Ugandan scientists exporting research participant samples without consent – study

Bioethicists have expressed concern that some Ugandan volunteers involved in scientific research studies are not knowledgeable about the fact that their samples may be exported to other countries.

Prof Erisa Mwaka, a bioethicist based at Makerere University told journalists at a press conference that he conducted a survey and found that in some studies involving Ugandans that are ongoing elsewhere outside the country, material transfer agreements that are supposed to allow for the export of samples are never signed.

In the survey, Mwaka says they analyzed 3,298 protocols involving both local and international researchers and had been reviewed by Uganda National Council for Science and Technology (UNSCT). He found that while some 243 samples were exported, 126 were shared with foreign institutions but had no export certificates on file. 

This is despite the requirement by the government for these agreements to be signed for any form of export including blood, saliva, and other body products. Mwaka adds that in some instances where material transfer documents were signed, the content didn’t comply with proper guidelines.

For instance, he says where consent forms were signed, 48.6 per cent solicited blanket consent without details that while one is giving those samples for a particular study, the same samples will be stored and used for future research.

“This informed consent form must be in a language that somebody understands. That is why we translate them into local languages – Luganda, Lusoga, Runyankole. But the problem is translating some of these scientific terms into local languages is difficult. Like genetics, everybody calls it ndaga butonde but what’s ndaga butonde? Sickle cells, it was only recently that we got a name for sickle cells in Luganda called Nalubiri. But what does Nalubiri mean? But for us who come from Busoga, Nalubiri is a name…So you find that appropriate translation is a problem,” he said.

Mwaka says participants need to be furnished with all this information but worse they found, even the research assistants are not skilled enough to understand that such blanket consent is not acceptable internationally. When it came to genetic research, 50 per cent of the consent solicited was blanket.

Responding to these findings, Dr Moses Ochan, the vice chairperson of Makerere University research and ethics committee said there should sensitization of both the communities and researchers before any study takes off so that people can be fully aware of what to expect.

For him, research ethics committees should be doing more than reviewing documents presented to them and instead do actual monitoring of what exactly takes place in the field. However, scientists have since expressed the need for a review of the laws and regulations to match the latest advances in research.