Kenya Key Population Consortium wrote to partners and donors on the proposal by the Kenya Government – funded by the Global Fund (GFTAM) and with technical assistance from PEPFAR – to use biometric fingerprinting for the collection of Key Population size estimates during upcoming IBBS Study.
The communication highlighted fears of safety that the populations faced with the use of biometrics due to criminalization of the three target groups for the study.
Consultative meetings were held with Government and stakeholders post the letter to try and come to an agreeable conclusion and the consortium reached out to researchers, allies and partners on safe methods of data collection and would also minimize duplication fears by the Government.
The Kenya Key Population would like to share this after the various meetings with partners, donors and Government.
- We would like to reiterate that the Kenya Key Population Consortium is in support of the IBBS study and its component of collection of size estimate for key populations but do not support the use of biometrics as a method of data collection.
- The Consortium believes that any use of biomarkers—finger printing, iris scanning, toe scanning—will introduce fear and uncertainty among communities facing criminalization about the safety of healthcare clinics. This will serve only to drive people away from healthcare and reduce participation in the IBBS.
- The Consortium also notes that experts suggest previous estimates significantly under-estimate the size of key populations, so evidence suggests under-sampling is a far greater concern than duplication.
- Size estimation surveys do not require such biomarkers—capture/recapture as well as a range of other methodologies have been used with success (although they generate conservative estimates, see point 3).
- Highly respected researchers have collected data through referral systems and have not had major challenges of duplication of participants that would skew the findings.
- Most of the highly respected key populations estimates have not used biomarkers in any form.
- Methods researchers have effectively used in these studies to reduce duplication of participants without the use of biometrics include UIC introduction for all health system users, not just for key populations (which could help with retention and mobility), effective staff training and timely completion of the study without major staff turnover, which would ensure repeat visitors would be noticed by staff, coupons for referrals which are linked to each other, to help identify clusters of unusual answers, research notes that highlight physical features/characteristics of the participants (linked to the coupon) and would be able to be used to identify repeat participants, entry of characteristic data of participants in real time could also reduce duplication of numbers in the different study locations.
- Despite the widespread call for data disaggregation, there has been relatively little discussion on the concrete methods of data storage that ensure safety of data collected and implications of data falling in the wrong hands. Methods of storage of data can pose challenges if the safety, handling and security are not of high quality. 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. Our research of current methods of storage of data collected from Kenya (SWOP Clinic) have very basic methods of data storage that does not ensure safety of end users. Kenya also has example of cases where data for people living with HIV being collected without the consent by government in an effort to reach children living with HIV. Kindly refer to the KELIN case on the presidential directive on HIV data collection
- The use of coded fingerprints does not stop unauthorized persons 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.
A human rights approach to data disaggregation requires not only reaching the most vulnerable and marginalized groups, but implies ensuring that high human rights driven safeguards are in place for the collection, processing, analysis and storage. The use of biometrics has no benefit such as increase of retention and adherence and other programmatic benefits to the communities and will only be used to reduce challenges of duplication. The use of biometrics will only increase the fears of already stigmatized and criminalized communities to access services and increase the level of the threat of harassment by law enforcement agencies in the country. The Kenya Key Population Consortium retains its stand: 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 generating data in order to promote and defend the human rights of Key Population to quality, stigma-free services.
The Kenya Key Population Consortium consists of networks of sex workers, men having sex with men and people who inject and use drugs in Kenya