Navigating Health Data Ethics

Navigating Health Data Ethics

Health Data Ethics Map

Finding a new way to navigate personal data ethics in health research

We created the Health Data Ethics Map as a prototype that visualizes the complexity of inter-connected health data responsibilities and rights. The map is based upon the Swiss Personalized Health Network's"Ethical Framework for Responsible Data Processing in Personalized Health Research."

A tool to explore health data ethics responsibilities and rights.

why

we believe this tool is important

  • To promote discussion and learning
  • To communicate important key ethical principles
  • To highlight the complexity and inter-connectedness
  • To help you navigate health data ethics creatively

Methodology

an interative approach

Aim

To visualize, as a system of inter-connected components, ethical guidelines for responsible usage of personal data and samples in health research.

Elements

Elements inductively deduced using a qualitative content analysis process.

Visualization

Positions of elements determined through a process of concept mapping using results from coding.