The balance between openness and privacy for health data collected through citizen science: various perspectives

Transcript of a 1.5 hour focus group discussion with 2 citizens, a data steward, an ethicist and a citizen science researcher. The group discussed their willingness to share data collected in citizen science for health projects in repositories, the desired level of openness, and how data sharing policies should be communicated with participants in the research projects. The discussion was held in Dutch, an English translation (translated by the reseachers themselves) is also available. A public summary of the results can be found through this link: https://www.topfitcitizenlab.nl/wp-content/uploads/2022/02/Outcomes-focusgroup-FAIR-and-privacy_english-1.pdf The project was carried out as part of the TOPFIT Citizenlab, a fieldlab focusing on citizen science for health and wellbeing.

本次数据集为一场1.5小时焦点小组讨论的实录，与会人员涵盖2名普通市民、1名数据管理员（data steward）、1名伦理学家与1名公民科学（citizen science）研究员。本次研讨围绕三大核心议题展开：健康领域公民科学项目所采集数据向数据存储库共享的意愿、期望的数据开放程度，以及研究项目中应如何向参与者传达数据共享政策。本次讨论以荷兰语开展，同时配有由研究者自行完成的英文译版。本次讨论结果的公开总结可通过以下链接获取：https://www.topfitcitizenlab.nl/wp-content/uploads/2022/02/Outcomes-focusgroup-FAIR-and-privacy_english-1.pdf。本项目作为TOPFIT公民实验室（TOPFIT Citizenlab）的子项目实施，该实验室是专注于健康与福祉领域公民科学的实地研究平台。