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1 online resource (xxii, 204 pages) |
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text txt rdacontent |
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computer c rdamedia |
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online resource cr rdacarrier |
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data file |
| Summary |
"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." |
| Language |
English. |
| Access |
Open Access EbpS |
| Contents |
Intro -- PIONEERING ETHICS IN A LONGITUDINAL STUDY -- Contents -- List of figures and photographs -- Figures -- Photographs -- List of abbreviations -- Authors and contributors, with current positions -- Acknowledgements -- Foreword -- Preface -- Personal perspective -- Introduction -- Part One . ALSPAC Ethics and Law Committee: a new concept -- 1. Preliminaries and pioneers: framing the questions -- 2. Informal or casual: an unusual style -- Study participants -- Length of service -- Minutes -- 3. Advisory to independent: a missed opportunity -- Institutional Review Board status -- 4. Bureaucratic battles: liaison with Local Research Ethics Committees -- Part Two .Policy development: a case of case law -- 5. Confidentiality and anonymity: a rod for their own backs -- The 'Ethical Divide' -- The '500 rule' -- Questionnaires -- Text data -- Genetic data -- Data access -- 6. Informed consent: too much information -- From whom? -- To what and by what process? -- How much explanation is necessary? -- Other aspects of consent -- 7. Child protection: an observational study? -- Family Liaison Team -- Research clinics -- Psychologists' sessions -- Questionnaires -- 8. Disclosure of individual results: foreseen feedback and incidental findings -- Foreseen feedback -- Incidental findings -- 9. Disclosure of individual results: participants' requests -- 10. Participants' problems: people not policies -- Requests for help -- Partner issues -- Abuse of clinic staff -- Child's death -- Miscarriage -- Guarantee of anonymity -- 11. External databases: anonymous linkage -- Health records -- Education records -- Part Three. Beyond policy: a broad remit -- 12. Retention of the Cohort: incentives or inducements -- Incentives -- The Discovery Club -- The prize draw -- 13. Commercial collaborations: selling our souls. |
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Medical Research Council terms and conditions of grant -- Genetic Knowledge Park -- Phenome scan -- 14. Comprehensive oversight: undocumented and unacknowledged -- Pilot studies -- Questionnaires -- Research clinics -- Sub-studies -- Comprehensive oversight -- 15. Influence beyond ALSPAC: extension of expertise -- European Society of Human Genetics -- House of Lords Science and Technology Sub-Committee -- Joint Human Genetics Commission and National Screening Committee -- UK Biobank and the Nuffield Trust -- National Children's Study -- Conclusions -- Postscript -- Notes -- References -- Appendix 1: ALSPAC Steering Committee: founding members -- Appendix 2: ALSPAC Ethics and Law Committee members: appointed 1990-2005 -- Appendix 3: Letter to participants: further information concerning confidentiality -- Appendix 4: Young Mothers paper by Elizabeth Mumford -- Appendix 5: The Children of the Nineties study (ALSPAC) and collaboration with pharmaceutical companies -- Principles underlying research in ALSPAC -- Support for research in ALSPAC -- Benefiting from the results of ALSPAC's research -- Adding value to ALSPAC -- Conclusion -- Index. |
| Subject |
Research -- Moral and ethical aspects.
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Families -- Research -- Moral and ethical aspects.
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Longitudinal method -- Moral and ethical aspects.
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Recherche -- Aspect moral.
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Familles -- Recherche -- Aspect moral.
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Méthode longitudinale -- Aspect moral.
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Age groups.
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Age groups: children.
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Social groups.
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Society and culture: general.
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Society and social sciences Society and social sciences.
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SOCIAL SCIENCE -- Research.
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Research -- Moral and ethical aspects
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| Indexed Term |
Avon Longitudinal Study of Parents and Children |
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Children of the 90s |
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Genetic Epidemiology |
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Longitudinal Birth Cohorts |
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Research Ethics Committees |
| Genre/Form |
Electronic books.
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| Other Form: |
Print version: 1447340426 |
| ISBN |
9781447340423 (electronic bk.) |
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1447340426 (electronic bk.) |
| Standard No. |
10.1332/9781447340423 doi |
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