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Between data providers and concerned citizens: Exploring participation in precision public health in Switzerland
Nolwenn Bühler1, Annika Frahsa2, Réjane Morand Bourqui
1University of Lausanne, Switzerland.
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.
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