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

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.

Towards a Swiss health study with human biomonitoring: Learnings from the pilot phase about participation and design.

BACKGROUND: A large-scale national cohort aiming at investigating the health status and determinants in the general population is essential for high-quality public health research and regulatory decision-making. We present the protocol and first results of the pilot phase to a Swiss national cohort aiming at establishing the study procedures, evaluating feasibility, and assessing participation and willingness to participate. METHODS: The pilot phase 2020/21 included 3 components recruited via different channels: a population-based cross-sectional study targeting the adult population (20-69 years) of the Vaud and Bern cantons via personal invitation, a sub-study on selenium in a convenience sample of vegans and vegetarians via non-personal invitation in vegan/vegetarian networks, and a self-selected sample via news promotion (restricted protocol). Along with a participatory approach and participation, we tested the study procedures including online questionnaires, onsite health examination, food intake, physical activity assessments and biosample collection following high-quality standards. RESULTS: The population-based study and the selenium sub-study had 638 (participation rate: 14%) and 109 participants, respectively, both with an over-representation of women. Of altogether 1349 recruited participants over 90% expressed interest in participating to a national health study, over 75% to contribute to medicine progress and help improving others' health, whereas about one third expressed concerns over data protection and data misuse. CONCLUSIONS: Publicly accessible high-quality public health data and human biomonitoring samples were collected. There is high interest of the general population in taking part in a national cohort on health. Challenges reside in achieving a higher participation rate and external validity. For project management clear governance is key.