552 http://library.oapen.org/handle/20.500.12657/30704 283 01 3283 http://library.oapen.org/handle/20.500.12657/30704 293 01 3293 http://library.oapen.org/handle/20.500.12657/30704 LF 370 01 4370 http://library.oapen.org/handle/20.500.12657/30704 603 01 4603 http://library.oapen.org/handle/20.500.12657/30704 808 01 4808 Volltextzugang http://library.oapen.org/handle/20.500.12657/30704 2403 01 DE-LFER https://library.oapen.org/bitstream/id/96074c09-925d-42d9-b7a2-b60493fb7239/643791.pdf 31 01 0027 00 eBook GBV-OAPEN 22 01 0018 OLR-ZDB-94-OAL 23 01 0830 OLR-OAPEN 30 01 0104 GBV-OAPEN 34 01 3551 OLR-OAPEN 39 01 0547 GBV-OAPEN 39 01 0547 LF 40 01 0007 OLR-OAPEN 63 01 3401 E-Books LF GBV-OAPEN 65 01 0003 OLR-OAPEN 70 01 0089 OLR-OAPEN-OA 72 01 0035 OLR-OAPEN-OA 95 01 3095 OLR-OAL 110 01 3110 OLR-GBV-OAPEN 136 01 3526 OLR-OAPEN 147 01 3528 OLR-OAPEN 161 01 0960 OLR-OAPEN 213 01 0551 OLR-OAPEN 230 01 0552 OLR-OAPEN 283 01 3283 OLR-OAL 293 01 3293 OLR-OAPEN 370 01 4370 OLR-FREE 370 01 4370 olr-ebook GBV-OAPEN 603 01 4603 OLR-OAPEN 808 01 4808 OLR-OAPEN
allfields_unstemmed	9781447340423 978-1-4473-4042-3 (DE-627)1836361610 (DE-599)KEP062073508 (OCoLC)1135345173 (OAPEN)30704 (EBP)062073508 DE-627 eng DE-627 rda eng JFSP1 bicssc JBSP1 bicssc Birmingham, Karen verfasserin aut Pioneering ethics in a longitudinal study Bristol Policy Press 2018 1 Online-Ressource (136 p.) Text txt rdacontent Computermedien c rdamedia Online-Ressource cr rdacarrier Open Access Unrestricted online access star "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." Creative Commons https://creativecommons.org/licenses/by-nc/4.0 cc English Age groups: children https://library.oapen.org/bitstream/id/96074c09-925d-42d9-b7a2-b60493fb7239/643791.pdf X:OAPEN Verlag OAPEN Library: download the publication kostenfrei http://library.oapen.org/handle/20.500.12657/30704 X:OAPEN Verlag OAPEN Library: description of the publication kostenfrei ZDB-94-OAL GBV_ILN_22 ISIL_DE-18 SYSFLAG_1 GBV_KXP GBV_ILN_23 ISIL_DE-830 GBV_ILN_30 ISIL_DE-104 GBV_ILN_31 ISIL_DE-27 GBV_ILN_34 ISIL_DE-18-302 GBV_ILN_39 ISIL_DE-547 GBV_ILN_40 ISIL_DE-7 GBV_ILN_63 ISIL_DE-Wim2 GBV_ILN_65 ISIL_DE-3 GBV_ILN_70 ISIL_DE-89 GBV_ILN_72 ISIL_DE-35 GBV_ILN_95 ISIL_DE-542 GBV_ILN_110 ISIL_DE-Luen4 GBV_ILN_136 ISIL_DE-Wis1 GBV_ILN_147 ISIL_DE-Fl3 GBV_ILN_161 ISIL_DE-960 GBV_ILN_187 ISIL_DE-Ki95 GBV_ILN_213 ISIL_DE-551 GBV_ILN_230 ISIL_DE-552 GBV_ILN_283 ISIL_DE-Ha163 GBV_ILN_293 ISIL_DE-960-3 GBV_ILN_370 ISIL_DE-1373 GBV_ILN_603 ISIL_DE-B1556 GBV_ILN_808 GBV_ILN_2403 ISIL_DE-LFER BO 22 01 0018 4280017387 OLR-ZDB-94-OAL OAPEN Library zu 01-03-23 23 01 0830 4280572186 OLR-OAPEN f z 01-03-23 30 01 0104 4280931771 GBV-OAPEN z 01-03-23 31 01 0027 4280203873 z 01-03-23 34 01 3551 4278771401 OLR-OAPEN zi002 01-03-23 39 01 0547 4281122575 GBV-OAPEN ke 01-03-23 40 01 0007 4279839905 OLR-OAPEN xsn 01-03-23 63 01 3401 4281502025 E-Books LF GBV-OAPEN z 01-03-23 65 01 0003 4281709630 OLR-OAPEN z 01-03-23 70 01 0089 4280393435 OLR-OAPEN-OA OAPEN Online Library Open Access eBook z 01-03-23 72 01 0035 4278590067 OLR-OAPEN-OA OAPEN Online Library Open Access eBook z 01-03-23 95 01 3095 4343113108 OLR-OAL Vervielfältigungen (z.B. Kopien, Downloads) sind nur von einzelnen Kapiteln oder Seiten und nur zum eigenen wissenschaftlichen Gebrauch erlaubt. Die Weitergabe an Dritte sowie systematisches Downloaden sind untersagt. z 24-06-23 110 01 3110 4281307079 OLR-GBV-OAPEN Open Access z 01-03-23 136 01 3526 4279480974 OLR-OAPEN z 01-03-23 147 01 3528 4281947582 OLR-OAPEN frei verfügbar für Europa-Universität Flensburg, Hochschule Flensburg und Zentrale Hochschulbibliothek Vervielfältigungen (z.B. Kopien, Downloads) sind nur von einzelnen Kapiteln oder Seiten und nur zum eigenen wissenschaftlichen Gebrauch erlaubt. Die Weitergabe an Dritte sowie systematisches Downloaden sind untersagt. z 01-03-23 161 01 0960 4278027443 OLR-OAPEN OAPEN Online Library Open Access eBook z 28-02-23 187 01 3520 4278396481 JSTOR Open Access eBook z 28-02-23 213 01 0551 4279126577 OLR-OAPEN OAPEN Online Library Open Access eBook z 01-03-23 230 01 0552 4279303762 OLR-OAPEN OAPEN Online Library Open Access eBook z 01-03-23 283 01 3283 4279662673 OLR-OAL z 01-03-23 293 01 3293 4278205406 OLR-OAPEN OAPEN Online Library Open Access eBook z 28-02-23 370 01 4370 4278949146 OLR-FREE Kostenloser Zugriff z 01-03-23 603 01 4603 4277849636 OLR-OAPEN Bitte beachten Sie die Nutzungsbedingungen und Copyright-Bestimmungen des Verlages/Herausgebers. z 28-02-23 808 01 4808 4280751374 OLR-OAPEN OAPEN Library zg 01-03-23 2403 01 DE-LFER 430712183X 00 --%%-- --%%-- n --%%-- l01 10-04-23 22 01 0018 Volltextzugang http://library.oapen.org/handle/20.500.12657/30704 23 01 0830 http://library.oapen.org/handle/20.500.12657/30704 30 01 0104 Open Access http://library.oapen.org/handle/20.500.12657/30704 31 01 0027 eBook GBV-OAPEN http://library.oapen.org/handle/20.500.12657/30704 34 01 3551 OpenAccess http://library.oapen.org/handle/20.500.12657/30704 40 01 0007 Volltext, Open Access http://library.oapen.org/handle/20.500.12657/30704 63 01 3401 E-Book http://library.oapen.org/handle/20.500.12657/30704 65 01 0003 Open Access http://library.oapen.org/handle/20.500.12657/30704 65 01 0003 Dieser Titel ist Teil einer Datenbank http://www.bibliothek.uni-regensburg.de/dbinfo/detail.php?titel_id=10728&bib_id=ulb_hal 70 01 0089 http://library.oapen.org/handle/20.500.12657/30704 LF 72 01 0035 http://library.oapen.org/handle/20.500.12657/30704 95 01 3095 http://library.oapen.org/handle/20.500.12657/30704 110 01 3110 Open Access http://library.oapen.org/handle/20.500.12657/30704 136 01 3526 Open Access http://library.oapen.org/handle/20.500.12657/30704 147 01 3528 http://library.oapen.org/handle/20.500.12657/30704 161 01 0960 http://library.oapen.org/handle/20.500.12657/30704 LF 187 01 3520 http://library.oapen.org/handle/20.500.12657/30704 213 01 0551 http://library.oapen.org/handle/20.500.12657/30704 230 01 0552 http://library.oapen.org/handle/20.500.12657/30704 283 01 3283 http://library.oapen.org/handle/20.500.12657/30704 293 01 3293 http://library.oapen.org/handle/20.500.12657/30704 LF 370 01 4370 http://library.oapen.org/handle/20.500.12657/30704 603 01 4603 http://library.oapen.org/handle/20.500.12657/30704 808 01 4808 Volltextzugang http://library.oapen.org/handle/20.500.12657/30704 2403 01 DE-LFER https://library.oapen.org/bitstream/id/96074c09-925d-42d9-b7a2-b60493fb7239/643791.pdf 31 01 0027 00 eBook GBV-OAPEN 22 01 0018 OLR-ZDB-94-OAL 23 01 0830 OLR-OAPEN 30 01 0104 GBV-OAPEN 34 01 3551 OLR-OAPEN 39 01 0547 GBV-OAPEN 39 01 0547 LF 40 01 0007 OLR-OAPEN 63 01 3401 E-Books LF GBV-OAPEN 65 01 0003 OLR-OAPEN 70 01 0089 OLR-OAPEN-OA 72 01 0035 OLR-OAPEN-OA 95 01 3095 OLR-OAL 110 01 3110 OLR-GBV-OAPEN 136 01 3526 OLR-OAPEN 147 01 3528 OLR-OAPEN 161 01 0960 OLR-OAPEN 213 01 0551 OLR-OAPEN 230 01 0552 OLR-OAPEN 283 01 3283 OLR-OAL 293 01 3293 OLR-OAPEN 370 01 4370 OLR-FREE 370 01 4370 olr-ebook GBV-OAPEN 603 01 4603 OLR-OAPEN 808 01 4808 OLR-OAPEN
allfieldsGer	9781447340423 978-1-4473-4042-3 (DE-627)1836361610 (DE-599)KEP062073508 (OCoLC)1135345173 (OAPEN)30704 (EBP)062073508 DE-627 eng DE-627 rda eng JFSP1 bicssc JBSP1 bicssc Birmingham, Karen verfasserin aut Pioneering ethics in a longitudinal study Bristol Policy Press 2018 1 Online-Ressource (136 p.) Text txt rdacontent Computermedien c rdamedia Online-Ressource cr rdacarrier Open Access Unrestricted online access star "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." 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allfieldsSound	9781447340423 978-1-4473-4042-3 (DE-627)1836361610 (DE-599)KEP062073508 (OCoLC)1135345173 (OAPEN)30704 (EBP)062073508 DE-627 eng DE-627 rda eng JFSP1 bicssc JBSP1 bicssc Birmingham, Karen verfasserin aut Pioneering ethics in a longitudinal study Bristol Policy Press 2018 1 Online-Ressource (136 p.) Text txt rdacontent Computermedien c rdamedia Online-Ressource cr rdacarrier Open Access Unrestricted online access star "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." Creative Commons https://creativecommons.org/licenses/by-nc/4.0 cc English Age groups: children https://library.oapen.org/bitstream/id/96074c09-925d-42d9-b7a2-b60493fb7239/643791.pdf X:OAPEN Verlag OAPEN Library: download the publication kostenfrei http://library.oapen.org/handle/20.500.12657/30704 X:OAPEN Verlag OAPEN Library: description of the publication kostenfrei ZDB-94-OAL GBV_ILN_22 ISIL_DE-18 SYSFLAG_1 GBV_KXP GBV_ILN_23 ISIL_DE-830 GBV_ILN_30 ISIL_DE-104 GBV_ILN_31 ISIL_DE-27 GBV_ILN_34 ISIL_DE-18-302 GBV_ILN_39 ISIL_DE-547 GBV_ILN_40 ISIL_DE-7 GBV_ILN_63 ISIL_DE-Wim2 GBV_ILN_65 ISIL_DE-3 GBV_ILN_70 ISIL_DE-89 GBV_ILN_72 ISIL_DE-35 GBV_ILN_95 ISIL_DE-542 GBV_ILN_110 ISIL_DE-Luen4 GBV_ILN_136 ISIL_DE-Wis1 GBV_ILN_147 ISIL_DE-Fl3 GBV_ILN_161 ISIL_DE-960 GBV_ILN_187 ISIL_DE-Ki95 GBV_ILN_213 ISIL_DE-551 GBV_ILN_230 ISIL_DE-552 GBV_ILN_283 ISIL_DE-Ha163 GBV_ILN_293 ISIL_DE-960-3 GBV_ILN_370 ISIL_DE-1373 GBV_ILN_603 ISIL_DE-B1556 GBV_ILN_808 GBV_ILN_2403 ISIL_DE-LFER BO 22 01 0018 4280017387 OLR-ZDB-94-OAL OAPEN Library zu 01-03-23 23 01 0830 4280572186 OLR-OAPEN f z 01-03-23 30 01 0104 4280931771 GBV-OAPEN z 01-03-23 31 01 0027 4280203873 z 01-03-23 34 01 3551 4278771401 OLR-OAPEN zi002 01-03-23 39 01 0547 4281122575 GBV-OAPEN ke 01-03-23 40 01 0007 4279839905 OLR-OAPEN xsn 01-03-23 63 01 3401 4281502025 E-Books LF GBV-OAPEN z 01-03-23 65 01 0003 4281709630 OLR-OAPEN z 01-03-23 70 01 0089 4280393435 OLR-OAPEN-OA OAPEN Online Library Open Access eBook z 01-03-23 72 01 0035 4278590067 OLR-OAPEN-OA OAPEN Online Library Open Access eBook z 01-03-23 95 01 3095 4343113108 OLR-OAL Vervielfältigungen (z.B. Kopien, Downloads) sind nur von einzelnen Kapiteln oder Seiten und nur zum eigenen wissenschaftlichen Gebrauch erlaubt. Die Weitergabe an Dritte sowie systematisches Downloaden sind untersagt. z 24-06-23 110 01 3110 4281307079 OLR-GBV-OAPEN Open Access z 01-03-23 136 01 3526 4279480974 OLR-OAPEN z 01-03-23 147 01 3528 4281947582 OLR-OAPEN frei verfügbar für Europa-Universität Flensburg, Hochschule Flensburg und Zentrale Hochschulbibliothek Vervielfältigungen (z.B. Kopien, Downloads) sind nur von einzelnen Kapiteln oder Seiten und nur zum eigenen wissenschaftlichen Gebrauch erlaubt. 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topic_title	31 01 0027 00 eBook GBV-OAPEN Pioneering ethics in a longitudinal study Age groups: children
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title_auth	Pioneering ethics in a longitudinal study
abstract	"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."
abstractGer	"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."
abstract_unstemmed	"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."
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