Paving the way for more transparency in health data

A teacher uses a thermometer to test the temperature of students, checking for possible Ebola fever at Adekunle primary school in Lagos, Nigeria. Source: Keystone.

The right to privacy is a human right, as is the right to personal data protection. The International Committee of the Red Cross (ICRC) underlines their fundamental importance for humanitarian organizations, in the second edition of the Handbook on data protection, published last week. It is also particularly sensitive when health is concerned.

The AI for Good Global Summit discussed the issues of health in relation to the wellbeing of future generations in a webinar this week. Anthropologist and human rights advocate of the Graduate Institute in Geneva, Meg Davis was among the speakers. She invites us not to forget the human rights factor.

Why this matters. New technologies designed to collect health data offer great opportunities to help combat the global challenges the world is facing today. The risks associated with their use pose real threats, however, including breach of privacy, and discrimination. These need to be averted now for the future generation said Davis:

“It’s really about the governance of these technologies and specifically for young people and children, because whatever decisions we make now is going to shape their futures and they have very little say in how these decisions are made, especially in low resources and developing countries.”

If younger people are certainly living a more digital life, they are also more vulnerable to some of the health issues we are currently dealing with, such as HIV for example, Davis continues. Technology can gather their data but might also shape their choices and direct them. That’s why it is important that they have some awareness and choices, so they can make the right decisions for themselves. But can these decisions really be made when the private sector is in control of the technology itself?

Harvard Professor Shoshana Zuboff describes the impact of big tech on our lives. The tech monopolies diverge from the principles of capitalism. They are distancing themselves from their own societies and the population, by being mostly interested in our data. In her 2019 book The Age of Surveillance Capitalism: The Fight for a Human Future, she goes even further. We as humans become the products. The more data is collected and fed to AI systems, the better our actions can be predicted and our actions steered in one direction or another. What does this say about democracy?

Issues in health. The dominance of big tech firms has consequences for health data collection as well. Davis highlights two main issues. Firstly, the people whose data cannot be gathered or only partially must be considered, because of the way discrimination, marginalization and stigmatization take place especially for LGBT people, sex workers, drug users, migrants or refugees. In other words, if their data is not gathered or gathered accurately, their needs might not be prioritized.

“We then enter a circle where the absence of evidence becomes the evidence of absence.”

Secondly, some practices can be very intrusive and violate privacy, without people being really aware of it. Contact tracing apps are one example, where live experimentation is happening in some universities to try to figure out how to manage youth in the context of the pandemic.

“There has been a lot of hype around digital. It’s difficult to separate what’s for the public good and when the public good is used for private interests. There are a lot of private interests in the digital sphere, very powerful ones. We have to be very clear about whose benefits and harms we are talking about.”

A need for change. One thing is clear: if the answers are not all there yet, bringing the more sensitive issues to the public attention is a good start to reach more transparency on the subject. How is data collected? Where is it stored? How it is used? Who has access to it? As an anthropologist, Davis reflects on the change that is taking place, as power is being contested in many ways.

“We have different social forces that are shifting and mobilizing in really new ways and a lot of these questions are up for grabs in a way they hadn’t been before. It was always assumed before that they are people who know and study, and that there are people who are the object of study and have their data gathered. I think this is changing in ways that can potentially be very exciting.”

Next steps to come.  Meg Davis has launched a research project mobilizing AIDS activists who are fairly young and diverse. The goal is to help them understand the possibilities and the risks around these new technologies, and observe what they end up doing with that in promoting human rights standards.

The standards are precisely what is missing today to uphold human rights in the governance of digital health, better informed by human rights law but also by the experience of communities, especially younger people. The ICRC’s new handbook certainly addresses many of the issues. It is now not only up to humanitarian actors, but also to authorities and the private sector to act upon them.