Data management instruments to protect the personal information of children and adolescents in sub-Saharan Africa
DOI:
https://doi.org/10.29173/iq1044Keywords:
Data Management, children and adolescents, Sub-Saharan Africa, personal information protection, health research, POPIA, GDPRAbstract
Recent data protection regulatory frameworks, such as the Protection of Personal Information Act (POPI Act) in South Africa and the General Data Protection Regulation (GDPR) in the European Union, impose governance requirements for research involving high-risk and vulnerable groups such as children and adolescents. Our paper's objective is to unpack what constitutes adequate safeguards to protect the personal information of vulnerable populations such as children and adolescents. We suggest strategies to adhere meaningfully to the principal aims of data protection regulations. Navigating this within established research projects raises questions about how to interpret regulatory frameworks to build on existing mechanisms already used by researchers. Therefore, we will explore a series of best practices in safeguarding the personal information of children, adolescents and young people (0-24 years old), who represent more than half of sub-Saharan Africa's population. We discuss the actions taken by the research group to ensure regulations such as GDPR and POPIA effectively build on existing data protection mechanisms for research projects at all stages, focusing on promoting regulatory alignment throughout the data lifecycle. Our goal is to stimulate a broader conversation on improving the protection of sensitive personal information of children, adolescents and young people in sub-Saharan Africa. We join this discussion as a research group generating evidence influencing social and health policy and programming for young people in sub-Saharan Africa. Our contribution draws on our work adhering to multiple transnational governance frameworks imposed by national legislation, such as data protection regulations, funders, and academic institutions.
References
Adams, R., Adeleke, F., Anderson, D., Bawa, A., Branson, N., Christoffels, A., de Vries, J., Etheredge, H., et al. 2021. POPIA Code of Conduct for Research. South African Journal of Science. 117(5/6). DOI: https://doi.org/10.17159/sajs.2021/10933.
Bostock, L. 2002. "God, she's gonna report me": the ethics of child protection in poverty research. Children & Society. 16(4):273–283. DOI: https://doi.org/10.1002/chi.712.
Caldwell, P.H., Murphy, S.B., Butow, P.N. & Craig, J.C. 2004. Clinical trials in children. The Lancet. 364(9436):803–811. DOI: https://doi.org/10.1016/S0140-6736(04)16942-0.
Cluver, L., Boyes, M., Bustamam, A., Casale, M., Henderson, K., Kuo, K. & Sello, L. 2015. The cost of action: Large scale, longitudinal quantitative research with AIDS-affected children in South Africa. Ethical quandaries in social research. 41–56.
Cluver, L.D., Meinck, F., Steinert, J.I., Shenderovich, Y., Doubt, J., Herrero Romero, R., Lombard, C.J., Redfern, A., et al. 2018. Parenting for Lifelong Health: a pragmatic cluster randomised controlled trial of a non-commercialised parenting programme for adolescents and their families in South Africa. BMJ Global Health. 3(1):e000539. DOI: https://doi.org/10.1136/bmjgh-2017-000539.
Daigle, B. 2021. Data Protection Laws in Africa: A Pan- African Survey and Noted Trends. Journal of International Commerce and Economics. 27.
He, E., Hertzog, L., Toska, E., Carty, C. & Cluver, L. 2020. mHealth entry points for HIV prevention and care among adolescents and young people in South Africa. CSSR Working Paper. (457). DOI: https://doi.org/10.13140/RG.2.2.36698.98241.
Hensen, B., Mackworth-Young, C.R.S., Simwinga, M., Abdelmagid, N., Banda, J., Mavodza, C., Doyle, A.M., Bonell, C., et al. 2021. Remote data collection for public health research in a COVID-19 era: ethical implications, challenges and opportunities. Health Policy and Planning. 36(3):360–368. DOI: https://doi.org/10.1093/heapol/czaa158.
Hertzog, L., Wittesaele, C., Titus, R., Chen, J.J., Kelly, J., Langwenya, N., Baerecke, L. & Toska, E. 2021. Seven essential instruments for POPIA compliance in research involving children and adolescents in South Africa. South African Journal of Science. 117(9/10). DOI: https://doi.org/10.17159/sajs.2021/12290.
Joseph, P.D., Craig, J.C. & Caldwell, P.H.Y. 2015. Clinical trials in children: Clinical trials in children. British Journal of Clinical Pharmacology. 79(3):357–369. DOI: https://doi.org/10.1111/bcp.12305.
Lachman, J.M., Sherr, L.T., Cluver, L., Ward, C.L., Hutchings, J. & Gardner, F. 2016. Integrating Evidence and Context to Develop a Parenting Program for Low-Income Families in South Africa. Journal of Child and Family Studies. 25(7):2337–2352. DOI: https://doi.org/10.1007/s10826-016-0389-6.
Ledford, H. 2021. Should children get COVID vaccines? What the science says. Nature. 595(7869):638–639. DOI: https://doi.org/10.1038/d41586-021-01898-9.
Mbembe, A. 2019. Bodies as borders. From the European South. 4:5–18.
Protection of Personal Information Act (POPI Act). 2013. Available: https://popia.co.za/ [2022, March 18].
Sarr, F. & Savoy, B. 2018. The Restitution of African Cultural Heritage: Toward a New Relational Ethics. Ministère de la culture ed. Translated by Drew Burk. Paris.
Sawyer, S.M., Azzopardi, P.S., Wickremarathne, D. & Patton, G.C. 2018. The age of adolescence. The Lancet Child & Adolescent Health. 2(3):223–228. DOI: https://doi.org/10.1016/S2352-4642(18)30022-1.
Shrestha, B. & Dunn, L. 2020. The Declaration of Helsinki on Medical Research involving Human Subjects: A Review of Seventh Revision. Journal of Nepal Health Research Council. 17(4):548–552. DOI: https://doi.org/10.33314/jnhrc.v17i4.1042.
Strode, A. & Slack, C. 2012. Selected ethical-legal norms in child and adolescent HIV prevention research: Consent, confidentiality and mandatory reporting [revised]. Durban, South Africa: European and Developing Countries Clinical Trials Partnership (EDCTP).
Toska, E., Gittings, L., Hodes, R., Cluver, L.D., Govender, K., Chademana, K.E. & Gutiérrez, V.E. 2016. Resourcing resilience: social protection for HIV prevention amongst children and adolescents in Eastern and Southern Africa. African Journal of AIDS Research. 15(2):123–140. DOI: https://doi.org/10.2989/16085906.2016.1194299.
UNESCO. 2013. Adult and youth literacy: National, regional and global trends, 1985–2015. Montreal: UNESCO Institute for Statistics.
UNICEF. 2019. Adolescent Demographics. Available: https://data.unicef.org/topic/adolescents/demographics/ [2022, February 02].
Whyte, A., Molloy, L., Grootveld, M. & Thorley, M. 2022. Supporting Data Management Planning. ACME-FAIR Issue. (4). DOI: https://doi.org/10.5281/ZENODO.6346747.
Williams, J. 2008. The Declaration of Helsinki and public health. Bulletin of the World Health Organization. 86(8):650–651. DOI: https://doi.org/10.2471/BLT.08.050955.
Downloads
Published
How to Cite
Issue
Section
License
Copyright (c) 2023 Lucas Hertzog, Jenny Chen-Charles, Camille Wittesaele, Kristen de Graaf, Raylene Titus, Jane Kelly, Nontokozo Langwenya, Lauren Baerecke, Boladé Banougnin, Wylene Saal, John Southall, Lucie Cluver, Elona Toska
This work is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License.
This license lets others remix, tweak, and build upon your work non-commercially, and although their new works must also acknowledge you and be non-commercial, they don’t have to license their derivative works on the same terms.
The Creative Commons-Attribution-Noncommercial License 4.0 International applies to all works published by IASSIST Quarterly. Authors will retain copyright of the work. Your contribution will be available at the IASSIST Quarterly website when announced on the IASSIST list server.
