By Sara L.M. Davis and Allan Maleche
Hands off our fingerprints! That was the message from Kenyan civil society activists who blocked the use of biometric data, such as fingerprints or iris scans, in a government study of HIV.
This case study of rights advocacy is the subject of a report, Everyone Said No: Biometrics, HIV and Human Rights, a Kenya Case Study, published by KELIN and the Kenya Key Populations Consortium.“Key populations” in HIV are defined by WHO as sex workers, men who have sex with men, transgender people, people who inject drugs, and people in prison or other closed settings. The case study was written by the authors of this blog and researchers at KELIN and the Key Populations Consortium. It provides an overview of the HIV epidemic and data gaps on key populations in Kenya, an analysis of the legal and human rights issues in use of biometrics in HIV research, and documentation of the advocacy by key populations groups in Kenya. It also makes recommendations to global health donors, Kenyan authorities, and civil society groups who face similar debates in other countries.
The purpose of the government HIV study was to fill critical gaps in data on key populations in Kenya, to enable better targeting of resources (see Table 1). The government research team aimed to use biometric data to manage the risk of double-counting, given that key populations tend to be highly mobile. As soon as Kenyan key population groups learned about the plan to use biometrics, they became vocal in their opposition, citing concerns about criminalization. In Kenya, sex work, drug use, and same-sex sexual behavior are all criminalized. Through persistent advocacy, they successfully blocked any use of biometrics in the study. It will proceed using other methods.
|Table One: Official key population size estimates and HIV prevalence reported by Kenya to UNAIDS|
|Key population||Size estimate reported to UNAIDS||HIV prevalence reported to UNAIDS|
|Sex workers||130,000||Not available|
|Men who have sex with men||13,000||18.2%|
|People who inject drugs||18,000||18.3%|
|Transgender people||Not available||Not available|
|Prisoners||Not available||Not available|
Our research team, made up of an anthropologist, lawyers and key populations activists, worked together to review laws and academic literature on biometrics. To understand the concerns and the series of events, we also spoke with representatives of key populations organizations, HIV service organizations and human rights experts in Nairobi. We requested to meet with Kenyan health authorities, PEPFAR, the Global Fund, and UN agencies, but were unsuccessful. Our report looks at arguments used on both sides, analyzes legal issues, and documents the successful advocacy by key populations.
What are biometrics? Biometrics involves gathering raw data (or “enrolment”) such as fingerprints, iris or retina scans, DNA or toe prints. The data are stored and may be read later. Newer forms of biometrics can also identify individuals through gait, voice, heartbeat and silhouette. Government agencies may soon be able to conduct iris scans and recognize faces in crowds. Biometrics are used at a growing number of border controls to monitor suspected terrorists and prevent illegal migration. They are also used in court cases, for identity cards, and in private business: if you’re reading this on an iPhone, you may have used your thumbprint to turn it on. The growing use of this technology raises questions about the state’s role in tracking individuals, data ownership, and how data are—or should be—controlled.
The Sustainable Development Goals urge states to “leave no one behind” in the push to end HIV, tuberculosis and malaria by 2030. This is creating a demand for better and more precise data.
What are the concerns? Kenyan key populations we spoke with highlighted the risk of function creep in use of biometrics: data collected for one purpose can easily be used for another. For example, could police use fingerprints from an HIV study to target key populations for prosecution? They also flagged concerns about the risk of data breaches that could expose stigmatized populations publicly to their families, the police, and other communities, risking discrimination, stigmatization by health care providers, harassment, and incarceration.
Participants in our research also had concerns about this personal data being used for private business interests. One activist spoke about Microsoft’s capture of bio-identifiers of Kenyan schoolchildren (see here), ostensibly to send text messages to their parents reporting that they were in school. But the activist wondered what kind of consent children can give, how long their data might be stored, and how else it might be used in the future. While biometric data in some ways are not qualitatively different from the use of identification cards, they are more deeply intrusive and spark different fears.
How did civil society advocacy affect the process? Kenyan key populations groups originally came together during an earlier round of grant negotiations with the Global Fund, and established a national consortium. This gave them an existing relationship and framework for cooperation. They quickly developed a shared position on the government study and agreed on their bottom line, maintaining a disciplined unity throughout negotiations with national health authorities.
The activists also leveraged connections with UNAIDS’ human rights team and the Global Fund Community Rights & Gender team in Geneva, as well as with prominent civil society organizations including HealthGap (see their blog on this), to push for a compromise with Kenyan authorities that would eliminate biometrics and ensure community researchers’ involvement in the study.
The end result: the government research team will proceed with the much-needed study, but without gathering any biometric data. Key populations activists will be part of the process of designing and implementing the study. “The major thing was the community coming together and speaking with one voice,” said one activist. “Civil society is now engaged from the word go. We are moving in the right direction now.”
Read the report, and the recommendations, here.
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.
Allan Maleche is executive director of KELIN, and Board member of the Developing Country NGO Delegation to the Board of the Global Fund to Fight AIDS, TB and Malaria.