UN Expert Addresses Privacy and Health Rights Concerns in Digital Technology 

Alexandrine Pirlot de Corbion and Timothy Wafula

Digital technology and its benefits and risks to the right to health are the focus of the latest report by the United Nations Special Rapporteur on the right to health. Tlaleng Mofokeng, the Special Rapporteur, is presenting her thematic report “Digital innovation, technologies and the right to health” to the UN Human Rights Council on Thursday 22 June, 2023.

We highlight four issues addressed in the report: the unprecedented threats to privacy; the intrinsic link between the enjoyment of the right to privacy and the right to health; the impact digital technology has on communities especially those already experiencing discrimination; and finally, the need to ensure the participation of civil society and affected communities in digital health governance.

The Special Rapporteur explains that the right to privacy has come under threat from digital health innovation because the technology sector has disregarded human rights and, in particular, privacy considerations. The report cites examples of abuse which have recently come under media scrutiny including the UK NHS Trusts sharing data with Facebook without patients’ consent, reports of a data leak of India’s Covid-19 database, CoWin, and sexual and reproductive data being monetised.

Importantly, a new and key message which emerges from the report, is that the digitalisation of health services can impact all the core elements of the right to health, including the right to sexual and reproductive health. Many of the concerns raised are intrinsically linked to privacy, and here’s how. The over-reliance and in some instances the complete transition to digital health is impacting the availability of health care due to the digital divide, amongst other barriers. We have seen governments and companies become the gatekeepers of sexual and reproductive health information and services, limiting access for those unable to use digital technology. Poorly designed and unsafe tools are hindering the delivery of quality care. Repeated breaches and misuse of health data by governments, and the increased involvement of the private sector, are undermining trust and as a result impacting acceptability. The way these issues interplay illustrates that not only is the right to privacy a right in and of itself but it also protects other rights including the right to health.

Individuals and communities who already experience stigma, discrimination, surveillance, criminalisation, and violence are disproportionally impacted by digital technologies. This is a concern which Kenya Legal and Ethical Issues Network on HIV and AIDS (KELIN) has been documenting about persons living with HIV.

Furthermore, national and global governance of digital health has not been inclusive and the report reminds governments that a right-based approach requires the participation of civil society and communities in decision-making. The report particularly highlights the need to include young people, echoing recommendations put forward by civil society and more recently by the Digital Health and Privacy Consortium.

The report is critical of governments’ and other stakeholders’ lack of willingness “to apply human rights frameworks to the development, use and regulation of digital technologies” (paragraph 6).

And we don’t have to go very far back in time to find evidence of that. During the COVID-19 pandemic a lack of human rights due diligence saw the adoption of untested or poorly tested technologies which had an impact on fundamental rights, including the right to health of women and marginalised groups, migrants, and the elderly and ethnic minorities.

But let’s not be fooled by the excuse of urgency. Long before COVID-19, digital heath innovation and technologies were being deployed without a clear understanding of their impact. In many contexts including India, Kenya, Costa Rica, Guatemala, and Panama, to name a few, this was occurring in a regulatory void without adequate data protection. Existing safeguards were also not enforced, as seen in the UK, Argentina, and France.

The Special Rapporteur’s analysis and recommendations are therefore a timely reminder of the urgent need for a human rights-based approach to digital health innovation and technologies. In September 2022 the Office of the High Commissioner for Human Rights declared that “Human rights should be at the heart of tech governance”, and more recently the Director-General of the World Health Organization said when he declared that COVID-19 had ended as a global health emergency, that “existing tools and technologies were not best used to combat the virus”.

Rights-based governance and accountability is indeed needed urgently with the global digital healthcare market anticipated to keep growing, and AI making headlines in the health sector. The report concludes with a set of recommendations for governments and other stakeholders, including the private sector, calling on them to change their current approaches to digital health innovation and technology to ones which serve people and comply with human rights obligations.

Alexandrine Pirlot de Corbion is Director of Strategy, Privacy International, London, UK.

Timothy Wafula is Programme Manager, Health & Governance, The Kenya Legal & Ethical Issues Network on HIV and AIDS (KELIN), Kenya.