Abstract
BackgroundThe 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.MethodsData 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.ResultsOur 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.ConclusionsEliciting 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.
Highlights
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
Our study aimed to provide an exploration into these issues, seeking to qualitatively explore the views of research participants on sample storage, export and future use
In total 200 semistructured questionnaires were completed by research assistants during interviews in participants’ language of choice – with data recorded in English
Summary
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. 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. Research Ethics Committees (RECs) globally have a mandate to protect research participant interests such as confidentiality, ownership, export, storage and secondary use of samples (individual good) with specific consent, regulations. Consideration of best practices for use of biospecimens should begin with an exploration of participant expectations [10]. This is an important first step in discerning the complexity of the debate. In South Africa, such a process of public engagement has not occurred
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