Sara L.M. Davis
Data has been a hot topic throughout the first two days of AIDS 2018—who has it, how to get it, and what kinds of data can speed progress to the end of AIDS. But while new technologies are generating real excitement among donors and researchers, human rights activists are rarely in these discussions, leaving questions of risk and ethics largely in the shadows.
Some new methods that are rapidly on the rise include:
- Geospatial mapping, which uses individual data to map key population hotspots and patterns of migration
- Biometrics, the collection of physical markers such as iris scans, fingerprints, or facial scans that can identify individuals, and
- Phylogenetics, the use of molecular sequencing data, such as DNA, to trace historical relationships among people and chart the transmission of viruses.
These are some examples of data use presented in the first two days: we have heard about the use of biometrics to track sex workers and long distance truckers in African transportation corridors; a Mumbai project that mapped sites around the city of men who have sex with men using Grindr, a gay dating app; use of HIV genotyping and phylogenetics to assess transmission of resistance.
For donors, planners, and agencies, new methods can solve long-standing problems. Donors naturally want to increase efficiency by locating programs when and where they will reach key populations. They also face the perpetual problem of eliminating fraud and corruption, and so they are understandably excited to hear that IrisGuard has gathered biometric data on over 1 million refugees as part of projects for the World Food Program, significantly reducing double-counting and fraud.
But who is looking questions of privacy, risk, and ethics in all the excitement? Of course, researchers may have obtained informed consent and the approval of institutional review boards, but how meaningful is informed consent for refugees who depend on the World Food Program for the food they need to survive, or for people living with HIV who turn over their data to an NGO or private company in exchange for life-saving treatment?
Once that data is gathered, it may be kept indefinitely. Risks in the future can include arrest or exposure of criminalized, hidden populations, and data breaches (whether due to hackers or poor data protection). At the biometrics panel, one panelist flagged the problems of jurisdiction over data stored on the cloud, which may not be located in the country where it was gathered.
These dangers have come into sharp relief in northwest China, where health data has become part of what the Wall Street Journal calls “a vast experiment in domestic surveillance.” In Xinjiang province, authorities track Muslim minorities using biometrics and detain persons considered high-risk in re-education camps. These methods that China is trialing could be adopted by other restrictive states once they have acquired the technology. Police have combined facial-recognition with iris and body scanners at checkpoints, apps that monitor Muslim minorities’ cell phones, and drones at the borders. A social ratings system combines this with data on purchases, internet searches, political opinions, and religious practices to identify “risky” individuals for political re-education. If it works in China, this system could soon be seen in other low-resource countries with shaky political elites, where China is a valued trading partner.
Facing increasing pressure to show the impact of aid and to eliminate corruption, donors are increasingly encouraging grantees to use these new methods. Two PEPFAR representatives participated in the biometrics panel, which was a commercial satellite organized by a private company seeking to sell its services to conference participants. When the results of research are presented uncritically, they send a message to other grant recipients.
These panels have not included representatives of communities living with HIV or affected by the use of new technologies in HIV research. At AIDS conferences, scientists often speak to fellow scientists, while down the hall at the same time, the human rights activists speak to human rights activists. Its more important than ever that these two groups to speak to each other, and challenge one another on methods and ethics. As new technologies become increasingly widespread, global health governance urgently needs a frank conversation about new risks.
Sara L.M. Davis, Ph.D. (aka Meg) is an anthropologist and writer. Her forthcoming book is The Uncounted: Politics of Data in Global Health