What new ethical problems does the ubiquitous availability of health data create?

More "abnormal but not pathological" findings force a renegotiation of what counts as healthy or sick; illness is increasingly seen as the result of personal behaviour, which threatens solidarity; some data only reveals its meaning years later; and the line between health data and other data dissolves, so the purpose of use must be clarified before collection.

Data comes from two sources: content data (the information itself) and the metadata generated when using devices (use, time, duration, surroundings, behaviour). Health insurers often hold more data than hospitals.

The consequences:

• "Not normal" but "not pathological": the more you measure, the more deviations you find. Does that require renegotiating the boundary between "healthy" and "sick"?
• Illness as personal responsibility: illness is understood less as fate and more as a consequence of personal behaviour and lifestyle, which endangers solidarity (e.g. calorie-tracking software as evidence of who "deserved" their illness).
• Delayed meaning: some data will only show its significance in 10+ years, so consent today cannot foresee its uses.
• Blurred categories: the line between health data and non-health data dissolves (step counts, shopping, location), which requires clarifying the purpose of use before collection.
• Digitalisation also brings the expectation that people behave and live more healthily.

Go deeper:

• Wikipedia: Medical privacy — how health data is protected and where it leaks.