背景:本文通过评估潜在参与者的需求,探讨了在瑞士建立大规模基于人群的队列和生物样本库的可行性,期望,以及对提供健康信息的基础设施的担忧,生活方式,和曝光轨迹,疾病的发展,和风险因素随着时间的推移。
方法:我们在瑞士健康研究试点阶段(2020-2021年)使用了基于情景的问卷,涉及来自沃州和伯尔尼州的1349名20-69岁的成年人。我们在R和定性内容分析的支持下进行了描述性统计,对n=374个与研究态度相关的公开回答进行了定性内容分析。
结果:我们强调了基于场景的方法的好处和挑战,讨论试验阶段中代表的样本,并提出了建立完整队列的含义。我们还报告了参与者对健康研究的态度和以前的经验。我们分析有关知情同意和反馈的参考文献,对瑞士健康研究的态度,以及关于改进其范围的建议,设计,和仪器。结果表明,参与国家健康研究的兴趣很高(90%),85%的随机人群样本愿意加入长期队列。只有43%的人熟悉生物银行,44%的人倾向于普遍同意。对瑞士的公共研究的信任度很高,但对其他国家或私营部门的研究人员的信任度较低。超过95%的人表示愿意完成在线调查问卷,接受体检,并捐赠生物样本。几乎所有参与者都想从他们的研究中心访问中了解医学测试的结果(99.5%)和暴露于环境压力源(95%)。监测睡眠的首选工具,身体活动,和饮食是已知的智能手机应用程序与自动数据管理。
结论:总体而言,这项研究揭示了对个性化健康研究的积极态度,具有强烈的分享数据和样本的意愿。关键见解集中于知情同意参与的含义,抽样和代表性的相关性,以及个性化反馈的重要性和挑战,特别是关于环境健康的问题。调查结果强调参与者的支持性但反身性立场,强调在个性化健康研究中调整研究价值与个人价值的重要性。这些见解有助于细化范围,设计,以及未来队列研究的工具。
BACKGROUND: This paper explores the feasibility of establishing a large-scale population-based cohort and biobank in Switzerland by assessing potential participants\' needs, expectations, and concerns about such an infrastructure providing information on health, lifestyle, and exposure trajectories, the development of disease, and risk factors over time.
METHODS: We utilized a scenario-based questionnaire in the Swiss Health
Study pilot phase (2020-2021), involving 1349 adults aged 20-69 from the cantons Vaud and Bern. We conducted descriptive statistics supported by R and qualitative content analysis of n = 374 open responses related to attitudes towards research.
RESULTS: We highlight the benefits and challenges of the scenario-based approach, discuss the sample represented in the pilot phase, and present implications for building a full cohort. We also report on participants\' attitudes towards and previous experience with health research. We analyze references regarding informed consent and feedback, attitudes towards the Swiss Health
Study, and recommendations on improving its scope, design, and instruments. Results indicate a high interest (90%) in participating in a national health
study, with 85% of a random population sample willing to join a long-term cohort. Only 43% were familiar with biobanks, and 44% preferred general consent. Trust was high for Swiss-based public research but lower for researchers from other countries or private sector. Over 95% expressed willingness to complete online questionnaires, undergo physical examination, and donate biosamples. Almost all participants wanted to know the outcomes of the medical tests (99.5%) and the exposure to environmental stressors (95%) from their
study center visit. Preferred tools for monitoring sleep, physical activity, and diet were known smartphone apps with automatic data management.
CONCLUSIONS: Overall, the
study reveals a positive attitude towards personalized health research, with a strong willingness to share data and samples. Key insights focus the meaning of informed consent for participation, the relevance of sampling and representativeness, as well as the significance and challenges of personalized feedback, especially regarding environmental health concerns. Findings emphasize participants\' supportive yet reflexive stances, underscoring the importance of aligning research values with individual values in personalized health research. These insights contribute valuable considerations for refining the scope, design, and instruments of future cohort studies.