Trust, Distrust and Co-production: The Relationship Between Research Biobanks and Donors

Abstract

This chapter addresses one so-called ethical aspect of biobanking, namely the relationship between biobanks for research and donors of human biological samples and personal health information. Central to bioethical theory and practice is the institution of informed consent and its potential to create trust. We present results from an observational study of the consent process during the recruitment to a local population DNA bank in Southern France as well as subsequent interviews with donors. Three types of donors were identified: (1) Persons holding a "natural trust" and who were quite uninterested in the information and consent procedure; (2) persons who expressed distrust, but nevertheless participated as donors; and (3) persons who appreciated the consent procedure as a sign of a well-organised institution. While informed consent may appear partly irrelevant to the issue of trust for a large group of donors, we proceed to discuss the status and desirability of a strong focus on donors' trust in biobank experts. Indeed, more symmetry and distrust may be a creative potential in the co-production of science and society in the biobank era.

Participants’ Accounts on Their Decision to Join a Cohort Study With an Attached Biobank

“…Because of the fact that participants often acknowledged that they did not scrutinize the information of the study, it is quite likely that the balance was performed on the basis of personal beliefs about benefits and risks rather than on the objective facts described in the brochures. This observation supports previous works that have highlighted the lack of interest in the information provided about studies (Ducournau & Strand, 2010;Hoeyer, 2003;Verheggen, Jonkers, & Kok, 1996).…”

Why do participants enroll in population biobank studies? A systematic literature review

“…The occurrences of trust need as well to be somewhat contextualized as trust was sometimes expressed as being 'imposed' by the situation and the setting. This affirmation confirms the results of a previous study, which showed that information and consent procedure actually contribute to the establishment of an asymmetrical relation where the donor is relegated to the role of the 'unknowledgeable and disempowered' [49]. Trust probably also explains why participants considered the risks involved in the study as low or nonexistent, especially under the auspice of a well-known institution.…”

Credibility and use of scientific and technical information in policy making: An analysis of the information bases of the National Research Council’s committee reports

“…Additionally, criticisms are raised against policymakers for acting too cautiously, or for not acting at all, to calm public fears and concerns (Barry, 2012;Blühdorn, 2013). The result is that the public can lose "faith in the ability of science to solve its problems and loses trust in its political leaders to act in its (the public's) interest" (Irwin & Wynne 1996) leading to a variety of negative consequences for the functioning of science in society (Ducournau and Strand, 2009;Jasanoff, 2014;Morris-Suzuki, 2014).…”