Department of Health Sciences and Technology, ETH Zurich, Zurich, Switzerland
Institute of Social and Preventive Medicine, University of Bern, Bern, Switzerland.
BMJ Open. 2022 Aug 26;12(8):e060844. doi: 10.1136/bmjopen-2022-060844.
This article aims to measure the willingness of the Swiss public to participate in personalised health research, and their preferences regarding data management and governance.
Results are presented from a nationwide survey of members of the Swiss public.
15 106 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.
Willingness to participate in personalised health research and opinions regarding data management and governance.
Most 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.
Insight 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.
本文旨在衡量瑞士公众参与个性化健康研究的意愿，以及他们对数据管理和治理的偏好。
研究结果来自于对瑞士公众的全国性调查。
2019 年 9 月，随机抽取了 15106 名瑞士居民参与调查。回复率为 34.1%（n=5156）。受访者年龄在 18 至 79 岁之间，25 至 64 岁之间的性别和年龄分布相当均匀。
参与个性化健康研究的意愿以及对数据管理和治理的看法。
大多数受访者更倾向于通过他们的数据联系并重新同意每个新项目（39%，95%置信区间：37.4%至 40.7%），或者表示他们的偏好取决于项目类型（29.4%，95%置信区间：27.9%至 31%）。此外，大多数人（52%，95%置信区间：50.3%至 53.8%）更喜欢将他们的数据或样本匿名存储或编码存储（43.4%，95%置信区间：41.7%至 45.1%）。在那些希望数据匿名化的人中，大多数人也表示希望为每个新项目重新联系（36.8%，95%置信区间：34.5%至 39.2%）；然而，这些偏好存在冲突。大多数受访者希望拥有自己的数据。最后，大多数瑞士受访者信任他们的医生以及大学的研究人员来保护他们的数据。
了解公众的偏好可以使瑞士生物库和研究机构制定符合潜在参与者期望和偏好的管理和治理策略。允许参与者选择如何与该过程互动的模型虽然更加复杂，但可能会增加个人向生物库提供数据的意愿。
