Safeguarding the future of genomic research in South Africa: Broad consent and the protection of Personal Information Act No. 4 of 2013

Article

Staunton, C., Adams, R., Botes, M., Dove, E., Horn, L., Labuschaigne, M., Loots, G., Mahomed, S., Makuba, J., Olckers, A., Pepper, M., Pope, A., Ramsay, M., Loideain, N. and De Vries, J. 2019. Safeguarding the future of genomic research in South Africa: Broad consent and the protection of Personal Information Act No. 4 of 2013. South African Medical Journal. 109 (7), pp. 468-470. https://doi.org/10.7196/SAMJ.2019.v109i7.14148
TypeArticle
TitleSafeguarding the future of genomic research in South Africa: Broad consent and the protection of Personal Information Act No. 4 of 2013
AuthorsStaunton, C., Adams, R., Botes, M., Dove, E., Horn, L., Labuschaigne, M., Loots, G., Mahomed, S., Makuba, J., Olckers, A., Pepper, M., Pope, A., Ramsay, M., Loideain, N. and De Vries, J.
Abstract

Genomic research has been identified in South Africa (SA) as important in developing a strong bio-economy that has the potential to improve human health, drive job creation and offer potential solutions to the disease burden harboured by low- and middle-income countries. Central to the success of genomic research is the wide sharing of biological samples and data, but the true value of data can only be unlocked if there are laws and policies in place that foster the legal and ethical sharing of genomic data. The introduction and entry into force of SA's Protection of Personal Information Act (POPIA) No. 4 of 2013 is to be welcomed, but the wording of POPIA as it pertains to consent for the processing of personal information for research purposes has sparked a debate about the legal status of broad consent. We argue that a purposive interpretation of the legislation would permit broad consent for the processing of personal information for research. Although there are ongoing debates surrounding the ethical use of broad consent in Africa, the objective of this article is not to engage with the ethics of broad consent itself, but rather to focus on the legal status of broad consent for genomic data sharing under POPIA.

PublisherHealth & Medical Publishing Group
JournalSouth African Medical Journal
ISSN0256-9574
Electronic2078-5135
Publication dates
Print28 Jun 2019
Publication process dates
Deposited17 Jul 2019
Accepted13 May 2019
Output statusPublished
Publisher's version
License
Copyright Statement

Copyright remains in the Author’s name. The work is licensed under a Creative Commons Attribution - Noncommercial Works License. Published in: South African Medical Journal 2019;109(7):468-470. DOI:10.7196/SAMJ.2019.v109i7.14148

Additional information

Suid-Afrikaanse tydskrif vir geneeskunde

Digital Object Identifier (DOI)https://doi.org/10.7196/SAMJ.2019.v109i7.14148
LanguageEnglish
Permalink -

https://repository.mdx.ac.uk/item/885xw

Log in to edit

Download files

Publisher's version
12657-57556-1-PB.pdf
License: CC BY-NC 4.0

  • 28
    total views
  • 11
    total downloads
  • 1
    views this month
  • 0
    downloads this month

Export as

Related outputs

Appropriate safeguards and Article 89 of the GDPR: considerations for biobank, databank and genetic research
Staunton, C., Slokenberga, S., Parziale, A. and Mascalzoni, D. 2022. Appropriate safeguards and Article 89 of the GDPR: considerations for biobank, databank and genetic research. Frontiers in Genetics. 13, pp. 1-10. https://doi.org/10.3389/fgene.2022.719317
Return of research results (RoRR) to the healthy CHRIS cohort: designing a policy with the participants
Staunton, C., Kösters, M., Pramstaller, P. and Mascalzoni, D. 2021. Return of research results (RoRR) to the healthy CHRIS cohort: designing a policy with the participants. Journal of Community Genetics. 12 (4), pp. 577-592. https://doi.org/10.1007/s12687-021-00536-1
Balancing scientific interests and the rights of participants in designing a recall by genotype study
Mascalzoni, D., Biasiotto, R., Borsche, M., Brüggemann, N., De Grandi, A., Goegele, M., Frygner-Holm, S., Klein, C., Kösters, M., Staunton, C., Pramstaller, P., Krawczak, M. and Hicks, A. 2021. Balancing scientific interests and the rights of participants in designing a recall by genotype study. European Journal of Human Genetics. 29 (7), pp. 1146-1157. https://doi.org/10.1038/s41431-021-00860-7
The governance of personal data for COVID-19 response: perspective from the access to COVID-19 tools accelerator
Staunton, C., Hannay, E., John, O., Johnson, M., Kadam, R., Sampath, R., ACT-Accelerator R&D and Digital Working Group 2021. The governance of personal data for COVID-19 response: perspective from the access to COVID-19 tools accelerator. BMJ Global Health. 6 (5), pp. 1-3. https://doi.org/10.1136/bmjgh-2021-006095
Public involvement in the governance of population-level biomedical research: unresolved questions and future directions
Erikainen, S., Friesen, P., Rand, L., Jongsma, K., Dunn, M., Sorbie, A., McCoy, M., Bell, J., Burgess, M., Chen, H., Chico, V., Cunningham-Burley, S., Darbyshire, J., Dawson, R., Evans, A., Fahy, N., Finlay, T., Frith, L., Goldenberg, A., Hinton, L., Hoppe, N., Hughes, N., Koenig, B., Lignou, S., McGowan, M., Parker, M., Prainsack, B., Shabani, M., Staunton, C., Thompson, R., Varnai, K., Vayena, E., Williams, O., Williamson, M., Chan, S. and Sheehan, M. 2021. Public involvement in the governance of population-level biomedical research: unresolved questions and future directions. Journal of Medical Ethics. 47 (7), pp. 522-525. https://doi.org/10.1136/medethics-2020-106530
Engaging research ethics committees to develop an ethics and governance framework for best practices in genomic research and biobanking in Africa: the H3Africa model [Commentary]
Tindana, P., Yakubu, A., Staunton, C., Matimba, A., Littler, K., Madden, E., Munung, N. and de Vries, J. 2019. Engaging research ethics committees to develop an ethics and governance framework for best practices in genomic research and biobanking in Africa: the H3Africa model [Commentary]. BMC Medical Ethics. 20 (1), p. 69. https://doi.org/10.1186/s12910-019-0398-2
The governance of genomic biobank research in Africa: reframing the regulatory tilt
Staunton, C. and de Vries, J. 2020. The governance of genomic biobank research in Africa: reframing the regulatory tilt. Journal of Law and Biosciences. 0, pp. 1-20. https://doi.org/10.1093/jlb/lsz018
Between a rock and a hard place: COVID-19 and South Africa’s response
Staunton, C., Swanepoel, C. and Labuschagine, M. 2020. Between a rock and a hard place: COVID-19 and South Africa’s response. Journal of Law and the Biosciences. 7 (1), pp. 1-12. https://doi.org/10.1093/jlb/lsaa052
Protection of Personal Information Act 2013 and data protection for health research in South Africa
Staunton, C., Adams, R., Anderson, D., Croxton, T., Kamuya, D., Munene, M. and Swanepoel, C. 2020. Protection of Personal Information Act 2013 and data protection for health research in South Africa. International Data Privacy Law Journal. 10 (2), pp. 160-179. https://doi.org/10.1093/idpl/ipz024
Negotiating requests for reimbursement for community engagement: challenges in developing an educational video for genomic biobanking research in South Africa
Staunton, C., Abayomi, A., Bassa, F. and Moodley, K. 2019. Negotiating requests for reimbursement for community engagement: challenges in developing an educational video for genomic biobanking research in South Africa. Journal of Empirical Research on Human Research Ethics. https://doi.org/10.1177/1556264619856223
The GDPR and the research exemption: considerations on the necessary safeguards for research biobanks
Staunton, C., Slokenberga, S. and Mascalzoni, D. 2019. The GDPR and the research exemption: considerations on the necessary safeguards for research biobanks. European Journal of Human Genetics. 27 (8), pp. 1159-1167. https://doi.org/10.1038/s41431-019-0386-5
Protection of personal information Act No. 4 of 2013: Implications for biobanks
Staunton, C. and De Stadler, E. 2019. Protection of personal information Act No. 4 of 2013: Implications for biobanks. South African Medical Journal. 109 (4), pp. 232-234. https://doi.org/10.7196/SAMJ.2019.v109i4.13617
"It’s about actually having a proactive regulatory framework versus a reactive one" - stakeholder perspectives on the governance of embryonic stem cell research in Ireland
Staunton, C. 2018. "It’s about actually having a proactive regulatory framework versus a reactive one" - stakeholder perspectives on the governance of embryonic stem cell research in Ireland. Medico-Legal Journal of Ireland. 24 (2), pp. 97-105.
Ethical and practical issues to consider in the governance of genomic and human research data and data sharing in South Africa: a meeting report
Staunton, C., Adams, R., Dove, E., Harrriman, N., Horn, L., Labuschaigne, M., Mulder, N., Olckers, A., Pope, A., Ramsay, M., Swanepoel, C., Ni Loideain, N. and deVries, J. 2019. Ethical and practical issues to consider in the governance of genomic and human research data and data sharing in South Africa: a meeting report. Open Research Africa. 2 (15), pp. 1-11. https://doi.org/10.12688/aasopenres.12968.1
The regulation of stem cell research in Ireland: from the Commission on Assisted Human Reproduction to the Assisted Human Reproduction Bill 2017
Staunton, C. 2018. The regulation of stem cell research in Ireland: from the Commission on Assisted Human Reproduction to the Assisted Human Reproduction Bill 2017. Medical Law International. 18 (1), pp. 35-58. https://doi.org/10.1177/0968533218764543
Data mining and biological sample exportation from South Africa: a new wave of bioexploitation under the guise of clinical care?
Staunton, C. and Moodley, K. 2016. Data mining and biological sample exportation from South Africa: a new wave of bioexploitation under the guise of clinical care? South African Medical Journal. 106 (2), pp. 136-138. https://doi.org/10.7196/SAMJ.2016.v106i2.10248
Rules of engagement: perspectives on stakeholder engagement for genomic biobanking research in South Africa
Staunton, C., Tindana, P., Hendricks, M. and Moodley, K. 2018. Rules of engagement: perspectives on stakeholder engagement for genomic biobanking research in South Africa. BMC Medical Ethics. 19. https://doi.org/10.1186/s12910-018-0252-y
Informed consent for HIV cure research in South Africa: issues to consider
Staunton, C. 2015. Informed consent for HIV cure research in South Africa: issues to consider. BMC Medical Ethics. 16. https://doi.org/10.1186/1472-6939-16-3
Synergies, tensions and challenges in HIV prevention, treatment and cure research: exploratory conversations with HIV experts in South Africa
Moodley, K., Rossouw, T., Staunton, C. and Colvin, C. 2016. Synergies, tensions and challenges in HIV prevention, treatment and cure research: exploratory conversations with HIV experts in South Africa. BMC Medical Ethics. 17. https://doi.org/10.1186/s12910-016-0109-1
Harmonisation of Biobank Regulations in Africa: lessons to be learned from Europe
Staunton, C. 2016. Harmonisation of Biobank Regulations in Africa: lessons to be learned from Europe. Contemporary Issues in Law. 13 (4), pp. 267-286.
The implications of Methylphenidate use by healthy medical students and doctors in South Africa
Beyer, C., Staunton, C. and Moodley, K. 2014. The implications of Methylphenidate use by healthy medical students and doctors in South Africa. BMC Medical Ethics. 15. https://doi.org/10.1186/1472-6939-15-20
Features: Community engagement for biobanking research: perspectives from Africa
Staunton, C. and Moodley, K. 2016. Features: Community engagement for biobanking research: perspectives from Africa. Asia Pacific Biotech News. 20 (2), pp. 14-26. https://doi.org/10.1142/S0219030316000100
Ethical challenges in developing an educational video to empower potential participants during consent processes in future HIV cure research in South Africa
Staunton, C., de Roubaix, M., Baatjies, D., Black, G., Hendricks, M., Rossouw, T. and Moodley, K. 2018. Ethical challenges in developing an educational video to empower potential participants during consent processes in future HIV cure research in South Africa. Journal of Virus Eradication. 4 (2), pp. 99-102. https://doi.org/10.1016/S2055-6640(20)30251-X
Impact of an educational video as a consent tool on knowledge about cure research among patients and caregivers at HIV clinics in South Africa
Hendricks, M., Nair, G., Staunton, C., Pather, M., Garrett, N., Baatjies, D., Kidd, M. and Moodley, K. 2018. Impact of an educational video as a consent tool on knowledge about cure research among patients and caregivers at HIV clinics in South Africa. Journal of Virus Eradication. 4 (2), pp. 103-107. https://doi.org/10.1016/S2055-6640(20)30252-1
Regulation of genomic and biobanking research in Africa: a content analysis of ethics guidelines, policies and procedures from 22 African countries
de Vries, J., Munung, S. N., Matimba, A., McCurdy, S., Ouwe Missi Oukem-Boyer, O., Staunton, C., Yakubu, A. and Tindana, P. 2017. Regulation of genomic and biobanking research in Africa: a content analysis of ethics guidelines, policies and procedures from 22 African countries. BMC Medical Ethics. 18. https://doi.org/10.1186/s12910-016-0165-6