Scientists Exporting Participants’ Samples Without Consent – study

Bioethicists have expressed concern that volunteers in scientific studies are not thoroughly informed about the risk involved in some research and the fact that their samples will be used for future studies.

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 this survey, Mwaka says they analyzed 3298 protocols involving both local and international researchers but had been reviewed by Uganda National Council for Science and Technology (UNSCT). He found that while some two hundred and forty-three samples were exported, one hundred and eighty-six were shared with foreign institutions but had no export certificate 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% 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.

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% of the consent solicited was blanket.

Responding to these findings, Dr. Moses Ochan, the Vice Chairperson of the 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.

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