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UN expert warns of enormous privacy concern over health data

NEW YORK (29 October 2019) – The UN Special Rapporteur on the right to privacy, Joseph Cannataci, has unveiled a set of international standards on how health data should be used and protected, warning of enormous threats to privacy if the industry is not regulated.

“My recommendations, which I believe are the first of their kind, provide a common international baseline for minimum standards of protection for health data,” said Cannataci, presenting a report on them to the UN General Assembly.

“Health-related data is very sensitive and has high commercial value. There is a largely hidden industry that is already collecting, using, selling and securing health data. This has a major impact on our privacy and is of enormous concern.”

The recommendations set out good practices for data management, and address particular issues such as electronic health records, mobile apps, marketing, and employers’ and insurers’ access to health-related data. They also take into account groups with particular data protection needs, such as indigenous peoples, people living with disabilities, refugees and prisoners.

“Health technologies, if used in a way that respects the privacy of patients, can assist health practitioners and researchers as well as those seeking healthcare, but this cannot be at the expense of people’s privacy,” the Special Rapporteur said.

“The release of ‘unit record’ health data as Open Data is incompatible with privacy obligations, as is the use of health data for marketing purposes without free, informed and explicit consent.

“I will be delighted to work with States, civil society organisations and all sectors of society, including the private sector, so we can exchange best practices on how to implement these recommendations.”

Cannataci reminded States and data processors that they were legally obliged to ensure the highest attainable standard of protection of health-related data, regardless of factors such as people’s disability, gender identity, origin, nationality or age.

The recommendations were developed in consultation with health practitioners, civil society organisations, States and others, after evidence that there was a need for international guidance.

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