Citizens' negotiations of information, value and reciprocity in the biobank context
Melanie Goisauf (University of Vienna)
Susanne Oechsner (University of Vienna)
Paper short abstract:
Based on empirical data gathered from public engagement events addressing biobanking in Austria, this paper elaborates how citizens assign value to biomaterials and data, and how they conceptualize the relationship between participants and biobanks in terms of reciprocity and care.
Paper long abstract:
Biobanks have become core infrastructures for providing access to human materials and health information for biomedical research. Processing these materials for research purposes is dependent on participants' agreement to donate and on the informed consent (IC) they are willing to give. Yet, making an informed decision about the use of samples/data is a particular challenge in the biobank context, fueling debates about ethically appropriate consent forms, control and ownership, data protection and privacy, as well as about how to improve the involvement of publics and patients in biobanking governance. In our paper, we analyze how citizens relate to biobank-based research and how they conceptualize this relationship in terms of responsibility and care, as well as regarding normative ideals of "gift-giving" for the common good. We draw on data from a public engagement format of the Austrian Biobank infrastructure, namely 15 "citizen-expert-panels" (CEPs), bringing together citizens, patient representatives and professionals from the field. In our analysis, we are going beyond the evaluation of CEPs' capability to engage publics, but will rather carve out how citizens (re)construct value of biomaterials and data within situated knowledge-building about "appropriate" biomedical research. This happens within an imagination of reciprocity that requires mutual engagement instead of unidirectional information, which is codified in the IC. By illustrating how biobanks are situated in a wider context of biomedical and societal developments, we conclude with discussing how this could inform a more value-oriented policy-making. This research has been carried out in the framework of BBMRI.at (funding: BMWFW).
- Confluence, collaboration and intersection