Visualisation of ethics and policy
Finding new ways to navigate ethics
Ethical tools and guidelines which describe responsible data processing and data sharing are often complex and laiden with terminology. They often are thus difficult to understand for people without sufficient background knowledge. Yet, these guidelines need to be effectively communicated and be transparent if they are to inspire trust.
Against this background, we adopted a mixed-methods approach to make the ethical guidelines of the Swiss Personalized Health Network more accessible and actionable for future use. The prototype is the Health Data Ethics Map, an interactive visualization platform that communicates different responsibilities and rights related to health data.
Peer-reviewed publications
Sleigh, J., Ormond, K., Schneider, M., Stern, E., & Vayena, E. (2023). How Interactive Visualizations Compare to Ethical Frameworks as Stand-Alone Ethics Learning Tools for Health Researchers and Professionals. AJOB Empirical Bioethics, 14(4), 197-207. external pagehttps://doi.org/10.1080/23294515.2023.2201479
Sleigh, J. & J. Amann. (2022) Fostering ethical reflection on health data research through co-design: A pilot study. International Journal of Ethics Education 7, 325–342. external pagehttps://doi.org/10.1007/s40889-022-00148-4.
Sleigh, J., Schneider, M., Amann, J., & Vayena, E. (2020). Visualizing an Ethics Framework: A Method to Create Interactive Knowledge Visualizations From Health Policy Documents. Journal of Medical Internet Research, 22(1).
external pageDOI: 10.2196/16249