Power, Privacy, and the People at the AIDS 2022 Conference

Sara (Meg) Davis

The International AIDS Conference is a biennial litmus test for the global HIV response: a moment to celebrate progress in research and practice, forge new connections and reconnect with allies. Human rights has long been a central topic, both on the formal program and in the Global Village where civil society gathers. This year at AIDS 2022 in Montreal, Canada, many of the human rights track sessions centered on the right of affected communities to produce the research and data that shape health decisions.

It seems ironic, then, that this global community was excluded by Canada’s overzealous immigration agency: hundreds of civil society activists and participants from the Global South were denied visas. The discrimination was highlighted by the executive director of UNAIDS, Winnie Byanyima, who reported on Twitter that she was nearly refused the right to board the plane in Geneva. The conference closed with an indelible image of empty chairs on the stage of a panel on HIV and stigma—every single panelist had been refused a visa.

As Madhu Pai and other speakers highlighted in a scorchingly blunt and timely session on decolonizing global health, this only underscored the profound inequalities that still characterize global health. But human rights was a more visible topic than it sometimes has been at this conference in the past: A major plenary session on the IAS-Lancet Commission on Health and Human Rights presented draft recommendations, including new evidence showing impact and cost-effectiveness of a police education program for people who use drugs in Mexico.

Many plenary speakers described innovative efforts to engage communities in design, implementation, and analysis of HIV research and social accountability work—as Edwin J. Bernard put it, “not just a voice but an equal voice”. For example, Solange Baptiste of ITPC presented community-led data used for advocacy on treatment access and to address stock-outs across multiple countries.

On the last day of the conference, a Big Data and AI panel chaired by Matt Kavanagh (UNAIDS) and Edwin Bernard (HIV Justice) brought together a group of powerful speakers on the contested areas of phylogenetics and biometrics in HIV science and programmatic research. These methods are on the rise in the quest for ever more precise forms of tracking, targeting, and quantification. The COVID-19 pandemic has exacerbated the demand for biometric surveillance by states in order to more precisely pinpoint future outbreaks. However, given the disproportionate impact of biometric data-gathering and AI-driven surveillance on marginalized, criminalized, and racialized groups, this kind of surveillance is increasingly contested by activists who resist police and government surveillance, from advocacy by grassroots groups such as Stop LAPD Spying in California, to litigation over abusive use of facial recognition software by human rights lawyers in Beijing.

On the panel, Naina Khanna of the Positive Women’s Network described successful resistance to molecular HIV surveillance by people living with HIV in the United States. Their opposition arose over concerns about lack of informed consent to molecular surveillance, widespread stigma, and the risk that the data could be used in courts in a context of criminalization of HIV transmission. Researcher Fairira Mutenherwa described a study finding similar concerns about phylogenetics by communities in Zimbabwe. Diana Tordoff gave a breathtaking talk as a member of the research team doing molecular HIV surveillance, describing how and why the researchers decided the most ethical response to community concerns was to pause the study.

Allan Maleche (KELIN) described how Kenyan key populations had mobilized with human rights lawyers to stop biometric data-gathering of key populations as part of Integrated Biological Behavioral Surveillance, over concerns about the potential leaking of their data to the police. He also described a new Digital Health and Rights Project, on which we collaborate, which is conducting a multi-country study on young people’s use mobile phones to access health services and advice, and how they experience the impact of digitization on their human rights. The study is finding deep concerns by young people living with HIV, young women seeking contraception and abortions, and young key populations with their rights to privacy, anonymity, and control over data that otherwise benefits foreign companies, or what some call data colonialism.

In her first thematic report, UN Special Rapporteur on the Right to Health Dr. Tlaleng Mofokeng raised similar concerns about the opportunities and risks of digital health, including risks of surveillance and algorithmic discrimination. For example, Sasha Costanza-Chock describes discrimination experienced when traveling as a “nonbinary, transgender, femme-presenting person” and how airport security scanners trained to identify male or female bodies flag non-binary people as “security threats”. She calls for design justice that centers community participation in artificial intelligence design.

Technology is reshaping power and privacy in every area of our lives. Will technology create new spaces for solidarity, movement building, and empowerment, or will it only deepen inequalities? Judging by the participation and the absences at the AIDS 2022 conference, the answer is not yet clear.

Sara (Meg) Davis, PhD, is senior researcher, Global Health Centre, Graduate Institute Geneva. Switzerland. Email: sara.davis@graduateinstitute.ch