Europe Biobank Week 2016
Highlights in Public Engagement Sessions
The EBW program put a strong focus on the issue of public and participant engagement. "Today, participation is a key process and requirement in collaborative biobanking," said Sara Casati (Italy). According to her, precision medicine and big data are features of post-normal science (a notion coined by Funtowicz and Ravetz in the early 1990s) and of a paradigm of complexity characterized by pluralistic processes and by co-production of scientific knowledge. Participation, therefore, needs to be built in as part of an infrastructure.
Trust is key. Marianne Talbot (UK), a bioethicist and participant in the UK biobank, posed the question of what the reasons for a potential loss of trust in the UK biobank might be. She mentioned three main possibilities: a breach of confidentiality, misuse of data, and if the initial consent were interpreted too generously, in which case one would "rather go back to the participants and get new consent," Talbot said. "Nothing about us, without us" – this is what early patient activists in health research demanded. Francesco de Lorenzo (Italy), Board Member of the European Cancer Patient Coalition (ECPC), sees the partnership between biobanks and patients as mutually beneficial. "Reciprocity is key to ensure that the relationship between the biobank and the patients remains strong," he said.
Engagement might be supported by technical platforms, as demonstrated by Madeleine Murtagh and Joel Minion (UK), who presented their ECOUTER project, a virtual engagement project on the topic of trust and data linkage in biobanking. By using online forums, stakeholders are invited to interact with the existing evidence on a topic of shared concern and to respond and contribute additional ideas and links. The online discussion is analyzed to generate a conceptual framework of the phenomenon or issue considered. Thus, they gain a breadth of perspectives instead of the views of only a handful of representatives.
On behalf of GBN, Antje Schütt (TMF) presented the results of the WP4 survey on study participants' attitudes toward and understanding of biobanks and how these results feed into the development of a communication and engagement strategy for GBN and for biobanks throughout Germany.