Background 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. Methods Review question: Which empirical data are
available on research participants’ perceptions and views regarding
information and elicitation of consent for biobank research? Search of
articles published till March 1st 2014 in Pubmed. Review of abstracts and
potentially relevant full text articles by two authors independently. As
categories for content analysis we defined (i) understanding or recall of
information, (ii) preferences regarding information or consent, and (iii)
research participants’ concerns. Results The search in Pubmed yielded 337
abstracts of which 10 articles were included in this study. Approaches to
information and consent varied considerably across the selected studies. The
majority of research participants opted for some version of limited consent
when being informed about such possibility. Among the factors influencing the
type of preferred consent were information about sponsoring of biobank
research by pharmaceutical industry and participants’ trade-off between
privacy and perceived utility. Studies investigating research participants’
understanding and recall regarding the consent procedure indicated
considerable lack of both aspects. Research participants’ perceptions of
benefits and harms differ across those studies. Conclusion The knowledge,
perceptions and views of research participants who have undergone a consent
procedure within the context of biobank research raise several questions on
the issue of how to inform and elicit consent in an ethically acceptable way.
In our empirical-ethical analysis we develop suggestions on how the practice
of eliciting consent in the biobank context should be improved