A scoping review of considerations and practices for benefit sharing in biobanking
| dc.contributor.author | Sudoi, Allan | |
| dc.contributor.author | De Vries, Jantina | |
| dc.contributor.author | Kamuya, Dorcas | |
| dc.date.accessioned | 2021-10-08T14:42:52Z | |
| dc.date.available | 2021-10-08T14:42:52Z | |
| dc.date.issued | 2021-07-27 | |
| dc.date.updated | 2021-08-01T03:14:53Z | |
| dc.description.abstract | Background Despite the rapid global growth of biobanking over the last few decades, and their potential for the advancement of health research, considerations specific to the sharing of benefits that accrue from biobanks have received little attention. Questions such as the types and range of benefits that can arise in biobanking, who should be entitled to those benefits, when they should be provided, by whom and in what form remain mostly unanswered. We conducted a scoping review to describe benefit sharing considerations and practices in biobanking in order to inform current and future policy and practice. Methods Drawing on the Arksey and O’Malley framework, we conducted a scoping review of the literature in three online databases (PubMed, Cochrane library, and Google Scholar). We extracted and charted data to capture general characteristics, definitions and examples of benefits and benefit sharing, justification for benefit sharing, challenges in benefit sharing, governance mechanisms as well as proposed benefit sharing mechanisms. Results 29 articles published between 1999 and 2020 met the inclusion criteria for the study. The articles included 5 empirical and 24 non-empirical studies. Only 12 articles discussed benefit sharing as a stand-alone subject, while the remaining 17 integrated a discussion of benefits as one issue amongst others. Major benefit sharing challenges in biobanking were found to be those associated with uncertainties around the future use of samples and in resultant benefits. Conclusion Most of the benefit sharing definitions and approaches currently in use for biobanking are similar to those used in health research. These approaches may not recognise the distinct features of biobanking, specifically relating to uncertainties associated with the sharing and re-use of samples. We therefore support approaches that allow decisions about benefit sharing to be made progressively once it is apparent who samples are to be shared with, the intended purpose and expected benefits. We also highlight gaps in key areas informing benefit sharing in biobanking and draw attention to the need for further empirical research. | en_US |
| dc.identifier.apacitation | Sudoi, A., De Vries, J., & Kamuya, D. (2021). A scoping review of considerations and practices for benefit sharing in biobanking. <i>BMC Medical Ethics</i>, 22(1), 102. http://hdl.handle.net/11427/35137 | en_ZA |
| dc.identifier.chicagocitation | Sudoi, Allan, Jantina De Vries, and Dorcas Kamuya "A scoping review of considerations and practices for benefit sharing in biobanking." <i>BMC Medical Ethics</i> 22, 1. (2021): 102. http://hdl.handle.net/11427/35137 | en_ZA |
| dc.identifier.citation | Sudoi, A., De Vries, J. & Kamuya, D. 2021. A scoping review of considerations and practices for benefit sharing in biobanking. <i>BMC Medical Ethics.</i> 22(1):102. http://hdl.handle.net/11427/35137 | en_ZA |
| dc.identifier.ris | TY - Journal Article AU - Sudoi, Allan AU - De Vries, Jantina AU - Kamuya, Dorcas AB - Background Despite the rapid global growth of biobanking over the last few decades, and their potential for the advancement of health research, considerations specific to the sharing of benefits that accrue from biobanks have received little attention. Questions such as the types and range of benefits that can arise in biobanking, who should be entitled to those benefits, when they should be provided, by whom and in what form remain mostly unanswered. We conducted a scoping review to describe benefit sharing considerations and practices in biobanking in order to inform current and future policy and practice. Methods Drawing on the Arksey and O’Malley framework, we conducted a scoping review of the literature in three online databases (PubMed, Cochrane library, and Google Scholar). We extracted and charted data to capture general characteristics, definitions and examples of benefits and benefit sharing, justification for benefit sharing, challenges in benefit sharing, governance mechanisms as well as proposed benefit sharing mechanisms. Results 29 articles published between 1999 and 2020 met the inclusion criteria for the study. The articles included 5 empirical and 24 non-empirical studies. Only 12 articles discussed benefit sharing as a stand-alone subject, while the remaining 17 integrated a discussion of benefits as one issue amongst others. Major benefit sharing challenges in biobanking were found to be those associated with uncertainties around the future use of samples and in resultant benefits. Conclusion Most of the benefit sharing definitions and approaches currently in use for biobanking are similar to those used in health research. These approaches may not recognise the distinct features of biobanking, specifically relating to uncertainties associated with the sharing and re-use of samples. We therefore support approaches that allow decisions about benefit sharing to be made progressively once it is apparent who samples are to be shared with, the intended purpose and expected benefits. We also highlight gaps in key areas informing benefit sharing in biobanking and draw attention to the need for further empirical research. DA - 2021-07-27 DB - OpenUCT DP - University of Cape Town IS - 1 J1 - BMC Medical Ethics KW - Benefits KW - Benefit sharing KW - Biobanking KW - Biobanks KW - Ethics KW - Sample sharing LK - https://open.uct.ac.za PY - 2021 T1 - A scoping review of considerations and practices for benefit sharing in biobanking TI - A scoping review of considerations and practices for benefit sharing in biobanking UR - http://hdl.handle.net/11427/35137 ER - | en_ZA |
| dc.identifier.uri | https://doi.org/10.1186/s12910-021-00671-x | |
| dc.identifier.uri | http://hdl.handle.net/11427/35137 | |
| dc.identifier.vancouvercitation | Sudoi A, De Vries J, Kamuya D. A scoping review of considerations and practices for benefit sharing in biobanking. BMC Medical Ethics. 2021;22(1):102. http://hdl.handle.net/11427/35137. | en_ZA |
| dc.language.iso | en | en_US |
| dc.language.rfc3066 | en | |
| dc.publisher.department | Department of Medicine | en_US |
| dc.publisher.faculty | Faculty of Health Sciences | en_US |
| dc.rights.holder | The Author(s) | |
| dc.rights.uri | http://creativecommons.org/licenses/by/4.0/ | en_US |
| dc.source | BMC Medical Ethics | en_US |
| dc.source.journalissue | 1 | en_US |
| dc.source.journalvolume | 22 | en_US |
| dc.source.pagination | 102 | en_US |
| dc.source.uri | https://bmcmedethics.biomedcentral.com/ | |
| dc.subject | Benefits | en_US |
| dc.subject | Benefit sharing | en_US |
| dc.subject | Biobanking | en_US |
| dc.subject | Biobanks | en_US |
| dc.subject | Ethics | en_US |
| dc.subject | Sample sharing | en_US |
| dc.title | A scoping review of considerations and practices for benefit sharing in biobanking | en_US |
| dc.type | Journal Article | en_US |