Visualisation of Ethics and Policy
[Status: Completed]
This project addresses the complexity and inaccessibility of ethical guidelines for data processing and sharing by developing an interactive visualization platform. Employing a mixed-methods approach, the project created the “Health Data Ethics Map” prototype to transparently communicate responsibilities and rights related to health data, enhancing understanding for those without extensive background knowledge.
Project Team
Joanna Sleigh (Project Lead)
Manuel Schneider
Julia Amann
Effy Vayena
Description
Ethical tools and guidelines which describe responsible data processing and data sharing are often complex and laden 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.
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 page https://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 page https://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 page DOI: 10.2196/16249
Interactive Visualization
We transalted the ethical guidelines of the Swiss Personalized Health Network into an interactive visual and online learning tool.
