David Bourget (Western Ontario)
David Chalmers (ANU, NYU)
Rafael De Clercq
Jack Alan Reynolds
Learn more about PhilPapers
Public Health Ethics 4 (3):236-250 (2011)
The unknown nature of tomorrow’s research makes informed consent in biobank research a challenge. Whether the consent given by biobank participants is ‘broad’ or ‘narrow’, the ever present question remains the same: are new activities covered by the original consent? In this article, we focus on the meaning of, and the relation between, broad consent and re-consent in biobank research. We argue that broad consent should be understood as consenting to a framework—a framework which covers aims, core conditions for acceptable use, governance and how these affect participants. Changes that alter the framework in a fundamental way call for re-consent. Three biobank cases of current international interest are used to debate when re-consent is an ethical necessity: whole-genome sequencing, data sharing and commercial utilization. These reflections give us a more nuanced view on what consent is for. We claim that the introduction of broad consents in biobank research has not represented a betrayal of individual participant interests, as some critics have asserted. Broad consents combined with the possible use of re-consent are in certain settings not inferior, but rather ethically superior to narrow consents. In population-based research biobanks, they allow for a reconciliation between individual interest and public matters in society at large
|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
Angus Dawson (2010). The Future of Bioethics: Three Dogmas and a Cup of Hemlock. Bioethics 24 (5):218-225.
B. Hofmann (2009). Broadening Consent--And Diluting Ethics? Journal of Medical Ethics 35 (2):125-129.
Péter Kakuk (2008). Gene Concepts and Genethics: Beyond Exceptionalism. Science and Engineering Ethics 14 (3):357-375.
Jan Reinert Karlsen, Jan Helge Solbakk & Søren Holm (2011). Ethical Endgames: Broad Consent for Narrow Interests; Open Consent for Closed Minds. Cambridge Quarterly of Healthcare Ethics 20 (04):572-583.
B. M. Knoppers, J. R. Harris, P. R. Burton, M. Murtagh, D. Cox, M. Deschenes, I. Fortier, T. J. Hudson, J. Kaye & K. Lindpaintner (2011). From Genomic Databases to Translation: A Call to Action. Journal of Medical Ethics 37 (8):515-516.
Citations of this work BETA
No citations found.
Similar books and articles
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.
M. Sheehan (2011). Can Broad Consent Be Informed Consent? Public Health Ethics 4 (3):226-235.
A. T. Nuyen (2007). Knowing the Unknown and Informed Consent. International Journal of Applied Philosophy 21 (2):213-223.
Deborah Bowman (2011). Informed Consent: A Primer for Clinical Practice. Cambridge University Press.
Oonagh Corrigan (ed.) (2009). The Limits of Consent: A Socio-Ethical Approach to Human Subject Research in Medicine. Oxford University Press.
Shaun D. Pattinson (2009). Consent and Informational Responsibility. Journal of Medical Ethics 35 (3):176-179.
James R. P. Ogloff & Randy K. Otto (1991). Are Research Participants Truly Informed? Readability of Informed Consent Forms Used in Research. Ethics and Behavior 1 (4):239 – 252.
Giovanni Boniolo, Pier Paolo di Fiore & Salvatore Pece (2012). Trusted Consent and Research Biobanks: Towards a 'New Alliance' Between Researchers and Donors. Bioethics 26 (2):93-100.
Eric R. Pedersen, Clayton Neighbors, Judy Tidwell & Ty W. Lostutter (2011). Do Undergraduate Student Research Participants Read Psychological Research Consent Forms? Examining Memory Effects, Condition Effects, and Individual Differences. Ethics and Behavior 21 (4):332 - 350.
Piotr S. Iwanowski (2007). Informed Consent Procedure for Clinical Trials in Emergency Settings: The Polish Perspective. Science and Engineering Ethics 13 (3):333-336.
Antonio Casado Rochdaa & José Antonio Seoane (2008). Alternative Consent Models for Biobanks: The New Spanish Law on Biomedical Research. Bioethics 22 (8):440-447.
Sonja Grover (2003). On the Limits of Parental Proxy Consent: Children's Right to Non-Participation in Non-Therapeutic Research. [REVIEW] Journal of Academic Ethics 1 (4):349-383.
Tom Walker (2013). Respecting Autonomy Without Disclosing Information. Bioethics 27 (7):388-394.
Added to index2011-11-04
Total downloads11 ( #146,511 of 1,139,999 )
Recent downloads (6 months)1 ( #157,514 of 1,139,999 )
How can I increase my downloads?