Human genetic banking: altruism, benefit and consent.

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    • Abstract:
      This article considers how we should frame the ethical issues raised by current proposals for large-scale genebanks with on-going links to medical and lifestyle data, such as the Wellcome Trust and Medical Research Council's 'UK Biobank'. As recent scandals such as Alder Hey have emphasised, there are complex issues concerning the informed consent of donors that need to be carefully considered. However, we believe that a preoccupation with informed consent obscures important questions about the purposes to which such collections are put, not least that they may be only haphazardly used for research (especially that of commercial interest)--an end that would not fairly reflect the original altruistic motivation of donors, and the trust they must invest. We therefore argue that custodians of such databases take on a weighty pro-active duty, to encourage public debate about the ends of such collections and to sponsor research that reflects publicly agreed priorities and provides public benefits. [ABSTRACT FROM AUTHOR]
    • Abstract:
      Copyright of New Genetics & Society is the property of Routledge and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)
    • Author Affiliations:
      1Institute for Environment, Philosophy & Public Policy (IEPPP), Furness College, Lancaster University, Lancaster, LA1 4YG, UK
      2Centre for Professional Ethics, University of Central Lancashire, Preston, PR1 2HE, UK
    • ISSN:
      1463-6778
    • Accession Number:
      10.1080/1463677042000189598
    • Accession Number:
      13310237
  • Citations
    • ABNT:
      WILLIAMS, G.; SCHROEDER, D. Human genetic banking: altruism, benefit and consent. New Genetics & Society, [s. l.], v. 23, n. 1, p. 89–103, 2004. DOI 10.1080/1463677042000189598. Disponível em: http://search.ebscohost.com/login.aspx?direct=true&site=eds-live&db=asn&AN=13310237&custid=s8280428. Acesso em: 10 dez. 2019.
    • AMA:
      Williams G, Schroeder D. Human genetic banking: altruism, benefit and consent. New Genetics & Society. 2004;23(1):89-103. doi:10.1080/1463677042000189598.
    • APA:
      Williams, G., & Schroeder, D. (2004). Human genetic banking: altruism, benefit and consent. New Genetics & Society, 23(1), 89–103. https://doi.org/10.1080/1463677042000189598
    • Chicago/Turabian: Author-Date:
      Williams, Garrath, and Doris Schroeder. 2004. “Human Genetic Banking: Altruism, Benefit and Consent.” New Genetics & Society 23 (1): 89–103. doi:10.1080/1463677042000189598.
    • Harvard:
      Williams, G. and Schroeder, D. (2004) ‘Human genetic banking: altruism, benefit and consent’, New Genetics & Society, 23(1), pp. 89–103. doi: 10.1080/1463677042000189598.
    • Harvard: Australian:
      Williams, G & Schroeder, D 2004, ‘Human genetic banking: altruism, benefit and consent’, New Genetics & Society, vol. 23, no. 1, pp. 89–103, viewed 10 December 2019, .
    • MLA:
      Williams, Garrath, and Doris Schroeder. “Human Genetic Banking: Altruism, Benefit and Consent.” New Genetics & Society, vol. 23, no. 1, Apr. 2004, pp. 89–103. EBSCOhost, doi:10.1080/1463677042000189598.
    • Chicago/Turabian: Humanities:
      Williams, Garrath, and Doris Schroeder. “Human Genetic Banking: Altruism, Benefit and Consent.” New Genetics & Society 23, no. 1 (April 2004): 89–103. doi:10.1080/1463677042000189598.
    • Vancouver/ICMJE:
      Williams G, Schroeder D. Human genetic banking: altruism, benefit and consent. New Genetics & Society [Internet]. 2004 Apr [cited 2019 Dec 10];23(1):89–103. Available from: http://search.ebscohost.com/login.aspx?direct=true&site=eds-live&db=asn&AN=13310237&custid=s8280428