Abstract
Modern biomedical and genetic studies require large study cohorts; blood donors have been suggested to represent an appropriate group for recruiting healthy cohorts. The Blood Service Biobank (BSB) in Finland was recently established to recruit blood donors willing to give broad biobank consent. The aim of the present study is to understand how the blood bank context influences views on donating samples and health data. We organised 61 interviews and 10 group discussions with current and potential blood donors. Using qualitative content analysis, we identified three discussion frameworks that summarise the results. We found that frequent blood donors associated the voluntary act of donation with caring for patients. The blood donation experience was considered to accommodate biobank participation, but also allowed critical observations on the integration of research data collection into blood donation. Research participants identified an important difference between the blood bank and biobank contexts. In the biobank context, the focus shifts from donating blood to patients into donating personal and genetic data for research use. Blood donors’ anxiety over data use was balanced with their experience of the trustworthiness of the Blood Service. These experiences indicated that the new biobanking activity could be trusted to a familiar organisation. To build donors’ trust, biobanks should invest in their institutional reputation, donor experience and dialogue with donors. These findings can be applied to other institutions that are considering setting up biobanks with broad consent for personal data use.
Highlights
Modern biomedical and genetic studies require large study cohorts that may be collected in biobanks with broad consent for sample and data use
The organisation of the focus groups was based on the following objectives: groups that represent different stages of experience on blood donation with focus on younger age groups and on blood donors who already had participated in a genetic study through the Blood Service (GeneRISK)
We enquired how participants felt about the plan to set up the Blood Service Biobank (BSB) and if they, as blood donors, would be willing to join the BSB by giving a blood sample for this purpose
Summary
Modern biomedical and genetic studies require large study cohorts that may be collected in biobanks with broad consent for sample and data use. Finland 3 Department of Social Sciences, University of Eastern Finland, Helsinki, Finland epidemiological cohorts aim to collect representative samples of the entire population. It has been suggested, and there are good examples to support this, that blood donors would constitute a good cohort representing healthy populations [1]. A blood donor biobank offers access to a longitudinal collection of samples in addition to genetic and health data [2]. Some blood donor biobanks have been very successful in recruiting blood donors [2, 5]
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