The international consultation on health data convoked by the UN Special Rapporteur on the right to privacy (UN SRP), Joe Cannataci, took place in Strasbourg on 11-12 June 2019 and was very successful, productive and enabled in-depth interdisciplinary and international discussions on the protection and use of health-related data.

As a result of the meeting and after due consideration of all comments received before and during the meeting, the UN SRP Task Force on Health Data has produced a revised version of the draft Recommendation.

Summary

There is increasing awareness on the sensitive nature of health-related data. In the digital era, such data are captured and used in a myriad of ways, frequently without the concerned individual’s consent or awareness. The industry of collecting and using health-related data and the growing number of data breaches are of enormous concern.

It was against this background that the Special Rapporteur established the Task Force on Privacy and the Protection of Health-Related Data in 2017 to prepare a recommendation on the protection and use of health-related data for Member States to use as an international baseline of minimum data protection standards for health-related data. It incorporates the results of global consultations and several hundred comments from stakeholders.

The foundations of the recommendation are that everyone has the right to the highest attainable standard of physical and mental health and to the highest attainable standard of protection for their health-related data, irrespective of disability, gender, gender identity, gender expression or other factors. Consent is emphasized to protect human dignity and integrity, while provision is made for uses of health-related data that are in the public interest (such as scientific research), with appropriate safeguards.

Contained in the annex is an abbreviated version of the recommendation, focusing on key elements. When transposing it into domestic law, States should use the full version.