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.
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