Bioethics 25 (3):155-166 (2011)
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
|Keywords||trust relational autonomy moral act biobanks participant view consent|
|Categories||categorize this paper)|
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Citations of this work BETA
The Ethics of Biobanking: Key Issues and Controversies. [REVIEW]Heather Widdows & Sean Cordell - 2011 - Health Care Analysis 19 (3):207-219.
Biobanking Research on Oncological Residual Material: A Framework Between the Rights of the Individual and the Interest of Society. [REVIEW]Luciana Caenazzo, Pamela Tozzo & Renzo Pegoraro - 2013 - BMC Medical Ethics 14 (1):17.
Biobanking and the Abandonment of Informed Consent: An Ethical Imperative.Stephanie Solomon Cargill - 2016 - Public Health Ethics 9 (3):255-263.
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