There is lots of interesting research looking specifically at questions regarding the consent process, which might be useful (e.g. Sanderson, Brothers, Mercaldo et al. 2017; Tomlinson, De Vries, Kim et al. 2018; Petersen, Desmendt, Harris et al.2014). Asked about consent in my study context, the focus group discussion participants were clear about the need for opt-in consent, which they described not only as a moment of informing them about biobank but respecting their agency as voluntary partners in a shared, possibly risky social experiment aiming for new health care solutions. Instead of bringing up a need for individual consents by research case, the donors tended to express trusting the Blood Service and scientific research community to have the professional capacity to work out the best ways to deliver this mutual aim. However, donors did discuss expecting reciprocity in the form of useful and interesting information about biobank research using their donations and in making sure donors’ interest and moral views were democratically represented in the biobank decision-making.  

It is hard to answer, since how severely somethings tests donors trust depends on the occasion, context and cause of disappointment. For example, many of blood donors in my study had a relaxed attitude on public-private research partnerships, but said they did not want to see their voluntary contributions mostly to profit the wealthy few or to be used as means for discrimination; hence, media reports suggesting a serious breach of this contract could be a reason for them to protest. To find what might trigger such recession of trust, blood agencies could study the “building blocks” of the trust relationship with their local donor community and to openly discuss with their donors about the principles perceived to underlie also the research collaboration. This way blood agencies could look at how these principles interacts with and translates into its new role in research and biobanking and identify some potential conflicts. According to Sheikh, Deleuran and Hoeyer (2016) openness makes the best trust building policy when dealing with complex moral issues related with the commercial aspects in the use of donated blood.

In my opinion, such follow-up about the everyday practice of these new donor relations would be very useful. Since 2017 the Blood Service Biobank has successfully reached its donor consent targets, and has in that sense, become an established part of voluntary blood donation. However, as far as I know, there is no research plan for learning what this actually means to the donors and have their expectations somehow changed as some of the hypotheticals have become realized. I believe that the Finnish experiment would still have much learning to offer both academically and strategically also for other blood organisations.

My excellent colleagues at the Blood Service Biobank would be able to give you the right numbers of consents given, but unfortunately, I am a bit out of date when it comes to the current rates. So, I would encourage you to contact biopankki(at)veripalvelu.fi, if you are interested in learning more.  While my qualitative data does not lend itself for any meaningful statistical inferences, I would guess that the real-life participation rate to remain somewhat lower than the numbers on the presentation slide, one reason being that the study participants represented a selection of donors who were prepared to give their time to research.

I did also ask study participants about their views on what they expected from the biobank participation. I would say that your framing of the question summarises these discussions very well as some indeed emphasised more the public interest and some personal interest when it came to research results. Not knowing yet what kind of results this biobank participation might provide them with, donors often find this question hard to answer. There seemed to be general understanding that it should be “useful” not “useless” or “harmful” information in social or in personal terms. It was generally expected, however, that the Blood Service experts would immediately inform donors of any findings relevant to their health, as they would do with blood test results.

First, I think there should be ongoing public discussion on what the costs/benefits of biobanks look like for different people as we all learn more about their function and outputs. At least in Finland, biobanks are in large part public investments to which voluntary donors contribute with their personal data. So far, public discussion has emphasised the expert view on potential medical and economic benefits and less discussion has been about biobank donor experiences on benefits or the (opportunity) costs of these public/personal investments (see e.g. Tarkkala, Helén & Snell 2019). Perhaps the blood service biobanks could be more actively engaged with this discussion on the public arenas and bring forward concrete examples of costs and benefits?

I also think it is very relevant to demarcate the two donations taking place in the same social context, and keep reminding blood donors who have given their consent that they are now also biobank data donors. Retaining a consciousness of biobank participation also helps avoiding the risk of feeling exploited if blood donors are suddenly reminded of this fact in a negative context, as (see also Sheikh, Deleuran and Hoeyer 2016). Blood service openly sharing with the blood donors what it has leaned about the costs and benefits of its biobank services to donors/patients/citizens, is part of the bigger process to familiarize donors with what it means to be a donor of biobank data as they are only creating opinions about biobanking. In his study, Cohn (2016) also made a case that the lack of concrete evidence of shared benefits and uncertainty of allocation of costs is the reason why some refuse to donate for unspecified research. How should this information be communicated and processed; and how to create space for a dialogue on aspects that might raise criticism? These are questions beyond my expertise but the kinds of practical problems experts at blood services around the world successfully work with every day.