Graduate studies at Western
Bioethics 25 (3):155-166 (2011)
|Abstract||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)|
|Through your library||Configure|
Similar books and articles
Oonagh Corrigan (ed.) (2009). The Limits of Consent: A Socio-Ethical Approach to Human Subject Research in Medicine. Oxford University Press.
M. Sheehan (2011). Can Broad Consent Be Informed Consent? Public Health Ethics 4 (3):226-235.
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.
Michelle H. Biros (2007). Research Without Consent: Exception From and Waiver of Informed Consent in Resuscitation Research. Science and Engineering Ethics 13 (3):361-369.
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.
Janet L. Brody, John P. Cluck & Alfredo S. Aragon (1997). Participants' Understanding of the Process of Psychological Research: Informed Consent. Ethics and Behavior 7 (4):285 – 298.
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.
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.
K. S. Steinsbekk & B. Solberg (2011). Biobanks--When is Re-Consent Necessary? Public Health Ethics 4 (3):236-250.
Added to index2009-07-30
Total downloads30 ( #46,393 of 732,743 )
Recent downloads (6 months)1 ( #61,087 of 732,743 )
How can I increase my downloads?