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

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dc.contributor.authorMoodley, Keymanthri
dc.contributor.authorSibanda, Nomathemba
dc.contributor.authorFebruary, Kelsey
dc.contributor.authorRossouw, Theresa
dc.date.accessioned2014-04-29T13:51:28Z
dc.date.available2014-04-29T13:51:28Z
dc.date.issued2014-01
dc.descriptionPublication of this article was funded by the Stellenbosch University Open Access Fund.en_ZA
dc.descriptionPlease cite as follows :en_ZA
dc.descriptionMoodley, K., Sibanda, N., February, K. & Rossouw, T. 2014.“It’s my blood”: ethical complexities in the use, storage and export of biological samples: perspectives from South African research participants. BMC Medical Ethics, 15:4, doi:10.1186/1472-6939-15-4.en_ZA
dc.descriptionThe original publication is available at http://www.biomedcentral.com/bmcmedethics/en_ZA
dc.description.abstractBackground: 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.en_ZA
dc.description.sponsorshipStellenbosch Universityen_ZA
dc.description.versionPublishers' Versionen_ZA
dc.format.extent7 p.
dc.identifier.citationMoodley, K., Sibanda, N., February, K. & Rossouw, T. 2014.“It’s my blood”: ethical complexities in the use, storage and export of biological samples: perspectives from South African research participants. BMC Medical Ethics, 15:4, doi:10.1186/1472-6939-15-4.en_ZA
dc.identifier.issn1472-6939 (print)
dc.identifier.issn1472-6939 (online)
dc.identifier.otherdoi:10.1186/1472-6939-15-4
dc.identifier.urihttp://hdl.handle.net/10019.1/86809
dc.language.isoen_ZAen_ZA
dc.publisherBioMed Centralen_ZA
dc.rights.holderAuthors retain copyrighten_ZA
dc.subjectBiological specimens -- Moral and ethical aspectsen_ZA
dc.subjectBiological specimens -- Collection and preservationen_ZA
dc.subjectParticipatory researchen-ZA
dc.subjectBiological specimens -- Identificationen_ZA
dc.subjectParticipants -- Attitudesen_ZA
dc.titleIt’s my blood : ethical complexities in the use, storage and export of biological samples : perspectives from South African research participantsen_ZA
dc.typeArticleen_ZA
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