Data mining and biological sample exportation from South Africa: a new wave of bioexploitation under the guise of clinical care?

Article


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
TypeArticle
TitleData mining and biological sample exportation from South Africa: a new wave of bioexploitation under the guise of clinical care?
AuthorsStaunton, C. and Moodley, K.
Abstract

Discovery Health, one of the leading healthcare funders in South Africa (SA), will offer genetic testing to its members for USD250 (approximately ZAR3 400) per test from 2016. On the surface, this appears to be innovative and futuristic. However, a deeper look at this announcement reveals considerable problems in the exportation of biological samples and data out of SA, and brings into sharp focus the lack of protection in place for potential donors. In return for a reduced-cost genetic test, which will nevertheless be billed to a member’s savings plan, data from the patient’s results and probably the sample itself Author: OK? will be sent to the USA for storage, research purposes and possible commercialisation, Author ‘commercial use’? with no further benefit for the patient. This development has demonstrated the need for more stringent protection of the movement of biological samples and data out of SA, particularly with reference to consenting procedures, material transfer agreements, and the export of biological data themselves.

PublisherHealth & Medical Publishing Group
JournalSouth African Medical Journal
ISSN0256-9574
Publication dates
Print07 Jan 2016
Publication process dates
Deposited23 Mar 2018
Submitted22 Oct 2015
Accepted18 Feb 2016
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.

Digital Object Identifier (DOI)https://doi.org/10.7196/SAMJ.2016.v106i2.10248
LanguageEnglish
Permalink -

https://repository.mdx.ac.uk/item/87939

Download files


Publisher's version

Restricted files

Accepted author manuscript

  • 19
    total views
  • 9
    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
Safeguarding the future of genomic research in South Africa: Broad consent and the protection of Personal Information Act No. 4 of 2013
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
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
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