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180215s2018 enk o 00 0 eng d |
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|a 9781447340423
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|a MdBmJHUP
|c MdBmJHUP
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|a Birmingham, Karen.
|4 aut
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245 |
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|a Pioneering Ethics in a Longitudinal Study :
|b The early development of the ALSPAC Ethics and Law Committee
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264 |
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|a Bristol :
|b Policy Press,
|c 2018.
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264 |
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3 |
|a Baltimore, Md. :
|b Project MUSE,
|c 0000
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|c ©2018.
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300 |
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|a 1 online resource (136 pages).
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336 |
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|a text
|b txt
|2 rdacontent
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|a computer
|b c
|2 rdamedia
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338 |
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|a online resource
|b cr
|2 rdacarrier
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506 |
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|a Open Access
|f Unrestricted online access
|2 star
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520 |
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|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 ALSPACdeveloped."
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588 |
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|a Description based on print version record.
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650 |
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7 |
|a Research
|x Moral and ethical aspects.
|2 fast
|0 (OCoLC)fst01095225
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650 |
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7 |
|a Society and social sciences Society and social sciences.
|2 bicssc
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650 |
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7 |
|a Society and culture: general.
|2 bicssc
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650 |
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7 |
|a Social groups.
|2 bicssc
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650 |
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7 |
|a SOCIAL SCIENCE / Research.
|2 bisacsh
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650 |
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7 |
|a Age groups: children.
|2 bicssc
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650 |
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7 |
|a Age groups.
|2 bicssc
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650 |
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6 |
|a Recherche
|x Aspect moral.
|
650 |
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6 |
|a Longitudinal method
|x Moral and ethical aspects.
|
650 |
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6 |
|a Families
|x Research
|x Moral and ethical aspects.
|
650 |
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0 |
|a Research
|x Moral and ethical aspects.
|
650 |
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0 |
|a Longitudinal method
|x Moral and ethical aspects.
|
650 |
|
0 |
|a Families
|x Research
|x Moral and ethical aspects.
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655 |
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7 |
|a Electronic books.
|2 local
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710 |
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|a Project Muse.
|e distributor
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830 |
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|a Book collections on Project MUSE.
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856 |
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|z Texto completo
|u https://projectmuse.uam.elogim.com/book/80572/
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