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Open Access Research article

“It’s my blood”: ethical complexities in the use, storage and export of biological samples: perspectives from South African research participants

Keymanthri Moodley1*, Nomathemba Sibanda2, Kelsey February1 and Theresa Rossouw3

Author Affiliations

1 Centre for Medical Ethics and Law, Department of Medicine, Faculty of Health Sciences, Stellenbosch University, Stellenbosch, South Africa

2 School of Health Systems and Public Health, Faculty of Health Sciences, University of Pretoria, Pretoria, South Africa

3 Departments of Family Medicine and Immunology, Faculty of Health Sciences, University of Pretoria, Pretoria, South Africa

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BMC Medical Ethics 2014, 15:4  doi:10.1186/1472-6939-15-4

Published: 22 January 2014

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.