Evidence map›Paper›PMID 31131432›Full record

ArticleLife sciences, society and policy2019

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

Karoliina Snell, Heta Tarkkala

Open access · hybridAbstract read
In one paragraph

Article in Life sciences, society and policy, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 8 papers.

0numbers the graph read from it
0cells of the map it votes in
8citing papers in PubMed
5.1field-weighted citation impact, top 5% of its field
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

8 citing papers in PubMed, 37 citations in OpenAlex.

  1. Article
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  6. "Here comes Bio-me": An analysis of a biobank campaign targeted at children.Public understanding of science (Bristol, England) · 2021
    Article
  7. Article
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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

2 authors at 1 institution in 1 country.

Karoliina SnellHelsinki Collegium for Advanced Studies, University of Helsinki, Po Box 4, 00014, Helsinki, Finland. karoliina.snell@helsinki.fi.ORCID http://orcid.org/0000-0002-2643-6676
Heta TarkkalaFaculty of Social Sciences, University of Helsinki, Po Box 18, 00014, Helsinki, Finland.
University of Helsinki · FI

Funding

Academy of Finland 292408 and 292456Tekes 3986/31/2013
6 · The paper itself

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.

Indexed as

Biological Specimen BanksHealth Knowledge, Attitudes, PracticeFinlandHumansBiobanksFinlandInformed consentInnovation policyParticipationPublic opinion

Identifiers

PMID31131432
PMCPMC6535850
OpenAlexW2947572397

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.