"It's my blood": ethical complexities in the use, storage and export of biological samples: perspectives from South African research participants.
"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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DOI：
10.1186/1472-6939-15-4
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发表时间：
2014-01-22
影响因子：
2.7
通讯作者：
Rossouw T
中科院分区：
文献类型：
--
作者：
Moodley K;Sibanda N;February K;Rossouw T
在研究中使用生物样本引发了许多与样本的同意、储存、出口、利益分享和再利用有关的伦理问题。北美和欧洲已经探讨了参与者的观点，但在非洲只报道了少数研究。随着非洲大陆出口的生物样本量不断增加，非洲正在进行的研究量呈指数级增长。为了调查非洲研究参与者的观点，我们在南非西开普省和豪登省的研究地点进行了一项研究。使用半结构化问卷收集数据，该问卷捕获了南非 6 个研究地点的定量和定性信息。采访以英语和南非荷兰语进行。对数据进行定量和定性分析。我们的研究表明，虽然大多数参与者支持提供研究样本，但他们对样本的未来使用、惠益分享和出口表示严重担忧。虽然研究人员将提供生物样本视为捐赠，但参与者认为他们仍然拥有所有权，因此赞成利益分享。近一半的参与者表示希望重新联系以征得其样本未来使用的同意。对于样品出口发表了有趣的意见。征求参与者的观点是社区参与涉及生物样本收集、出口、储存和未来使用的研究的重要组成部分。本研究的参与者似乎更容易接受分层同意流程。征求研究人员和研究伦理委员会 (REC) 成员的意见将提供多种观点。需要进一步研究来质疑涉及生物样本的研究中的所有权概念和同意过程。
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. 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. 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. 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.
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影响因子：
2.7
作者：
Moodley K;Myer L
通讯作者：
Myer L
影响因子：
2.7
作者：
Gibson E;Brazil K;Coughlin MD;Emerson C;Fournier F;Schwartz L;Szala-Meneok KV;Weisbaum KM;Willison DJ
通讯作者：
Willison DJ
影响因子：
24.3
作者：
Cambon-Thomsen, A.;Rial-Sebbag, E.;Knoppers, B. M.
通讯作者：
Knoppers, B. M.
影响因子：
--
作者：
Johnsson, Linus;Hansson, Mats G.;Helgesson, Gert
通讯作者：
Helgesson, Gert
影响因子：
3.5
作者：
Berg, K
通讯作者：
Berg, K