Real challenges exist in improving human rights within the digital world of health, according to the UN Special Rapporteur on the right to health, Dr Tlaleng Mofokeng, addressing a UN Human Rights Council (HRC) side event on Friday. 

Shortly after submitting her report on “Digital innovation, technologies and the right to health” to the HRC, Mofokeng said: “We will need to ensure that rights holders know their rights. They understand that digital technologies are not just a safe space.”

The COVID-19 pandemic brought to the fore the use of digital systems and artificial intelligence in healthcare. For many, health care was only provided through online appointments with health professionals. 

Meanwhile, the use of the track-and-trace applications used by many governments worldwide raised legal and ethical questions about people’s private and personal human rights. 

Due to the speed at which the pandemic hit, new rules were often introduced speedily, without the necessary guarantees to protect human rights that other regular frameworks would include. 

The Special Rapporteur’s report analysed the impact of digital technologies on privacy and data protection, and these issues were brought up several times during Friday’s event. 

“Companies such as Facebook have been quietly amassing health data for years,” Mandeep Dhaliwal, director at the HIV and Health Group, Bureau of Policy and Programme Support, United Nations Development Programme, stated. “Now is the time to make sure that we put that on the table so that people understand that they own their data. That, for me, is fundamental to the rights-based approach to this.”

Timothy Fish Hodgson, a legal advisor on economic, social, and cultural rights at the International Commission of Jurists (ICJ), agreed, telling the audience, “The issue here is that big corporations that are operating in the space of technology and on technological platforms have control over what we do and do not share all over the world. They need to be held responsible.

“To regulate these companies is very difficult for any country because they operate on a global scale, and we need to improve that. Secondly, we need to make very clear specific guidelines for these companies.”

Aside from corporate access to private health data, a second central area of concern related to the impact of growing digital use in countries, particularly in the Global South, where medical data could help perpetuate racism, sexism, or other forms of discrimination – such as countries where abortion is illegal or LGBTQ+ rights are infringed upon. 

One example explained how a woman who approaches a doctor about abortion in a state where abortion is criminalised may risk repercussions for herself and her doctor unless safeguards protecting her right to privacy are maintained. 

Documentation and criminalisation

“There is a direct line between documentation and criminalisation of marginalised groups all around the world, which needs to be taken seriously in this process,” Fish Hodgson said. 

The report concludes with 23 recommendations for the HRC, stating, “Vulnerable groups who face multiple forms of discrimination and oppression in some cases lack access to digital technology and face criminalization, stigmatization, and state surveillance.”

“If we are not thinking properly and thinking through, we run the risk of actually further marginalizing people because the issues of privacy data breaches are heightened,” Mofokeng said.

“Some states have used data searches on your phone, which leave a digital footprint. They can then go and ask the police to trace your search history or retrieve your search history. If you find that it is related to abortion or contraception, they may charge you, and you may end up in prison.”

Mofokeng’s report reiterates the need for state actors to ensure their responsibilities are fulfilled, affirming: “States must embed human rights principles of equality, non-discrimination, participation, transparency and accountability in implementation, in order to meet their obligations to respect, protect and fulfil the right to health in relation to digital innovation and technologies.”

Joyce Ouma, Advocacy and Campaigns Officer at the Global Network of Young People living with HIV (Y+ Global), was optimistic about digital healthcare. 

“Digital technologies and digital health are bringing us closer to Universal Health Coverage. They are bringing us closer to self-care, to taking self-care where we, as young people, can take control of our own lives and our own health,” said Ouma.

As the report maintains, digital innovation and technologies can be an asset when used appropriately to realize the right to health. However, it is up to the HRC to implement the Special Rappoteur’s recommendations as best they can and ensure states and companies protect the rights of all. 

The event was organized by the Kenya Legal and Ethical Issues Network on HIV and AIDS (KELIN) in collaboration with the Permanent Mission of Brazil in Geneva, the Permanent Mission of the Federal Republic of Germany in Geneva, Global Network of People Living with HIV (GNP+), Privacy International, STOPAIDS, the Global Health Centre of the Graduate Institute, International Commission of Jurists (Africa), the Global Governance Centre at Geneva Graduate Institute, and the Centre for Interdisciplinary Methodologies at University of Warwick.