RECONSIDERING THE VALUE OF CONSENT IN BIOBANK RESEARCH
Article first published online: 29 JUL 2009
© 2009 Blackwell Publishing Ltd.
Volume 25, Issue 3, pages 155–166, March 2011
How to Cite
ALLEN, J. and MCNAMARA, B. (2011), RECONSIDERING THE VALUE OF CONSENT IN BIOBANK RESEARCH. Bioethics, 25: 155–166. doi: 10.1111/j.1467-8519.2009.01749.x
- Issue published online: 29 JUL 2009
- Article first published online: 29 JUL 2009
- participant view;
- moral act;
- relational autonomy
Biobanks for long-term research pose challenges to the legal and ethical validity of consent to participate. Different models of consent have been proposed to answer some of these challenges. This paper contributes to this discussion by considering the meaning and value of consent to participants in biobanks. Empirical data from a qualitative study is used to provide a participant view of the consent process and to demonstrate that, despite limited understanding of the research, consent provides the research participants with some level of control and a form of self determination that they value. Participation is framed as a moral act of a responsible citizen providing reinforcement of self identity. Consent symbolizes the trust invested in researchers and research institutions to use the biobank for the public good. The paper argues that consent continues to play an important role in biobank participation and that a participant view should inform proposals to modify consent processes.