David Bourget (Western Ontario)
David Chalmers (ANU, NYU)
Rafael De Clercq
Ezio Di Nucci
Jonathan Jenkins Ichikawa
Jack Alan Reynolds
Learn more about PhilPapers
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 —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)|
Setup an account with your affiliations in order to access resources via your University's proxy server
Configure custom proxy (use this if your affiliation does not provide a proxy)
|Through your library||
References found in this work BETA
No references found.
Citations of this work BETA
No citations found.
Similar books and articles
Timothy Caulfield, Ross Upshur & Abdallah Daar (2003). DNA Databanks and Consent: A Suggested Policy Option Involving an Authorization Model. [REVIEW] BMC Medical Ethics 4 (1):1-4.
Oonagh Corrigan (ed.) (2009). The Limits of Consent: A Socio-Ethical Approach to Human Subject Research in Medicine. Oxford University Press.
Luciana Caenazzo, Pamela Tozzo & Renzo Pegoraro (2013). Biobanking Research on Oncological Residual Material: A Framework Between the Rights of the Individual and the Interest of Society. [REVIEW] BMC Medical Ethics 14 (1):17.
K. S. Steinsbekk & B. Solberg (2011). Biobanks--When is Re-Consent Necessary? Public Health Ethics 4 (3):236-250.
Mairi Levitt & Sue Weldon, A Well Placed Trust? Public Perceptions of the Governance of DNA Databases.
Garrath Williams (2012). Children as Means and Ends in Large-Scale Medical Research. Bioethics 26 (8):422-430.
O. O'Neill (2001). Informed Consent and Genetic Information. Studies in History and Philosophy of Science Part C 32 (4):689-704.
Xinqing Zhang (2009). Bioethical Regulation and Human Genetic Databases in Mainland China : A National Survey Among Scientists and Regulators on Consent Issues and Benefit-Sharing. In Margaret Sleeboom-Faulkner (ed.), Human Genetic Biobanks in Asia: Politics of Trust and Scientific Advancement. Routledge
Robert F. Weir & Jay R. Horton (1995). Genetic Research, Adolescents, and Informed Consent. Theoretical Medicine and Bioethics 16 (4).
Judy Allen & Beverley Mcnamara (2011). Reconsidering the Value of Consent in Biobank Research. Bioethics 25 (3):155-166.
Min Liu & Qingli Hu (2014). A Proposed Approach to Informed Consent for Biobanks in China. Bioethics 28 (4):181-186.
Asya Al-Riyami, Deepali Jaju, Sanjay Jaju & Henry J. Silverman (2011). The Adequacy of Informed Consent Forms in Genetic Research in Oman: A Pilot Study. Developing World Bioethics 11 (2):57-62.
Lauren C. Milner & David Magnus (2013). Can Informed Consent Go Too Far? Balancing Consent and Public Benefit in Research. American Journal of Bioethics 13 (4):1 - 2.
Karen J. Maschke (2010). Wanted: Human Biospecimens. Hastings Center Report 40 (5):21-23.
Added to index2011-01-29
Total downloads60 ( #74,832 of 1,934,369 )
Recent downloads (6 months)44 ( #12,541 of 1,934,369 )
How can I increase my downloads?