"It's for a good cause, isn't it?" - Exploring views of South African TB research participants on sample storage and re-use

 

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dc.contributor.author van Schalkwyk, Gerrit en_ZA
dc.contributor.author de Vries, Jantina en_ZA
dc.contributor.author Moodley, Keymanthri en_ZA
dc.date.accessioned 2015-11-23T11:44:10Z
dc.date.available 2015-11-23T11:44:10Z
dc.date.issued 2012 en_ZA
dc.identifier.citation Van Schalkwyk, G., De Vries, J., & Moodley, K. (2012). It’s for a good cause, isn’t it?”–exploring views of South African TB research participants on sample storage and re-use. BMC Med Ethics, 13, 19. en_ZA
dc.identifier.uri http://hdl.handle.net/11427/15241
dc.identifier.uri http://dx.doi.org/10.1186/1472-6939-13-19
dc.description.abstract BACKGROUND: The banking of biological samples raises a number of ethical issues in relation to the storage, export and re-use of samples. Whilst there is a growing body of literature exploring participant perspectives in North America and Europe, hardly any studies have been reported in Africa. This is problematic in particular in light of the growing amount of research taking place in Africa, and with the rise of biobanking practices also on the African continent. In order to investigate the perspectives of African research participants, we conducted a study with research participants in a TB study in the Western Cape, South Africa. METHODS: Semi-structured interviews were conducted using an interview guide which drew on the most prominent themes expressed in current literature on sample storage, re-use and exportation. Interviews were conducted in Afrikaans and subsequently translated into English by the same interviewer. Interviews were transcribed verbatim and analysed qualitatively. RESULTS: The results of our study indicate that the majority of participants were supportive of giving one-time consent to the storage and re-use of their samples. The concept of research being for a "good cause" was a central prerequisite. Additionally, a significant minority requested that they be re-contacted if a future use was not stipulated on the original consent. There was also considerable variation in how participants understood the concept of a 'good cause', with participants describing three distinct categories of research, of which two were generally thought to constitute 'good cause' research. Research that was for-profit was considered to fall outside the spectrum of 'good cause' research. Participants displayed confidence in the abilities of the researchers to make future decisions regarding sample use, but seemed unaware of the role of ethics committees in either this process or more generally. CONCLUSIONS: Participants expressed a wide and complex range of views about issues of sample storage and re-use, and they showed a great deal of trust in researchers. Participants' willingness to have their samples stored and re-used is consistent with findings from existing studies. However, in contrast to existing literature, participants were generally not in favour of for-profit research. Further research needs to be done to explore these ideas in other communities, both in South Africa and other countries. en_ZA
dc.language.iso eng en_ZA
dc.publisher BioMed Central Ltd en_ZA
dc.rights This is an Open Access article distributed under the terms of the Creative Commons Attribution License en_ZA
dc.rights.uri http://creativecommons.org/licenses/by/2.0 en_ZA
dc.source BMC Medical Ethics en_ZA
dc.source.uri http://www.biomedcentral.com/bmcmedethics/ en_ZA
dc.subject.other biological samples en_ZA
dc.subject.other ethical issues en_ZA
dc.subject.other biological samples bank, biological samples re-use en_ZA
dc.title "It's for a good cause, isn't it?" - Exploring views of South African TB research participants on sample storage and re-use en_ZA
dc.type Journal Article en_ZA
dc.rights.holder 2012 van Schalkwyk et al.; licensee BioMed Central Ltd. en_ZA
uct.type.publication Research en_ZA
uct.type.resource Article en_ZA
dc.publisher.institution University of Cape Town
dc.publisher.faculty Faculty of Health Sciences en_ZA
dc.publisher.department Institute of Infectious Disease and Molecular Medicine en_ZA
uct.type.filetype Text
uct.type.filetype Image
dc.identifier.apacitation van Schalkwyk, G., de Vries, J., & Moodley, K. (2012). "It's for a good cause, isn't it?" - Exploring views of South African TB research participants on sample storage and re-use. <i>BMC Medical Ethics</i>, http://hdl.handle.net/11427/15241 en_ZA
dc.identifier.chicagocitation van Schalkwyk, Gerrit, Jantina de Vries, and Keymanthri Moodley ""It's for a good cause, isn't it?" - Exploring views of South African TB research participants on sample storage and re-use." <i>BMC Medical Ethics</i> (2012) http://hdl.handle.net/11427/15241 en_ZA
dc.identifier.vancouvercitation van Schalkwyk G, de Vries J, Moodley K. "It's for a good cause, isn't it?" - Exploring views of South African TB research participants on sample storage and re-use. BMC Medical Ethics. 2012; http://hdl.handle.net/11427/15241. en_ZA
dc.identifier.ris TY - Journal Article AU - van Schalkwyk, Gerrit AU - de Vries, Jantina AU - Moodley, Keymanthri AB - BACKGROUND: The banking of biological samples raises a number of ethical issues in relation to the storage, export and re-use of samples. Whilst there is a growing body of literature exploring participant perspectives in North America and Europe, hardly any studies have been reported in Africa. This is problematic in particular in light of the growing amount of research taking place in Africa, and with the rise of biobanking practices also on the African continent. In order to investigate the perspectives of African research participants, we conducted a study with research participants in a TB study in the Western Cape, South Africa. METHODS: Semi-structured interviews were conducted using an interview guide which drew on the most prominent themes expressed in current literature on sample storage, re-use and exportation. Interviews were conducted in Afrikaans and subsequently translated into English by the same interviewer. Interviews were transcribed verbatim and analysed qualitatively. RESULTS: The results of our study indicate that the majority of participants were supportive of giving one-time consent to the storage and re-use of their samples. The concept of research being for a "good cause" was a central prerequisite. Additionally, a significant minority requested that they be re-contacted if a future use was not stipulated on the original consent. There was also considerable variation in how participants understood the concept of a 'good cause', with participants describing three distinct categories of research, of which two were generally thought to constitute 'good cause' research. Research that was for-profit was considered to fall outside the spectrum of 'good cause' research. Participants displayed confidence in the abilities of the researchers to make future decisions regarding sample use, but seemed unaware of the role of ethics committees in either this process or more generally. CONCLUSIONS: Participants expressed a wide and complex range of views about issues of sample storage and re-use, and they showed a great deal of trust in researchers. Participants' willingness to have their samples stored and re-used is consistent with findings from existing studies. However, in contrast to existing literature, participants were generally not in favour of for-profit research. Further research needs to be done to explore these ideas in other communities, both in South Africa and other countries. DA - 2012 DB - OpenUCT DO - 10.1186/1472-6939-13-19 DP - University of Cape Town J1 - BMC Medical Ethics LK - https://open.uct.ac.za PB - University of Cape Town PY - 2012 T1 - "It's for a good cause, isn't it?" - Exploring views of South African TB research participants on sample storage and re-use TI - "It's for a good cause, isn't it?" - Exploring views of South African TB research participants on sample storage and re-use UR - http://hdl.handle.net/11427/15241 ER - en_ZA


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