Abstract
Finnish biobanks have started to recruit children. The national supervising authority has emphasized the centrality of providing children with age-appropriate information. We analyzed one such campaign. We argue that by simplifying the complex socio-technical arrangements of biobanking with the introduction of a new metaphor-like concept, “Bio-me,” the campaign presents a misleading and reductionist picture of data-driven biomedicine and biobank participation. First, the Bio-me character seems to bear similarities to the seventeenth-century explanations of embryological development. Second, the focus in the campaign is on biological material while crucial connections to different sorts of data are ignored. Third, we point to the absence of verbal references to genes and DNA, although the prevailing visualization comprises the double helix. We argue that the campaign has potential to contribute to public misunderstanding of science by introducing a new term that has little connection to actual biology or scientific practices it tries to promote.
Highlights
IntroductionFinnish biobanking and a campaign for recruiting childrenBiobanks are research infrastructures where biological material from humans (such as blood, tissue, and saliva) and related data (such as laboratory results and diagnostic information) are stored for future research purposes
Finnish biobanking and a campaign for recruiting childrenBiobanks are research infrastructures where biological material from humans and related data are stored for future research purposes
The methodological approach represents a content analysis that combines textual and visual analysis (Harrison, 2002; Yu, 2017). We focused both on the narrated and the written text as well as the visualizations in the material and asked: What is this and what does it represent and claim? How does the text, visualizations, and the metaphors in them correspond to contemporary biobanking practices? we identified more explicit links with the external surroundings, culture, and knowledge that go beyond the superficial information provided by the text or image itself (Greenwood et al, 2018) and analyzed what is left out of discussion as a result of the chosen narratives, visualizations, and metaphors
Summary
Finnish biobanking and a campaign for recruiting childrenBiobanks are research infrastructures where biological material from humans (such as blood, tissue, and saliva) and related data (such as laboratory results and diagnostic information) are stored for future research purposes. Finnish biobanking and a campaign for recruiting children. Districts, the biobank of the National Institute of Health and Welfare, the biobank of the Finnish Blood Service, one disease-specific biobank, one governed by the University of Oulu, and one operated by a private healthcare company. The target was the adult population, but in 2016, some biobanks started to collect samples from children. The recruitment of children started at the Helsinki Biobank and other clinical biobanks have since followed. Despite active international discussion about concerns related to children as biobank donors, and whether they should be recontacted once they are adults Giesbertz et al, 2016; Gurwitz et al, 2009; Hens et al, 2011), there has been very little public discussion in Finland about the ethical implications of collecting children’s samples in biobanks Despite active international discussion about concerns related to children as biobank donors, and whether they should be recontacted once they are adults (e.g. Giesbertz et al, 2016; Gurwitz et al, 2009; Hens et al, 2011), there has been very little public discussion in Finland about the ethical implications of collecting children’s samples in biobanks
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