Trans-border transfer of human biological materials in collaborative biobanking research: Perceptions and experiences of researchers in Uganda

Abstract

AbstractIntroductionThe study aimed to explore researchers’ perceptions and experiences on the transfer of human biological materials in international collaborative research.MethodsThis was a descriptive convergent parallel survey that randomly recruited 187 researchers involved in biobanking and/or genetics research. Data were collected using a self-administered tool that had both open and closed ended questions.ResultsMajority of respondents were male scientists (53.5%) with a mean research experience of 12.2 (SD 6.75) years. About 89% had ever worked in international collaborative research and 42% had ever participated in material transfer agreement (MTA) development. There were several areas of agreement in regard to the rights of local researchers and institution in collaborative biobanking research, and what details should be included in material transfer agreements. There was overwhelming support for collaborative partnership in biobanking research with 90.4% of researchers agreeing that local scientists should be involved in decisions making regarding the future use of samples. A majority (85.6%) opined that there should be fair sharing of research benefits with local researchers and populations or country from which the human biological materials were taken. Researchers felt that most MTAs tend to favour international collaborators. Several trust issues in the MTA development and implementation process were also highlighted and these included: lack of transparency and dishonesty of receiving scientists; lack of mechanisms to monitor the use of exported samples; ownership and intellectual property disputes; exploitation and inequitable sharing of research benefits; and authorship challenges. Several researchers seemed not to be conversant with the guidance provided by the Ugandan national ethics guidelines on the cross-border exchange of human biological specimens.ConclusionLocal researchers had a positive attitude towards the export of human biological materials in collaborative research. However, there were several governance and trust concerns. There is a need for collaborative partnership in biobanking research.