Why does the Government want to know where you live, what you do, who you sleep with?
Whereas efforts to estimate the size, track HIV prevalence, and understand HIV knowledge among Key populations (men who have sex with men, sex workers, and those who use or inject drugs), and for these populations to get sufficient access to services are welcome, concerns have been raised around the use of biometric identifiers—most often fingerprints—to track participants in these efforts, and ensure the same person does not get counted twice.
Collecting and storing the biometric data of people already facing criminalisation, raises a host of ethics and human rights concerns.
Many civil society and community groups have begun voicing concern about the use of biometrics to track, monitor and research their communities, and now the entire Key Population network of Kenya is raising the alarm over a proposal by the Kenya Government – funded by the Global Fund and with technical assistance from PEPFAR – to use biometric fingerprinting for the collection of Key Population size estimates during an upcoming IBBS Study.
Agreeing that biometric identification might improve data gathering, in the context of same sex criminalisation, illegality of engaging in sex work, and continued criminalisation of drug use in Kenya, the insistent use of biometrics raises concerns that are insufficiently addressed in current policies.
It is common knowledge that such data collection, and data storage is an infringement of one’s privacy, and may even expose persons to risks of legal action or violence. Already, with these concerns, which are not being addressed, trust in the health system has fallen.
Consultations with these Key Populations, spearheaded by community organisations, have shown that they are in full support of the IBBS study and its component of collection of size estimate but do not support the use of biometrics as a method of data collection.
Furthermore, the use of biomarkers—finger printing, iris scanning, toe scanning—will introduce fear and uncertainty among communities already criminalised about the safety of healthcare clinics. This is in addition to other self-incriminating details such as phone number, home address, HIV status, place of work, etc., that will be used during this study. Such will only serve to drive people away from healthcare and reduce participation in the IBBS study.
One argument for the use of biometrics is the the copy-paste of data and information, e.g. a participant being recruited twice for the same study. Granted, experts have suggested that previous estimates significantly under-estimated the size of Key Populations in the country, so evidence suggests under-sampling is a far greater concern than duplication in the study.
More importantly, however, size estimation surveys do not require such biomarkers—capture/recapture, respondent driven sampling as well as a range of other methodologies have been used with success. Researchers have collected data through referral systems and have not had major challenges of duplication of participants that would skew their findings. In fact, most of the highly respected Key Populations size estimates, used globally, have not used biomarkers in any form.
Apart from data collection, another key concern that has been voiced is data safety and storage. Methods of storage of data can pose challenges if the safety, handling and security of the data is compromised. There are still questions on data access by unauthorized persons and capacity by various sections of Government to force data handlers to share information collected.
In fact, the use of coded fingerprints does not stop unauthorized person who are unable to gain access the the larger database, but have access to the data collection machines, from using them at areas considered as ‘hotspots’ to identify Key Populations whose data is in the system without the need to access the larger database.
We do not support the use of any biometric data collection but instead recommend enhancing the use of the other methods to ensure a high quality study that will generate data to promote and defend the human rights of Key Population to quality, stigma-free health services.
Our advice to the Government is that we are ready to dialogue on this as we map out key ethics and human rights considerations regarding the use of biometrics in HIV surveillance among Key Populations.
We are ready to talk.
Denis Nzioka – Denis Nzioka is a gay rights activist based in Nairobi, Kenya
Key Populations Consortium – The Key Populations Consortium is a network of organisations serving sex workers, men having sex with men and people who inject drugs in Kenya