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.