UN expert calls for meaningful participation in national and global governance of digital health


A UN expert today called for a human rights-based approach in national and global governance of digital health which ensures the meaningful participation of civil society and communities and young people.

In her third report to the Human Rights Council, Tlaleng Mofokeng, UN Special Rapporteur on the right to health, focused on digital technologies and the right to health. The report analyses the impact of digital innovation and technologies on the right to health, including the availability, accessibility, acceptability and quality of facilities, goods and services. It also analyses the impact of digital technologies on privacy and data protection.

“The growth of technological innovation has been rapidly redefining and reshaping the right to health,” Mofokeng told the Council. “Although new technologies can foster inclusion, participation and new opportunities to improve access to underlying determinants of health, digital transformation may also undermine the right to health, if they are developed, used and regulated without consideration for their human rights impact,” she said.

The report indicates that digital innovation and technologies offer important positive opportunities to actively address and overcome socio-economic inequalities by empowering women, and marginalised groups to better realise their sexual and reproductive health rights. It also stresses that the use of digital technology for sexual and reproductive health services comes with risks, in particular surveillance by both State and non-State actors in the context of criminalised health services, such as abortion.

In her report, the Special Rapporteur seeks to clarify the legal obligations that arise under the right to health framework, from an anti-discrimination perspective, recalling that the same rights that are protected offline must be protected with the use of digital tools and in online spaces.

The expert highlights that private ownership of personal medical data, in a low data privacy setting and with limited oversight, intensifies concerns as to how genomic data can be used for capitalistic gain by businesses, and used in police surveillance and law enforcement, which further creates vulnerable situations for certain groups of people, for example, those with HIV, migrant populations and LGBTIQ+ communities.

“There are a number of global and national efforts that are now underway to strengthen the governance on digital health,” Mofokeng said and added that “meaningful participation is key.”

“All stakeholders must respect principles of non-discrimination, equality and privacy,” the expert said. She also noted the importance to count on a policy approach to the right to health regarding digital innovation and technology, to allow for transparency, accountability and recourse when rights are violated.

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