Driving Key Populations Further Underground

Data gaps & inconsistencies matter. The notion of who is counted, and when they’re counted, is a political act. It comes bundled with the motives, blind spots, capacities and values of the persons designing the data collection exercise, and the collecting and analyzing of this data. Often, the decision on what groups are counted determines access to services- or lack thereof- and it’s not a stretch to say that marginalization and exclusions in the ‘real world’ tend to be mirrored during the data collection. The accuracy of the data, as witnessed by the prevalence of ghost plants and contested elections also underscores just how political data is, and differences over numbers and people is one that is played out over and over again.  

In Kenya, this contestation is currently being seen in the fight against HIV/ AIDS. Some activists and NGOs working in this sector contend that key populations - namely Female sex workers (FSW), men who have sex with men (MSM) and persons who inject drugs (PWID) are grossly under-counted. The Government on the other hand disagrees and thinks that this number is grossly over-inflated.

One of the most important tools in combating HIV/AIDs, is captured in the aphorism “Know your epidemic, know your response”. A useful tool in gathering epidemiological data is the Integrated Biological and Behavioural Surveillance (IBBS) Survey which has received good reviews on usability and adaptability for local conditions. The Government of Kenya proposes to use the IBBS to figure out the true numbers of key populations in Kenya. All textbook perfect and laudable. Except! They want to use biometric authentication  for this survey for the IBBS.

Say what?!!!

Assuming that this is all on the up-and up, this is utterly wrong and misplaced from a data & health privacy perspective for all persons involved.  As a general rule, biometric data should only be collected when absolutely necessary and isn’t excessive for achieving the stated purpose. The collection of biometric data should also be done in a way that minimises potential risk to the relevant persons. One senses that the Government is struggling to understand and work through the ramifications of creating patient friendly laws and services that don’t violate patients’ rights. Yesterday, the law courts struck down an ill-advised directive by the president, ostensibly meant to improve services, which called for the collection of information on HIV+ children & pregnant mothers by Government officials including chiefs (!). Last year, the High Court struck down provisions of a HIV AIDS  law that allowed disclosure of HIV/AIDS status by health care workers and declared it unconstitutional and an infringement on Kenyans’ privacy. To be fair, the issue of responsible data collection is a global challenge, and not just a Kenyan one. It is however clear by now that the collection of (physical) biometric information requires a high standard of care. If say, the database is hacked, unlike address or phone, one cannot change one’s biometric data once this is compromised.

And while all my privacy and health rights hackles rise at the above concerns, what should perturb all of us is that this is being done in a context where homophobia and negative attitudes against sex workers are rife. Criminalisation of sex workers & LGBT persons is on the increase in East Africa, and is very much present in Kenya. It is therefore extremely worrying and troubling that the Government would propose to carry out this exercise that would provide personally identifiable information on key populations. Even more worrying is that this seems to be going on with the support, or at least the acquiescence of the Global Fund who have from the very beginning been key allies in the use of a human rights approach to treating and working with HIV/AIDS. This idea should have been shot down from the very beginning, and I’m aghast that it has gone as far as it has without the Global Fund weighing in. As designed, this will increase discrimination against the very population it’s meant to serve, and drive key populations away from services. The very opposite of what this IBBS survey is intended to do.

And to come up with a policy that drives Kenyans away from much needed services is both a great pity and shame.