How do you make sure that, in a township with a history of violent protests, rumours that your new clinic is really a front for a thriving business in the accumulation and sale of human blood, will not lead to a large and angry mob, turning up with used tyres and gallons of kerosene, and proceeding to burn the place to the ground?
These are some of the challenges which the Desmond Tutu HIV Foundation faced when it opened the doors of its Emuvundleni Research Centre situated in New Crossroads. Devoted to HIV prevention trials (including vaccines, microbicides and pre-exposure prophylaxis) it had to find a way to conduct research on perhaps Africa’s most intensely stigmatized disease, in one of Africa’s most unforgiving neighbourhoods.
The Community Engagement Coordinator explained that, in their experience, the key was to make it clear, in every way, that the local communities were “much more than a source of trial participants”. The centre had to be seen as deeply invested in the well-being of the community. Relationships and bonds had to be formed which transcended the immediate medical needs of the participants. Youth engagement programmes had to be conceived and implemented.
Above all, and to preclude any possibility of negative “pushback” from the community after the study was already fully launched, there had to be prior diligent and prolonged counselling to ensure that when “informed consent” was given, it really was truly well informed. Hence an elaborate filtering procedure was needed to ensure that all who were enrolled knew what they were in for – including potential side effects.
“No short-cuts, when it comes to informed consent” has been the guiding principle for volunteer enrollment. And that is why the Desmond Tutu Emuvundleni Research Centre building is now being expanded to create room for more labs and other research facilities – when it could otherwise so easily have been burnt down.