Between data providers and concerned citizens: Exploring participation in precision public health in Switzerland.

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State: Public
Version: Final published version
License: CC BY-NC 4.0
Serval ID
serval:BIB_85E605051C75
Type
Article: article from journal or magazin.
Collection
Publications
Institution
Title
Between data providers and concerned citizens: Exploring participation in precision public health in Switzerland.
Journal
Public understanding of science
Author(s)
Bühler N., Frahsa A., Morand Bourqui R., Von Götz N., Bochud M., Panese F.
ISSN
1361-6609 (Electronic)
ISSN-L
0963-6625
Publication state
Published
Issued date
01/2024
Peer-reviewed
Oui
Volume
33
Number
1
Pages
105-120
Language
english
Notes
Publication types: Journal Article
Publication Status: ppublish
Abstract
This empirical article explores the dynamics of exchange and reciprocity between cohorters, that is, study organizers, and cohortees, that is, study participants. Drawing on literature on bioeconomy and valuation, we analyze cohortees' expectations in return for the "clinical labor" they perform in the pilot phase of a Swiss precision public health study. Based on an ethnography of this cohort and data from seven focus groups with cohortees (n = 37), we identified four positions: (1) the good citizen participant, (2) the critical participant, (3) the concerned participant, and (4) the self-oriented participant. These reveal that cohortees' participation, still framed in altruistic terms, nevertheless engages expectations about reciprocal obligations of the state and science in terms of public health, confirming the deep entanglement of gift-based, financial, and moral economies of participation. The different values emerging from these expectations-robust scientific evidence about environmental exposure and a socially oriented public health-provide rich indications about stake making which might matter for the future of precision public health.
Keywords
Humans, Switzerland, Public Health, Community Participation, clinical labor, cohort, expectations, precision health, public participation, reciprocity, values
Pubmed
Web of science
Open Access
Yes
Funding(s)
Swiss National Science Foundation / CRSII5_180350
Create date
20/07/2023 14:09
Last modification date
11/01/2024 8:14
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