Questioning the rhetoric of a ‘willing population’ in Finnish biobanking

Abstract

According to surveys and opinion polls, citizens in Nordic welfare societies have positive, supportive attitudes towards medical research and biobanking. In Finland, it was expected that this would result in the active biobank participation of patients and citizens. Indeed, public support has been rhetorically utilised as a unique societal factor and advantage in the promotion of Finnish biobanks, underlining the potential Finland offers for the international biomedical enterprise. In this paper, we critically analyse the use of notions such as ‘willing population’ and ‘engaged people’ in the promotion and legitimation of biobanking. First, there is a seeming contradiction between positive attitudes and actual participation rates, as biobanks have faced unexpected challenges in participant recruitment during the first years of their operations. As a result, the concept of a willing population was redirected to problematise the necessity of informed consent. Second, we question whether it is even meaningful to assume the existence of an informed and engaged population with regard to biobanking. Therefore, we suggest that it is problematic to talk about a willing population at the same time as the relevance of the informed consent system is being questioned by biobank actors and policy makers. We analyse this tension in relation to existing data on Finnish people’s attitudes, pointing out that positive, supportive views do not directly transform into high participation rates; nor do they justify the claims of policy makers and biobank proponents that people are willing to participate, when in fact surveys report that people know very little about biobanks.

Public awareness of and attitudes towards research biobanks in Latvia

“…The relationship between high levels of awareness, positive attitudes and real participation rates in biobanks is not direct. As emphasised by Snell and Tarkkala in their analysis of the rhetoric of a 'willing population' in Finnish biobanking: "supporting and positive attitudes or high levels of general trust in a given society are not in themselves straightforward indications of people's actual willingness and preparedness to participate in biobanking" [13]. Such criticisms highlight the need to seek new ways of promoting the values of transparency, participation, inclusion and accountability and of overcoming the risk of instrumentalisation of donors by looking at potential donors as just a resource providing samples and personal data to a biobank or passive objects of research requiring protection.…”

The Nordic data imaginary

“…In comparing and contrasting Denmark and Finland, we suggest that despite similar historical backgrounds and legal frameworks, these countries employ somewhat different approaches in envisioning and implementing their data economies. For example, the role and opinion of public debate in the two countries has been significantly different, where Finland has shown less interest in accounting for public concerns or even fostering a debate surrounding such visions (Snell and Tarkkala, 2019).…”

Legacy samples in Finnish biobanks: social and legal issues related to the transfer of old sample collections into biobanks

“…In a similar line with regard to biomedical research, the Protocol on Biomedical research to the Oviedo Convention requires for a consent to be regarded as valid when the donor has been informed of all his or her rights relating to the research and of the safeguards offered by the law 15. When the transfer has been carried out without explicit consent and with the notification only, it has been questioned whether the donor can be considered informed (Snell and Tarkkala 2019; cf. Caulfield and Murdoch 2017).…”

“…This legislation was expected to enable biomedical research and development through new prospective samples collected with consent. Finnish biobank legislation (Biobank Act 688/2012) entered into force in September 2013 and was celebrated as the first comprehensive modern biobank law to enable recontacting of donors and enhance the autonomy and privacy of individuals (Soini 2013; Tupasela 2015; MSAH 2016; Snell and Tarkkala 2019). Today, ten biobanks in Finland have been founded to meet the requirements of the law.…”

“…In this article, we demonstrate how in the Finnish biobanks, practical operations with regard to legacy samples, and in extensio, for the overall majority of samples, the autonomy is reduced to the possibility of opt-out in case the donor happens to see the notice of the transfer published in the newspaper. It is likely that the donor does not have knowledge regarding the changed purpose of the diagnostic samples collected within health care (Snell and Tarkkala 2019).…”