Data Commercialisation in the South African Health Care Context

Authors

DOI:

https://doi.org/10.17159/1727-3781/2021/v24i0a8577

Keywords:

Data commercialisation, privacy protection, intellectual property, data sharing, data ownership, genomic research, Protection of Personal Information Act 4 of 2013

Abstract

Realisation of the value and the commercialisation potential of data is gaining exponential momentum. The combination of historical data exploitations and the use of technologies that allow for the triangulation of data results in the collection, storage, and processing of massive amounts of data require diligent data management, including adherence to privacy and other laws, both nationally and internationally. The intrinsic value of scientific data, especially in genomics, becomes apparent when data are shared, often in collaboration with international partners, and compiled into big data sets that are subsequently used for benefit, including commercial benefit. The purpose of this article is to explore the commercialisation of data in South Africa against the backdrop of the legal framework governing the protection of personal information, confidentiality and privacy, with a specific focus on genetic and genomic information. Related issues, such as the collection and sharing of data, ownership of data and challenges about informed consent are also considered. After a brief evaluation of the African regulatory landscape relating to the protection of personal information, the article concludes with a few recommendations aimed at improving the status quo and sensitising the South African public as to the value of their data and personal information, as well as the potential uses and abuses to which their personal information may be subjected

Downloads

Download data is not yet available.

Author Biographies

  • Dr Antonel Olckers, DNAbiotec (Pty) Ltd

    CEO of DNAbiotec (Pty) Ltd

  • Prof Melodie Nöthling Labuschaigne, Department of Jurisprudence, School of Law, University of South Africa

    Senior Professor, Department Jurisprudence.

References

Bibliography

Literature

American Society of Human Genetics, Ad Hoc Committee on DNA Technology "DNA Banking and DNA Analysis: Points to Consider" 1988 AJHG 781-783

Cath C "Governing Artificial Intelligence: Ethical, Legal, and Technical Opportunities and Challenges" 2018 Philos Trans A Math Phys Eng Sci 1-8 https://doi.org/10.1098/rsta.2018.0080

Chang V and Willis G "A Model to Compare Cloud and Non-Cloud Storage of Big Data: Future Generation Computer Systems" 2016 Future Generation Computer Systems 56-76

El Emam K et al "The Inadvertent Disclosure of Personal Health Information through Peer-to-Peer File Sharing Programs" 2010 JAMIA 148-158

Elvy S "Paying for Privacy and the Personal Data Economy" 2017 Colum L Rev 1369-1454

Grishin D et al 2018 "Accelerating Genomic Data Generation and Facilitating Genomic Data Access Using Decentralization, Privacy-Preserving Technologies and Equitable Compensation" 2018 BHTY 1-23 http://dx.doi.org/10.30953/bhty.v1.34

Haeusermann T et al "Open Sharing of Genomic Data: Who Does It and Why?" 2017 PLoS One 1-15 https://doi.org/10.1371/journal.pone.0177158

Hoedemaekers R and Ten Have H "Commercialisation of Genetic Diagnostic Services" 1998 Medicine, Healthcare and Philosophy 217-224

Russell SJ and Norvig P Artificial Intelligence: A Modern Approach 3rd ed (Pearson Prentice Hall Harlow 2010)

Scherer UM "Regulating Artificial Intelligence Systems: Risks, Challenges, Competencies, and Strategies" 2016 Harv J L & Tech 353-400

Su P "Direct-to-Consumer Genetic Testing: A Comprehensive View" 2013 Yale J Biol Med 359-365

Thorogood A "Canada: Will Privacy Rules Continue to Favour Open Science?" 2018 Human Genetics 595-602

Tiffin N, George A and LeFevre AE "How to Use Relevant Data for Maximal Benefit with Minimal Risk: Digital Health Data Governance to Protect Vulnerable Populations in Low-Income and Middle-Income Countries" 2019 BMJ Global Health 1-9 http://dx.doi.org/10.1136/bmjgh-2019-001395

Vayena E "Direct-to-Consumer Genomics on the Scales of Autonomy" 2014 J Med Ethics 310-314

Case law

European Union

Data Protection Commissioner v Facebook Ireland Limited and Maximillian Schrems Case C‑311/18

Maximillian Schrems v Data Protection Commissioner Case C-362/14 (Judgement: 6 October 2015)

South Africa

Mistry v Interim Medical and Dental Council of South Africa 1998 4 SA 1127 (CC)

NM v Smith 2007 5 SA 250 (CC)

United States

United States v Microsoft 584 US (2018)

Legislation

South Africa

Constitution of the Republic of South Africa Act 200 of 1993

Constitution of the Republic of South Africa, 1996

Copyright Act 98 of 1978

Electronic Communications Act 36 of 2005

Electronic Communications and Transactions Act 25 of 2002

Intellectual Property Laws Amendment Act 38 of 1997

Medical Schemes Act 131 of 1998

National Health Act 61 of 2003

Promotion of Access to Information Act 2 of 2000

Protection of Personal Information Act 4 of 2013

United States

st Century Cures Act, 2016

Affordable Care Act, 2010

Genetic Information Non-Discrimination Act, 2008

Health Insurance Portability and Accountability Act, 1996

Stored Communications Act 18 USC 2701

US Common Rule, 1991

Government publications

European Union

Regulation (EU) 2016/679 of the European Parliament and of the Council (27 April 2016)

South Africa

Proposed National Data and Cloud Policy (GN 306 in GG 44389 of 1 April 2021)

Regulations Relating to the Import and Export of Human Tissue, Blood, Blood Products, Cultured Cells, Stem Cells, Embryos, Foetal Tissue, Zygotes and Gametes (GN R181 in GG 35099 97 of 2 March 2012)

Regulations Relating to the Protection of Personal Information (GN R1383 in GG 42110 of 14 December 2018)

Regulations Relating to the Use of Human Biological Material (GN R177 in GG 35099 of 2 March 2012)

Internet sources

Alliance for Accelerating Excellence in Science in Africa 2020 Recommendations for Data and Biospecimen Governance in Africa - ASP Policy Paper 3 https://www.aasciences.africa/sites/default/files/

Publications/Recommendations%20for%20Data%20and%20Biospecimen%20Governance%20in%20Africa.pdf accessed 2 July 2021

Academy of Science of South Africa 2018 Human Genetics and Genomics in South Africa: Ethical, Legal and Social Implications http://dx.doi.org/10.17159/assaf.2018/0033 accessed 9 March 2021

Cambridge Dictionary 2021 Data https://dictionary.cambridge.org/dictionary/english/data accessed 9 March 2021

Deloitte 2017 Privacy is Paramount: Personal Data Protection in Africa https://www2.deloitte.com/content/dam/Deloitte/za/Documents/risk/za_Privacy_is_Paramount-Personal_Data_Protection_in_Africa.pdf accessed 30 June 2019

Department of Health and Social Care 2019 New Code of Conduct for Artificial Intelligence (AI) Systems Used by the NHS https://www.gov.uk/government/news/new-code-of-conduct-for-artificial-intelligence-ai-systems-used-by-the-nhs accessed 20 May 2019

Discovery 2019 How Our Business Works https://www.discovery.co.za/corporate/how-our-business-works accessed 24 June 2019

DLA Piper 2019 Data Protection Laws of the People's Republic of China https://www.dlapiperdataprotection.com/index.html?t=law&c=CN accessed 30 June 2019

DLA Piper 2021 Data Protection Laws of the World: United States https://www.dlapiperdataprotection.com/index.html?t=law&c=US accessed 15 February 2021

Dousa B 2020 Genetic Data, Privacy, and Peril: A Call for Greater Protections Amongst the US's Fractured Legal Landscape https://www.ccg.ai/blog/genetic-data-privacy-and-peril accessed 17 February 2021

Eggers WD, Hamill R and Ali A 2013 Data as the New Currency: Government's Role in Facilitating the Exchange https://www2.deloitte.com/insights/us/en/deloitte-review/issue-13/data-as-the-new-currency.html accessed 11 July 2019

European Union Date Unknown Data Processing Agreement (Template) https://gdpr.eu/data-processing-agreement/ accessed 30 June 2019

Gibbs S 2015 What is 'Safe Harbour' and Why Did the EUCJ Just Declare It Invalid? https://www.theguardian.com/technology/2015/oct/06/safe-harbour-european-court-declare-invalid-data-protection accessed 19 February 2021

Greenleaf G 2017 2014-2017 Update to Graham Greenleaf's Asian Data Privacy Laws: Trade and Human Rights Perspectives - UNSW Law Research Paper No 17-47 https://ssrn.com/abstract=3000766 accessed 2 July 2021

Grossman J 2018 Data is Currency, Don't Abuse It https://www.forbes.com/sites/forbesagencycouncil/2018/07/09/data-is-currency-dont-abuse-it/#2aadd1dd43d6 accessed 11 July 2019

Hao K 2018 What is Machine Learning? https://www.technologyreview.

com/2018/11/17/103781/what-is-machine-learning-we-drew-you-another-flowchart/ accessed 9 March 2021

Information Regulator 2017 2017-2020 Strategic Plan https://www.justice.gov.za/inforeg/docs/InfoRegSA-2017-2020StrategicPlan.pdf accessed 30 June 2019

Joudeh M and Bevilacqua J 2017 Digital Fingerprints: The Data You Leave Behind https://www.forbes.com/sites/riskmap/2017/10/20/digital-fingerprints-the-data-you-leave-behind/?sh=4f19e7907bce accessed 2 July 2019

Karp P 2019 Australians' Medicare Details Illegally Sold on Darknet: Two Years After Breach Exposed https://www.theguardian.com/australia-news/2019/may/16/australians-medicare-details-illegally-sold-on-darknet-two-years-after-breach-exposed accessed 11 July 2019

McGlasson L 2008 Wells Fargo Reveals Data Breach: Thousands of Consumer Records Compromised by Data Theft from Vendor https://www.bankinfosecurity.com/wells-fargo-reveals-data-breach-a-944 accessed 18 February 2021

Medical Research Council 2014 Human Tissue and Biological Samples for Use in Research: Operational and Ethical Guidelines https://mrc.ukri.org/publications/browse/human-tissue-and-biological-samples-for-use-in-research/ accessed 24 June 2019

Njilo N 2019 Stellenbosch University Demands Return of DNA Samples - But UK Lab Hits Back https://www.timeslive.co.za/news/south-africa/2019-10-16-stellenbosch-university-demands-return-of-dna-samples-but-uk-lab-hits-back/ accessed 18 February 2021

Outside Insight Date Unknown Online Breadcrumbs: The Trail Individuals Leave Behind https://outsideinsight.com/insights/online-breadcrumbs-the-trail-individuals-leave-behind/ accessed 2 July 2021

Pash C 2018 A Data Bungle Put at Risk the Private Health Details of Millions of Australians https://www.businessinsider.com.au/data-breach-private-health-details-medicare-2018-3 accessed 11 July 2019

Phillips F 2018 GDPR Compliance Collides with US Law at Supreme Court https://www.lexology.com/library/detail.aspx?g=42443820-3143-4ed5-9b50-b251899fad18 accessed 30 June 2019

Phillips A and Charbonneau J 2016 Giving Away More than Your Genomic Sequence? Privacy in the Direct-to-Consumer Genetic Testing Space. https://www.ftc.gov/system/files/documents/public_comments/2015/10/00057-98101.pdf accessed 19 July 2019

South African Medical Research Council 2018 Genomic Centre in Cape Town to Decode Genes http://www.mrc.ac.za/media-release/genomics-centre-cape-town-decode-genes accessed 29 June 2019

Schwab K 2016 The Fourth Industrial Revolution: What It Means, How to Respond https://www.weforum.org/agenda/2016/01/the-fourth-industrial-revolution-what-it-means-and-how-to-respond/ accessed 30 March 2019

Taylor Wessing Global Data Hub 2018 Data Transfer Agreements https://globaldatahub.taylorwessing.com/article/data-transfer-agreements accessed 30 June 2019

Techterms 2014 Digital Footprint https://techterms.com/definition/digital_footprint accessed 2 July 2021

Wu T 2015 Facebook Should Pay All of Us https://www.newyorker.com/business/currency/facebook-should-pay-all-of-us accessed 9 March 2021

Published

12-08-2021

Issue

Section

Articles

How to Cite

Botes, M., Olckers, A. ., & Slabbert, M. L. (2021). Data Commercialisation in the South African Health Care Context. Potchefstroom Electronic Law Journal, 24, 1-35. https://doi.org/10.17159/1727-3781/2021/v24i0a8577

Similar Articles

51-60 of 1176

You may also start an advanced similarity search for this article.