Human genetic banking : altruism, benefit and consent

New Genetics and Society 23 (1):89-103 (2004)
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
Keywords No keywords specified (fix it)
Categories (categorize this paper)
Options
 Save to my reading list
Follow the author(s)
My bibliography
Export citation
Find it on Scholar
Edit this record
Mark as duplicate
Revision history Request removal from index Translate to english
 
Download options
PhilPapers Archive


Upload a copy of this paper     Check publisher's policy on self-archival     Papers currently archived: 9,357
External links
  •   Try with proxy.
  • Through your library Configure
    References found in this work BETA

    No references found.

    Citations of this work BETA

    No citations found.

    Similar books and articles
    O. O'Neill (2001). Informed Consent and Genetic Information. Studies in History and Philosophy of Science Part C 32 (4):689-704.
    Karen J. Maschke (2010). Wanted: Human Biospecimens. Hastings Center Report 40 (5):21-23.
    Analytics

    Monthly downloads

    Added to index

    2011-01-29

    Total downloads

    8 ( #138,555 of 1,088,403 )

    Recent downloads (6 months)

    1 ( #69,601 of 1,088,403 )

    How can I increase my downloads?

    My notes
    Sign in to use this feature


    Discussion
    Start a new thread
    Order:
    There  are no threads in this forum
    Nothing in this forum yet.