Governing Genetic Databases: Challenges Facing Research Regulation and Practice.
This paper reports on the initial findings of an interdisciplinary research project on the governance of human genetic databases in England and Wales. The number of biosample and information collections has expanded, yet considerable legal uncertainty surrounds their definition, collection, storage,...
| Publicado en: | Journal of Law & Society Vol. 34; no. 2; pp. 163 - 190 |
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| Autores principales: | , , , , |
| Formato: | Artículo |
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Wiley-Blackwell
Jun2007
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| Acceso en línea: | Ver este registro en EBSCOhost |
| fields | @attributes: recordID: 1 pdfLink: plink: https://search.ebscohost.com/login.aspx?direct=true&db=hlh&AN=24998618&site=ehost-live header: @attributes: shortDbName: hlh uiTerm: 24998618 longDbName: Humanities International Complete uiTag: AN controlInfo: bkinfo: jinfo: jid: 0263323X 7Q3 jtl: Journal of Law & Society issn: 0263323X maglogo: Y pubinfo: dt: Jun2007 vid: 34 iid: 2 pid: 480 pub: Wiley-Blackwell artinfo: ui: 24998618 10.1111/j.1467-6478.2007.00387.x ppf: 163 ppct: 27 formats: fmt: @attributes: type: P size: 162KB tig: atl: Governing Genetic Databases: Challenges Facing Research Regulation and Practice. aug: au: Gibbons, Susan M. C. Kaye, Jane Smart, Andrew Heeney, Catherine Parker, Michael affil: Ethox Centre, University of Oxford, Gibson Building/Block 21, Radcliffe Infirmary, Woodstock Road, Oxford OX2 6HA, England Bath Spa University, Newton Park, Newton St Loe, Bath BA2 9BN, England su: Human genetics Databases Research laws Legal research Wales England sug: subj: Wales England Human genetics Databases Research laws Legal research ab: This paper reports on the initial findings of an interdisciplinary research project on the governance of human genetic databases in England and Wales. The number of biosample and information collections has expanded, yet considerable legal uncertainty surrounds their definition, collection, storage, management, and use which could inhibit research and clinical practice, while failing to protect the rights and interests of all stakeholders. We report some initial findings from the legal research and identify major challenges associated with defining ‘genetic databases’. We identify a wide range of relevant instruments and regulatory actors, and suggest that none adequately addresses the challenges posed by contemporary research techniques or the‘corporeal’and‘informational’materials used in the genetic databases context. This preliminary analysis seriously questions the efficacy of the current regulatory framework and concludes that developing an appropriate governance framework for the creation, maintenance, and use of genetic databases requires the bringing together of legal analysis with good quality empirical evidence. pubtype: Academic Journal doctype: Article src: R language: English refInfo: copyright: @attributes: flag: Y custom: Copyright of Journal of Law & Society is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites without the copyright holder's express written permission. Additionally, content may not be used with any artificial intelligence tools or machine learning technologies. However, users may print, download, or email articles for individual use. item: Journal of Law & Society holder: Wiley-Blackwell dt: @attributes: year: 2007 holdings: @attributes: islocal: N |
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