Skip to main content
Have a personal or library account? Click to login
Navigating Gaps in Governance and Capacity for Equitable and Responsible Data Sharing in Health Research in Sub-Saharan Africa: A Literature Review Cover

Navigating Gaps in Governance and Capacity for Equitable and Responsible Data Sharing in Health Research in Sub-Saharan Africa: A Literature Review

Open Access
|Aug 2026

References

  1. Adebisi, Y.A., Rabe, A. and Lucero-Prisno III, D.E. (2021) ‘COVID-19 surveillance systems in African countries’, Health Promotion Perspectives, 11(4), pp. 382392. Available at: 10.34172/hpp.2021.49
  2. African Union. (Malabo Convention, 2014) African Union Convention on Cyber Security and Personal Data Protection. Available at: https://au.int/sites/default/files/treaties/29560-treaty-0048_-_african_union_convention_on_cyber_security_and_personal_data_protection_e.pdf (Accessed: 7 April 2026).
  3. African Union. (2023) African Union Health Information Exchange Guidelines and Standards (preliminary edition). Available at: https://africacdc.org/download/african-union-health-information-exchange-guidelines-and-standards/ (Accessed: 7 April 2026).
  4. African Union. (2026) List of countries that have signed, ratified/acceded to the African Union Convention on Cyber Security and Personal Data Protection. Available at: https://au.int/sites/default/files/treaties/29560-sl-AFRICAN_UNION_CONVENTION_ON_CYBER_SECURITY_AND_PERSONAL_DATA_PROTECTION_0.pdf (Accessed: 17 July 2026).
  5. Akpa-Inyang, F. and Chima, S.C. (2021) ‘South African traditional values and beliefs regarding informed consent and limitations of the principle of respect for autonomy in African communities: A cross-cultural qualitative study’, BMC Med Ethics, 22(111), pp. 117. Available at: 10.1186/s12910-021-00678-4
  6. Akintola, S.O. (2018) ‘Legal implications of data sharing in biobanking research in low-income settings: The Nigerian experience’, South African Journal of Bioethics and Law, 11(1), pp. 1519. Available at: 10.7196/SAJBL.2018.v11i1.00601
  7. Anane-Sarpong, E., Wangmo, T. and Tanner, M. (2020) ‘Ethical principles for promoting health research data sharing with sub-Saharan Africa’, Developing World Bioethics, 20(2), pp. 8695. Available at: 10.1111/dewb.12233
  8. Babalola, O. (2023) ‘Data protection legal regime and data governance in Africa: An overview’, in B. Ndemo, N. Ndung’u, S. Odhiambo and A. Shimeles (eds.) Data governance and policy in Africa: Information technology and global governance. Cham: Palgrave Macmillan. pp. 7196. Available at: 10.1007/978-3-031-24498-8_4
  9. Bananeza, R., Uwamahoro, J., Basingize, A, et al. (2025) ‘Revolutionizing digital health in Rwanda: Progress toward universal health coverage’, Journal of Indian Physician Associates, 1(1). Available at: https://digitalshowcase.lynchburg.edu/jipa/vol1/iss1/4
  10. Bangani, S. and Moyo, M. (2019) ‘Data sharing practices among researchers at South African universities’, Data Science Journal, 18(28), pp. 114. Available at: 10.5334/dsj-2019-028
  11. Bezuidenhout, L. (2019) ‘To share or not to share: Incentivizing data sharing in life science communities’, Developing World Bioethics, 19(1), pp. 1824. Available at: 10.1111/dewb.12183
  12. Bezuidenhout, L. and Chakauya, E. (2018) ‘Hidden concerns of sharing research data by low/middle-income country scientists’, Global Bioethics, 29(1), pp. 3954. Available at: 10.1080/11287462.2018.1441780
  13. Brand, D., Singh, J.A, McKay, A.G.N., Cengiz, N. and Moodley, K. (2022) ‘Data sharing governance in sub-Saharan Africa during public health emergencies: Gaps and guidance’, South African Journal of Science, 118(11/12), pp. 16. Available at: 10.17159/sajs.2022/13892
  14. Brown, Q., Chabilall, J, Cengiz, N. and Moodley, K. (2024) ‘Trust as moral currency: Perspectives of health researchers in sub-Saharan Africa on strategies to promote equitable data sharing’, PLOS Digital Health, 3(9). Available at: 10.1371/journal.pdig.0000551
  15. Bull, S., Cheah, P.Y., Denny, S. Jao, I., Marsh, V., Merson, L., More, N.S., Nhan, L.N.T., Osrin, D., Tangseefa, D., Wassenaar, D. and Parker, M. (2015) ‘Best practices for ethical sharing of individual-level health research data from low- and middle-income settings’, Journal of Empirical Research on Human Research Ethics, 10(3), pp. 302313. Available at: 10.1177/1556264615594606
  16. Cengiz, N., Kabanda, S.M. and Moodley, K. (2024) ‘Cross-border data sharing through the lens of research ethics committee members in sub-Saharan Africa’, PLOS One, 19(5), p. e0303828. Available at: 10.1371/journal.pone.0303828
  17. Collins, A., Hamza, O., Eweje, A. and Babatunde, G.O. (2024) ‘Challenges and solutions in data governance and privacy: A conceptual model for telecom and business intelligence systems’, Telecom and Business Intelligence Journal, 9(3), pp. 110125. Available at: 10.54660/.IJMRGE.2024.5.1.1064-1081
  18. De Montjoye, Y.A., Hidalgo, C.A., Verleysen, M. and Blondel, V.D. (2013) ‘Unique in the Crowd: The privacy bounds of human mobility’, Scientific Reports, 3(3), pp. 15. Available at: 10.1038/srep01376
  19. Edelstein, M., Lee, M.L., Herten-Crabb, A., Heymann, D.L. and Harper, D.R. (2018) ‘Strengthening global public health surveillance through data and benefit sharing’, Emerging Infectious Diseases, 24(7), pp. 13241330. Available at: https://wwwnc.cdc.gov/eid/article/24/7/15-1830_article
  20. Edgcumbe, A. and Thaldar, D. (2025) ‘Encore, encore! – Secondary use of health data for research: A practical guide to POPIA’, South African Journal of Bioethics & Law, 18(3), pp. 99105. Available at: 10.7196/SAJBL.2025.v18i3.3350
  21. Eke, D., Ochang, P., Adimula, A., Borokini, F., Akintoye, S., Oloyede, R., Sorborikor, L., Adeyeye, M., Wale-Oshinowo, B. and Ogundele, T. (2022) Responsible data governance in Africa: Institutional gaps and capacity needs. Centre for the Study of African Economies (CSEA). Available at: https://cseaafrica.org/images/posts/8194277452151253.pdf (Accessed: 13 April 2026).
  22. Ekong, I., Chukwu, E. and Chukwu, M. (2020) ‘COVID-19 mobile positioning data contact tracing and patient privacy regulations: Exploratory search of global response strategies and the use of digital tools in Nigeria’, JMIR MHealth and UHealth, 8(4), p. e19139. Available at: 10.2196/19139
  23. Fawole, O.I., Bello, S., Adebowale, A.S., Bamgboye, E.A., Salawu, M.M., Afolabi, R.F., Dairo, M.D., Namale, A., Kiwanuka, S., Monje, F., Namuhani, N., Kabwama, S., Kizito, S., Ndejjo, R., Seck, I., Diallo, I., Makhtar, M., Leye, M., Ndiaye, Y., Fall, M., Bassoum, O., Mapatano, M.A., Bosonkie, M., Egbende, L., Lazenby, S., Wang, W., Liu, A., Bartlein, R., Sambisa, W. and Wanyenze, R. (2023) ‘COVID-19 surveillance in Democratic Republic of Congo, Nigeria, Senegal and Uganda: Strengths, weaknesses and key lessons’, BMC Public Health, 23(835), pp. 115. Available at: 10.1186/s12889-023-15708-6
  24. Fernando, B., King, M. and Sumathipala, A. (2019) ‘Advancing good governance in data sharing and biobanking-international aspects’, Wellcome Open Research, 4(184), pp. 111. Available at: 10.12688/wellcomeopenres.15540.1
  25. Gilbert, J., Adekanmbi, O. and Harrison, C. (2021) ‘Using mobile big data to support emergency preparedness and address economically vulnerable communities during the COVID-19 pandemic in Nigeria’, Data & Policy, 3, p. e21. Available at: 10.1017/dap.2021.12
  26. Global Data Healthcare. (2024) Clinical trial landscape for Sub-Saharan Africa. Available at: https://www.clinicaltrialsarena.com/analyst-comment/clinical-trial-landscape-for-sub-saharan-africa/?cf-view (Accessed: 13 April 2026).
  27. Gomes, D.G.E., Pottier, P., Crystal-Ornelas, R., Hudgins, E.J., Foroughirad, V., Sánchez-Reyes, L.L., Turba, R., Martinez, P.A., Moreau, D., Bertram, M.G., Smout, C.A. and Gaynor, K.M. (2022) ‘Why don’t we share data and code? Perceived barriers and benefits to public archiving practices’, Proceedings of the Royal Society B, 289(1987), pp. 111. Available at: 10.1098/rspb.2022.1113
  28. Izugbara, C.O., Kabiru, C.W., Amendah, D., Dimbuene, Z.T., Donfouet, H.P.P., Atake, E-H., Ingabire, M-G., Maluka, S., Mumah, J.N., Mwau, M., Ndinya, M., Ngure, K., Sidze, E.M., Sossa, C., Soura, A. and Ezeh, A.C. (2017) ‘“It takes more than a fellowship program”: Reflections on capacity strengthening for health systems research in sub-Saharan Africa’, BMC Health Services Research, 17(Suppl 2), p. 696. Available at: 10.1186/s12913-017-2638-9
  29. Jao, I., Kombe, F., Mwalukore, S., Bull, S., Parker, M., Kamuya, D., Molyneux, S. and March, V. (2015) ‘Research stakeholders’ views on benefits and challenges for public health research data sharing in Kenya: The importance of trust and social relations’, PLOS One, 10(9), pp. 118. Available at: https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0135545
  30. Kabanda, S.M., Cengiz, N., Rajaratnam, K., Watson, B.W., Brown, Q., Esterhuizen, T.M. and Moodley, K. (2023) ‘Data sharing and data governance in sub-Saharan Africa: Perspectives from researchers and scientists engaged in data-intensive research’, South African Journal of Science, 119(5/6), pp. 112. Available at: 10.17159/sajs.2023/15129
  31. Kenya. (2019). Data Protection Act, No. 24 of 2019. Nairobi: Government of Kenya. Available at: https://www.kentrade.go.ke/wp-content/uploads/2022/09/Data-Protection-Act-1.pdf (accessed 14 April 2026).
  32. Klaaren, J., Breckenridge, K., Cachalia, F., Fonn, S. and Veller, M. (2020) ‘South Africa’s COVID-19 tracing database: Risks and rewards of which doctors should be aware’, South African Medical Journal, 110(7), pp. 617620. Available at: 10.7196/SAMJ.2020.V110I7.14852A
  33. Mabona, M., Zwane, T., Raman, J., Kuonza, L., Mhlongo, B. and Phafane, P. (2024) ‘Evaluation of the malaria case surveillance system in KwaZulu-Natal Province, South Africa, 2022: A focus on DHIS2’, Malaria Journal, 23(47), pp. 113. Available at: 10.1186/s12936-024-04873-7
  34. Mamuye, A.L., Yilma, T.M., Abdulwahab, A., Broomhead, S., Zondo, P., Kyeng, M., Maeda, J., Abdulaziz, M., Wuhib, T. and Tilahun, B.C. (2022) ‘Health information exchange policy and standards for digital health systems in Africa: A systematic review’, PLOS Digit Health, 1(10), e0000118. Available at: 10.1371/journal.pdig.0000118
  35. Ministry of Health Rwanda. (2018) The National Digital Health Strategic Plan. Kigali, Rwanda 2018.
  36. National Institute of Statistics of Rwanda (NISR). (2025) ‘National Data Governance Framework’, NISR. Available at: https://statistics.gov.rw/sites/default/files/documents/2025-10/National%20_Data_Governance_Framework_2025.pdf (accessed 13 March 2026).
  37. Ndegwa, L., Ngere, P., Makayotto, L., Patel, N.N., Nzisa, L., Otieno, N., Osoro, E., Oreri, E., Kiptoo, E., Maigua, S., Crawley, A., Clara, A.W., S. Arunmozhi Balajee, S.A., Munyua, P. and Herman-Roloff, A. (2023) ‘Kenya’s experience implementing event-based surveillance during the COVID-19 pandemic’, BMJ Global Health, 8(12), pp. 18. Available at: https://gh.bmj.com/content/8/12/e013736
  38. Ndembi, N., Mekonen, T.T., Folayan, M.O., Dereje, N., Kruger, A., Fokam, J., Temfack, E., Raji, T., Nachega, J., Boum II, Y., Crowell, T.A., Ngongo, A.N., Mboup, S., Ntoumi, F., Loots, G., Makanga, M., Sow, S., Karim, S.A. and Nkengasong, J. (2024) ‘Strengthening and expanding capacities in clinical trials: Advancing pandemic prevention, preparedness and response in Africa’, Nature Communications, 8662(15), pp. 16. Available at: 10.1038/s41467-024-53126-3
  39. Nienaber McKay, A.G., Brand, D., Botes, M., Cengiz, N. and Swart, M. (2024) ‘The regulation of health data sharing in Africa: A comparative study’, J Law Biosci, 11(1), pp. 122. Available at: 10.1093/jlb/lsad035
  40. Nigeria. (2019). Nigerian Data Protection Regulation, 2019. Abuja: National Information Technology Development Agency. Available at: https://nitda.gov.ng/wp-content/uploads/2020/11/NigeriaDataProtectionRegulation11.pdf (accessed 9 April 2026).
  41. Nigeria. (2023). Nigeria Data Protection Act, 2023. Abuja: Government of Nigeria. Available at: https://cert.gov.ng/ngcert/resources/Nigeria_Data_Protection_Act_2023.pdf (accessed 9 April 2026).
  42. Nyirenda, T., Bockarie, M., Machingaidze, S., Nderu, M., Singh, M., Fakier, N., Habarugira, J-M., Beattie, P., Pandya, L., Jajkowicz, D., Yazdanpanah, Y., Hankins, C. and Makanga, M. (2021) ‘Strengthening capacity for clinical research in sub-Saharan Africa: Partnerships and networks’, International Journal of Infectious Diseases, 110, pp. 5461. Available at: https://www.ijidonline.com/article/S1201-9712(21)00549-X/fulltext
  43. Obiora, O.L., Olivier, B., Shead, D.A. and Withers, A. (2022) ‘Data sharing practices of health researchers in Africa: A scoping review protocol’, JBI Evidence Synthesis, 20(2), pp. 681688. Available at: 10.11124/JBIES-20-00502
  44. O’Brien, N. Hashiguchi, T.C.O. Veerappan, M. and Gizaw, M. (eds.) (2025) Addressing Public Governance Challenges in Digital Health: Insights from Country Experiences. Joint Learning Network for Universal Health Coverage. Available at: 10.1596/44546
  45. Office of the Data Protection Commissioner (ODPC) Kenya. (2023) ‘Guidance Note for the Communication Sector’, ODPC. Available at: https://www.odpc.go.ke/wp-content/uploads/2024/02/ODPC-Guidance-Note-for-the-Communication-Sector.pdf (accessed 9 April 2026).
  46. Office of the Data Protection Commissioner (ODPC) Kenya. (2025) ‘Guidance notes – Processing for Research Purpose’, ODPC. Available at: https://www.odpc.go.ke/wp-content/uploads/2025/11/ODPC-%E2%80%93-GUIDANCE-NOTES-Processing-for-Research-Purpose.pdf (accessed 9 April 2026).
  47. Okafor, I.A., Mbagwu, S.I., Chia, T., Hasim, Z., Udokanma, E.E. and Chandran, K. (2022) ‘Institutionalizing open science in Africa: Limitations and prospects’, Frontiers in Research Metrics and Analytics, 7, pp. 116. Available at: 10.3389/frma.2022.855198
  48. One Health High-Level Expert Panel (OHHLEP), Hayman, D.T.S., Adisasmito, W.B., Almuhairi, S., Behravesh, C.B., Bilivogui, P., Bukachi, S.A., Casas, N., Becerra, N.C., Charron, D.F., Chaudhary, A., Zanella, J.R.C., Cunningham, A.A., Dar, O., Debnath, N., Dungu, B., Farag, E., Gao, G.F., Khaitsa, M., Machalaba, C. and Mackenzie, J.S. (2023) ‘Developing One Health Surveillance Systems’, One Health, 17(2023), pp. 19. Available at: 10.1016/j.onehlt.2023.100617
  49. Organisation for Economic Co-operation and Development (OECD). (2022) ‘Why data governance matters’, OECD. Available at: https://www.oecd.org/en/topics/sub-issues/data-governance.html (accessed 15 April 2026).
  50. Pisani, E., Ghataure, A. and Merson, L. (2018) ‘Data sharing in public health emergencies: A study of current policies, practices and infrastructure supporting the sharing of data to prevent and respond to epidemic and pandemic threats’, Wellcome Trust. Available at: https://wellcome.figshare.com/articles/journal_contribution/Data_sharing_in_public_health_emergencies_A_study_of_current_policies_practices_and_infrastructure_supporting_the_sharing_of_data_to_prevent_and_respond_to_epidemic_and_pandemic_threats/5897608 (accessed 22 April 2026).
  51. Polin, K., Shuftan, N., Webb, W., Opoku, D., Droti, B. and Quentin, W. (2024) ‘Data for health system comparison and assessment in the African Region: A review of 63 indicators available in international databases’, Journal of Global Health, 14, pp. 115. Available at: 10.7189/jogh.14.04118
  52. Raza, S., Ma’ani, R. and Dhillon, D. (2018) Unlocking MNO data to enhance public services and humanitarian efforts. Digital Impact Alliance. Available at: https://dial.global/wp-content/uploads/2018/02/DIAL_D4D-Report_2018.pdf (Accessed: 9 April 2026).
  53. Rennie, S., Atuire, C., Mtande, T., Jaoko, W., Litewka, S., Juengst, E. and Moodley, K. (2023) ‘Public health research using cell phone derived mobility data in sub-Saharan Africa’, South African Journal of Science, 119(5/6), pp. 17. Available at: 10.17159/sajs.2023/14777
  54. Rwanda. (2021) Law No. 058/2021 of 13/10/2021 Relating to the Protection of Personal Data and Privacy. Kigali: Government of Rwanda. Available at: https://www.risa.gov.rw/fileadmin/user_upload/RISA/Publications/2.Laws/Law_relating_to_the_protection_of_personal_data_and_privacy.pdf (Accessed: 14 April 2026).
  55. Schildkraut, J.A., Sloan, D. and Boeree, M.J. (2024): ‘If you want to go far, go together: Standardisation and data sharing in TB drug development’, The International Journal of Tuberculosis and Lung Disease, 28(1), pp. 35. Available at: 10.5588/ijtld.23.0532
  56. Silva, D.S. and Smith, M.J. (2023) ‘Data sharing during pandemics: Reciprocity, solidarity, and limits to obligations’, Journal of Bioethical Inquiry, 20(4), pp. 667672. Available at: 10.1007/s11673-023-10251-w
  57. Skelly, L. and Chiware, E.R.T. (2022) ‘African researchers do not think differently about Open Data’, Frontiers in Research Metrics and Analytics, 7, pp. 17. Available at: 10.3389/frma.2022.950212
  58. Soucie, J.M. (2012) ‘Public health surveillance and data collection: General principles and impact on hemophilia care’, Hematology, 17(1), pp. 144146. Available at: 10.1179/102453312X13336169156537
  59. South Africa. (2013) Protection of Personal Information Act 4 of 2013. Pretoria: Government of South Africa. Available at: https://www.gov.za/sites/default/files/gcis_document/201409/3706726-11act4of2013protectionofpersonalinforcorrect.pdf (Accessed: 9 April 2026).
  60. South Africa. (2021) National Normative Standards Framework for Interoperability in Digital Health. Available at: https://www.gov.za/sites/default/files/gcis_document/202210/47337gon2667.pdf (Accessed: 7 April 2026).
  61. Staunton, C., Edgcumbe, A., Abdulrauf, L., Gooden, A., Ogendi, P. and Thaldar, D. (2025) ‘Cross-border data sharing for research in Africa: An analysis of the data protection and research ethics requirements in 12 jurisdictions’, Journal of Law and Biosciences, 12(1), pp. 133. Available at: 10.1093/jlb/lsaf002
  62. Tenopir, C., Allard, S., Douglass, K., Aydinoglu, A.U., Wu, L., Read, E., Manoff, M. and Frame, M. (2011) ‘Data sharing by scientists: Practices and perceptions’, PLOS One, 6(6), p. e21101. Available at: 10.1371/journal.pone.0021101
  63. Townsend, B.A. (2022) ‘The lawful sharing of health research data in South Africa and beyond’, Information & Communications Technology Law, 31(1), pp. 1734. Available at: 10.1080/13600834.2021.1918905
  64. Transform Health. (2024a) Health Data Governance Legislative and Regulatory Landscape Review: Kenya Country Summary Report, Basel. Available at: https://healthdatagovernance.org/wp-content/uploads/2025/01/Country-Report-Kenya.pdf (Accessed: 9 April 2026).
  65. Transform Health. (2024b) Health Data Governance Legislative and Regulatory Landscape Review: Rwanda Country Summary Report, Basel. Available at: https://healthdatagovernance.org/wp-content/uploads/2025/01/Country-Report-Rwanda.pdf (Accessed: 20 April 2026).
  66. Transform Health. (2024c) Health Data Governance Legislative and Regulatory Landscape Review: South Africa Summary Report, Basel. Available at: https://healthdatagovernance.org/wp-content/uploads/2025/01/Country-Report-South-Africa.pdf (Accessed: 20 April 2026).
  67. Viljoen, I.M., de Villebois Castelyn, C., Pope, A., Botes, M. and Pepper, M.S. (2020) ‘Contact tracing during the COVID-19 pandemic: Protection of personal information in South Africa’, South African Journal of Bioethics Law, 13(1), pp. 16. Available at: 10.7196/SAJBL.2020.v13i1.718
  68. Waithira, N., Mutinda, B. and Cheah, P.Y. (2019) ‘Data management and sharing policy: The first step towards promoting data sharing’, BMC Medicine, 17(80), pp. 15. Available at: 10.1186/s12916-019-1315-8
  69. Wesolowski, A., Eagle, N., Tatem, A.J., Smith, D.L., Noor, A.M., Snow, R.W. and Buckee, C.O. (2012) ‘Quantifying the impact of human mobility on malaria’, Science, 338(6104), pp. 267270. Available at: 10.1126/science.1223467
Language: English
Page range: 31 - 31
Submitted on: Jul 31, 2025
Accepted on: Jul 28, 2026
Published on: Aug 14, 2026
Published by: Ubiquity Press
In partnership with: Paradigm Publishing Services

© 2026 Pamela Andanda, Johannes Machinya, Takudzwa Mutomba, Larisha Bedhesi, published by Ubiquity Press
This work is licensed under the Creative Commons Attribution 4.0 License.