What about Privacy?

Fundamental to any broad and pooled use of health data is the right for an individual’s identifiable data to remain private.  Any request to governments or institutions for data must include the caveat that the data will be de-identified and anonymized. If the government is unable to do the work to fully protect privacy, then companies assigned the work must commit to de-identification and anonymization.

Part of the Data Donor Movement’s effort is to make sure de-identification of donated data is enshrined in whatever process will be created for donations and research to take place.

We also note that using “privacy” – into and unto itself – as an excuse or reason not to release data, simply ignores the many methods available to protect and secure an individual ‘s privacy.