Abstract:
BACKGROUND: The use of biological samples in research raises a number of ethical issues in relation to consent,
storage, export, benefit sharing and re-use of samples. Participant perspectives have been explored in North
America and Europe, with only a few studies reported in Africa. The amount of research being conducted in Africa
is growing exponentially with volumes of biological samples being exported from the African continent. In order to
investigate the perspectives of African research participants, we conducted a study at research sites in the Western
Cape and Gauteng, South Africa.
METHODS: Data were collected using a semi-structured questionnaire that captured both quantitative and
qualitative information at 6 research sites in South Africa. Interviews were conducted in English and Afrikaans. Data
were analysed both quantitatively and qualitatively.
RESULTS: Our study indicates that while the majority of participants were supportive of providing samples for
research, serious concerns were voiced about future use, benefit sharing and export of samples. While researchers
view the provision of biosamples as a donation, participants believe that they still have ownership rights and are
therefore in favour of benefit sharing. Almost half of the participants expressed a desire to be re-contacted for
consent for future use of their samples. Interesting opinions were expressed with respect to export of samples.
CONCLUSIONS: Eliciting participant perspectives is an important part of community engagement in research
involving biological sample collection, export, storage and future use. A tiered consent process appears to be more
acceptable to participants in this study. Eliciting opinions of researchers and research ethics committee (REC)
members would contribute multiple perspectives. Further research is required to interrogate the concept of
ownership and the consent process in research involving biological samples.
