Abstract
Express informed consent has become a standard requirement in research related to human beings, so also in biobank research. However, it has been argued extensively that this approach is inappropriate for biobank research and that it seriously hampers beneficial research. This chapter analyses biobank research to see whether it has particular features that require exceptional regulation. The conclusion drawn is that biobank exceptionalism is not defensible. Nevertheless, it is acknowledged that certain types of biobank research challenge so many of the traditional approaches in research ethics that alternative approaches need to be pursued. Four alternatives to informed consent are explored: broad consent, the confidentiality/privacy approach, submission to the researcher, and conditioned authorization. Pros and cons related to all of them indicate that a contextual approach has to be taken; one size does not fit all. The question in biobank research is not “to consent or not to consent”, but how to protect and promote the interests of individuals contributing to research at the same time as benefiting society and future patients.
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Hofmann, B., Solbakk, J.H., Holm, S. (2009). Consent to Biobank Research: One Size Fits All?. In: Solbakk, J., Holm, S., Hofmann, B. (eds) The Ethics of Research Biobanking. Springer, Boston, MA. https://doi.org/10.1007/978-0-387-93872-1_1
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DOI: https://doi.org/10.1007/978-0-387-93872-1_1
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