Questioning the rhetoric of a 'willing population' in Finnish biobanking

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Snell , K & Tarkkala , H 2019 , ' Questioning the rhetoric of a 'willing population' in Finnish biobanking ' , Life Sciences, Society and Policy , vol. 15 , no. 4 , 4 . https://doi.org/10.1186/s40504-019-0094-5

Title: Questioning the rhetoric of a 'willing population' in Finnish biobanking
Author: Snell, Karoliina; Tarkkala, Heta
Contributor organization: Helsinki Collegium for Advanced Studies
Sociology
Staff Services
Date: 2019-05-27
Language: eng
Number of pages: 11
Belongs to series: Life Sciences, Society and Policy
ISSN: 2195-7819
DOI: https://doi.org/10.1186/s40504-019-0094-5
URI: http://hdl.handle.net/10138/302481
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.
Subject: 5141 Sociology
Biobanks
Participation
Innovation policy
Finland
Informed consent
Public opinion
PARTICIPATE
PRIVACY
PUBLICS
Peer reviewed: Yes
Rights: cc_by
Usage restriction: openAccess
Self-archived version: publishedVersion


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