Accepted Paper:

Negotiating uniqueness of national population in biobanking and data driven medicine  

Author:

Heta Tarkkala (University of Helsinki)

Paper short abstract:

The relationship between biobanks as bioinformation depositories and narratives that are used to make sense of biobank activities is problematic in Finland. The new ways of organizing medical research challenge the usefulness of the well known narrative of population’s unique genomic heritage

Paper long abstract:

One of the great medical narratives in Finland tells a story about isolated, unique gene-pool of the Finns and its importance to the success of Finnish biomedical research. This genetic heritage has been seen as a special ingredient contributing to the successes and break-throughs in science (i.e. discovering the "Finnish disease heritage"). Today this narrative figures in the rhetorics of biobank actors in Finland, such as people working for biobanks or innovation funds, who seek to legitimize their efforts and convince the possible partners and the public about the usefulness and value of Finnish sample collections for biomedical research.

In the presentation I will discuss how the narrative of unique genome becomes vague when biobank actors situate the value, usability and characteristics of the samples in their collections to the wider field of biomedical research. I suggest that emerging big-data environment of P4-medicine, as well as narrowly defined and very specialized research populations, challenge the strategies the biobank actors and stakeholders promoting biobanks use in their rhetorics. Their narratives underline national strengths of Finland to promote the usage of bioinformation from Finnish clinical biobanks.

I will ask how national uniqueness matters in the digitalized environment where bioinformation might be pooled from various sites together to form the "research population". Thus the presentation contributes to the STS discussions on research populations and data. The presentation is based on various kinds of data; published materials, fieldnotes from the participant observation as well as interviews.

Panel T021
Bioinformation management in data driven medicine