Research participants’ perceptions and views on consent for biobank research: a review of empirical data and ethical analysis

BMC Medical Ethics 16 (1):60 (2015)
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Appropriate information and consent has been one of the most intensely discussed topics within the context of biobank research. In parallel to the normative debate, many socio-empirical studies have been conducted to gather experiences, preferences and views of patients, healthy research participants and further stakeholders. However, there is scarcity of literature which connects the normative debate about justifications for different consent models with findings gained in empirical research. In this paper we discuss findings of a limited review of socio-empirical research on patients’ and healthy research participants’ experiences and views regarding consent to biobank research in light of ethical principles for appropriate information and consent

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Author's Profile

Flavio D'Abramo
Freie Universität Berlin

References found in this work

The birth of bioethics.Albert R. Jonsen - 1998 - New York: Oxford University Press.
The Birth of Bioethics.Jonathan D. Moreno & Albert R. Jonsen - 1999 - Hastings Center Report 29 (4):42.
Informed Consent: Its History, Meaning, and Present Challenges.Tom L. Beauchamp - 2011 - Cambridge Quarterly of Healthcare Ethics 20 (4):515-523.
Can Broad Consent be Informed Consent?M. Sheehan - 2011 - Public Health Ethics 4 (3):226-235.
Broadening consent--and diluting ethics?B. Hofmann - 2009 - Journal of Medical Ethics 35 (2):125-129.

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