Public preferences towards data management and governance in Swiss biobanks: results from a nationwide survey

Abstract

ObjectivesThis article aims to measure the willingness of the Swiss public to participate in personalised health research, and their preferences regarding data management and governance.SettingResults are presented from a nationwide survey of members of the Swiss public.Participants15 106 randomly selected Swiss residents received the survey in September 2019. The response rate was 34.1% (n=5156). Respondent age ranged from 18 to 79 years, with fairly uniform spread across sex and age categories between 25 and 64 years.Primary and secondary outcome measuresWillingness to participate in personalised health research and opinions regarding data management and governance.ResultsMost respondents preferred to be contacted and reconsented for each new project using their data (39%, 95% CI: 37.4% to 40.7%), or stated that their preference depends on the project type (29.4%, 95% CI: 27.9% to 31%). Additionally, a majority (52%, 95% CI: 50.3% to 53.8%) preferred their data or samples be stored anonymously or in coded form (43.4%, 95% CI: 41.7% to 45.1%). Of those who preferred that their data be anonymised, most also indicated a wish to be recontacted for each new project (36.8%, 95% CI: 34.5% to 39.2%); however, these preferences are in conflict. Most respondents desired to personally own their data. Finally, most Swiss respondents trust their doctors, along with researchers at universities, to protect their data.ConclusionInsight into public preference can enable Swiss biobanks and research institutions to create management and governance strategies that match the expectations and preferences of potential participants. Models allowing participants to choose how to interact with the process, while more complex, may increase individual willingness to provide data to biobanks.

What are the bottlenecks to health data sharing in Switzerland? An interview study

“…These bottlenecks can occur due to the views of potential participants or expert stakeholders, who might be researchers, lawyers, or institutions. While recently published studies have described the general public's views on data sharing in Switzerland [4][5][6], only limited data (collected in 2018) exists from the expert stakeholders [7,8]. This study aimed to better understand the potential bottlenecks to health data sharing in Switzerland by interviewing relevant expert stakeholders at the various Swiss university hospitals and other organisations where health details are shared and used for research.…”

Talking Ethics Early in Health Data Public Private Partnerships

“…In the context of PPPs, Ballantyne and Stewart ( 2019 , p. 308) observe that “social license granted for data use in the public sector will not automatically extend to data sharing with the private sector.” Indeed, data donors’ willingness to share data with private organizations has declined since 2016 to a level significantly lower than for public institutions (Ghafur et al, 2020 ). In Switzerland, for example, pharmaceutical and health insurance companies have been found to be the institutions least trusted by the general public to use anonymized health data (Brall et al, 2022 ; Pletscher et al, 2022 ). Social license, or lack thereof, thus makes data sharing in public private partnerships challenging.…”

Willingness to participate in a personalized health cohort – Insights from the Swiss Health Study pilot phase

“…Yet, participation rates in population-based cohorts or surveys in Switzerland have substantially dropped in the past 30 years. A recently published population-based survey in Switzerland highlighted public preferences towards data management and governance in Swiss biobanks (22,23). A large proportion of respondents (49%) prefer to reconsider each new project, 29% stated that their preference strongly depend on the type of project and most respondents wish to personally own their data (23).…”

“…A recently published population-based survey in Switzerland highlighted public preferences towards data management and governance in Swiss biobanks (22,23). A large proportion of respondents (49%) prefer to reconsider each new project, 29% stated that their preference strongly depend on the type of project and most respondents wish to personally own their data (23). Of the 52% of respondents who would prefer their data to be stored anonymously, many also indicated a preference to be recontacted for each new project (36.8%) or to be recontacted depending on the new project type (26.5%) -and hence give contradictory statements (23).…”

“…Altruistic motivations and the importance of contributing to a greater good have also been shown to predominate in a survey re ecting the answers of 124 Swiss residents (25) and semi-structured interviews with 40 older Swiss adults (67 to 92 years) (26). This emerging body of literature also indicates the presence of concerns over data privacy and re-use (23) and distrust of private companies' possible use of data (26). Moreover, the lack of opportunities to be enrolled in health research has been identi ed as the main obstacle to participate (25).…”