Exploring perspectives of research ethics committee members on the governance of big data in sub-Saharan Africa
Interest in the governance of big data is growing exponentially. However, finding the right balance between making large volumes of data accessible, and safeguarding privacy, preventing data misuse, determining authorship and protecting intellectual property remain challenging. In sub-Saharan Afric...
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| Format: | Article |
| Language: | English |
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Academy of Science of South Africa
2023-05-01
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| Series: | South African Journal of Science |
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| Online Access: | https://sajs.co.za/article/view/14905 |
| _version_ | 1827937279108186112 |
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| author | Nezerith Cengiz Siti M. Kabanda Tonya M. Esterhuizen Keymanthri Moodley |
| author_facet | Nezerith Cengiz Siti M. Kabanda Tonya M. Esterhuizen Keymanthri Moodley |
| author_sort | Nezerith Cengiz |
| collection | DOAJ |
| description |
Interest in the governance of big data is growing exponentially. However, finding the right balance between making large volumes of data accessible, and safeguarding privacy, preventing data misuse, determining authorship and protecting intellectual property remain challenging. In sub-Saharan Africa (SSA), research ethics committees (RECs) play an important role in reviewing data-intense research protocols. However, this regulatory role must be embedded in a context of robust governance. There is currently a paucity of published literature on how big data are regulated in SSA and if the capacity to review protocols is sufficient. The aim of this study was to provide a broad overview of REC members’ awareness and perceptions of big data governance in SSA. A descriptive cross-sectional survey was conducted from April to July 2022. We invited 300 REC members to participate in our online survey via Research Electronic Data Capture (REDCap). A total of 140 REC members, representing 34 SSA countries, completed the online survey. Awareness of data governance laws, policies and guidelines was variable across the subcontinent. A quarter of respondents (25%) indicated that national regulations on the transborder flow of research data are inadequate. Institutional policies on research data protection were also regarded as being inadequate. Most respondents (64%) believed that they lacked experience in reviewing data-intense protocols. Data governance and regulation in SSA need to be strengthened at both national and institutional levels. There is a strong need for capacity development in the review of data-intense research protocols on the subcontinent.
Significance:
This is the first empirical survey in SSA in which awareness and perspectives of REC members have been explored specifically relating to the review of data-intense research protocols. Big data have raised new ethics and legal challenges, and this survey provides a broad overview of these challenges in SSA. Our study confirms that knowledge and awareness of legislative frameworks and ethics guidance in SSA vary considerably where big data are concerned. The research results could be useful for a range of stakeholders, including RECs, data scientists, researchers, research and academic institutions, government decisionmakers and artificial intelligence (AI) coders.
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| first_indexed | 2024-03-13T08:23:14Z |
| format | Article |
| id | doaj.art-e7b809aaeea34a5a9578909c73d4e92a |
| institution | Directory Open Access Journal |
| issn | 1996-7489 |
| language | English |
| last_indexed | 2024-03-13T08:23:14Z |
| publishDate | 2023-05-01 |
| publisher | Academy of Science of South Africa |
| record_format | Article |
| series | South African Journal of Science |
| spelling | doaj.art-e7b809aaeea34a5a9578909c73d4e92a2023-05-31T06:33:55ZengAcademy of Science of South AfricaSouth African Journal of Science1996-74892023-05-011195/610.17159/sajs.2023/14905Exploring perspectives of research ethics committee members on the governance of big data in sub-Saharan AfricaNezerith Cengiz0Siti M. Kabanda1Tonya M. Esterhuizen2Keymanthri Moodley3Centre for Medical Ethics and Law, Faculty of Medicine and Health Sciences, Stellenbosch University, Cape Town, South AfricaCentre for Medical Ethics and Law, Faculty of Medicine and Health Sciences, Stellenbosch University, Cape Town, South AfricaDivision of Epidemiology and Biostatistics, Faculty of Medicine and Health Sciences, Stellenbosch University, Cape Town, South AfricaCentre for Medical Ethics and Law, Faculty of Medicine and Health Sciences, Stellenbosch University, Cape Town, South Africa Interest in the governance of big data is growing exponentially. However, finding the right balance between making large volumes of data accessible, and safeguarding privacy, preventing data misuse, determining authorship and protecting intellectual property remain challenging. In sub-Saharan Africa (SSA), research ethics committees (RECs) play an important role in reviewing data-intense research protocols. However, this regulatory role must be embedded in a context of robust governance. There is currently a paucity of published literature on how big data are regulated in SSA and if the capacity to review protocols is sufficient. The aim of this study was to provide a broad overview of REC members’ awareness and perceptions of big data governance in SSA. A descriptive cross-sectional survey was conducted from April to July 2022. We invited 300 REC members to participate in our online survey via Research Electronic Data Capture (REDCap). A total of 140 REC members, representing 34 SSA countries, completed the online survey. Awareness of data governance laws, policies and guidelines was variable across the subcontinent. A quarter of respondents (25%) indicated that national regulations on the transborder flow of research data are inadequate. Institutional policies on research data protection were also regarded as being inadequate. Most respondents (64%) believed that they lacked experience in reviewing data-intense protocols. Data governance and regulation in SSA need to be strengthened at both national and institutional levels. There is a strong need for capacity development in the review of data-intense research protocols on the subcontinent. Significance: This is the first empirical survey in SSA in which awareness and perspectives of REC members have been explored specifically relating to the review of data-intense research protocols. Big data have raised new ethics and legal challenges, and this survey provides a broad overview of these challenges in SSA. Our study confirms that knowledge and awareness of legislative frameworks and ethics guidance in SSA vary considerably where big data are concerned. The research results could be useful for a range of stakeholders, including RECs, data scientists, researchers, research and academic institutions, government decisionmakers and artificial intelligence (AI) coders. https://sajs.co.za/article/view/14905big datadata governancedata regulationresearch ethics committeessub-Saharan Africa |
| spellingShingle | Nezerith Cengiz Siti M. Kabanda Tonya M. Esterhuizen Keymanthri Moodley Exploring perspectives of research ethics committee members on the governance of big data in sub-Saharan Africa South African Journal of Science big data data governance data regulation research ethics committees sub-Saharan Africa |
| title | Exploring perspectives of research ethics committee members on the governance of big data in sub-Saharan Africa |
| title_full | Exploring perspectives of research ethics committee members on the governance of big data in sub-Saharan Africa |
| title_fullStr | Exploring perspectives of research ethics committee members on the governance of big data in sub-Saharan Africa |
| title_full_unstemmed | Exploring perspectives of research ethics committee members on the governance of big data in sub-Saharan Africa |
| title_short | Exploring perspectives of research ethics committee members on the governance of big data in sub-Saharan Africa |
| title_sort | exploring perspectives of research ethics committee members on the governance of big data in sub saharan africa |
| topic | big data data governance data regulation research ethics committees sub-Saharan Africa |
| url | https://sajs.co.za/article/view/14905 |
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