Shows
Health LawEthical considerations in establishing an open access genomics database in South Africa.In this podcast episode, Ms Nomfundo Mthembu and Ms Amy Gooden discuss the ethical considerations in establishing an open access genomics database in South Africa.
Summary
Although genomics research has the potential to improve healthcare, only a small percentage of genomic data used internationally relates to persons of African origin. Although the establishment of a large scale, open access genomics database of South Africans may contribute to solving this problem, it is not without its ethics concerns, such as privacy risks and informed consent. Open consent offers a potential solution by being explicit...2023-10-0207 min
Health LawData Transfer Agreement (DTA) template for the South African research communityIn a podcast, Professor Mnyongani interviews Dr Swales and Dr Donnelly, who developed a Data Transfer Agreement (DTA) template for the South African research community.
Summary
The DTA template helps ensure legal compliance, notably with the Protection of Personal Information Act (POPIA). It aids researchers by providing a standardized, flexible legal document, saving time and reducing costs. Unlike the regulatory approach of the 2018 Material Transfer Agreement by the Health Ministry, their ‘empowerment approach’ equips researchers with tools and knowledge without mandating usage. The DTA emphasizes clear data ownership and adaptability for commercial purposes, ensuring legality and...2023-08-3109 min
Health LawOwnership of the HeLa cell line - a South African perspectiveIn this podcast episode, Dr Bonginkosi Shozi discusses the ownership of the HeLa cell line with Professor Donrich Thaldar.
Summary
The HeLa cell line was created in 1951 without consent from Henrietta Lacks, the person whose tissue sample was used. Ownership of cell lines is investigated from a South African legal perspective by considering three possible contemporary scenarios bearing points of similarity to the Henrietta Lacks case. The importance of legal compliance and good faith is highlighted.
Further reading
Thaldar DW. Who would own the HeLa cell line...2023-08-3109 min
Health LawWhy Africa should abandon the idea of genomic sovereignty in research involving humans In this podcastepisode, Professor Donrich Thaldar and Dr Faith Kabatadiscuss the governance of human genomic data in Africa.
Summary
Genomic sovereignty has no utility value in human genomic research as it violates the rights of individuals and researchers. Mexico’s regulatory approach that is based on genomic sovereignty is contrasted with Finland’s more individual-centric, human rightsapproach. It is suggested that this human rights approach is more promising, as it aligns with states’ obligations under international human rights law—in particular the right to science.
Further reading
Kabata F...2023-08-3106 min
Health LawThe res nullius construction of human genomic data In this episode, we speak about the res nullius construction of human genomic data.
Summary
No one domain of the law holds exclusive sway over human genomic data. Instead, genomic data have a multidimensional legal nature, meaning that multiple legal domains — including property law, privacy law, contract law, and intellectual property law — are all applicable. From a property law perspective, the res nullius construction of genomic data provides a useful way to understand how newly generated genomic sequences are viewed by the law.
Further reading
Thaldar et al...2023-08-3111 min
Health LawIs it time to reconsider the genetic link requirements?In this podcast, Professor Donrich Thaldar and Ms Aliki Edgcumbe discuss the genetic-link requirement for surrogate motherhood agreements.
Summary
What do Kim Kardashian, Elon Musk, and Elton John have in common? Well, it is not just their mega success as celebrities. These stars share something far more interesting – they are just some of the rich and famous who have used a surrogate to have their children.
But, the surrogacy stories are not limited to the gossip columns in your local tattler. The ones less told are the stories of ordinary in...2023-03-2822 min
Health LawScientific freedom
In this podcast episode, Professor Donrich Thaldar and Ms Michaela Steytler discuss the right to freedom of scientific research.
Summary
Despite the fact that the Constitution explicitly protects the right to freedom of scientific research, this right features neither in the preamble of any legislation, nor in any reported case law. If the right to freedom of scientific research remains in obscurity, South Africa can slip into totalitarian control of the scientific enterprise – to the detriment not only of scientists, but also of society in general. The right to...2022-12-1511 min
Health LawThe multidimensional legal nature of personal genomic sequence data In this episode, Professor Donrich Thaldar explains the multidimensional legal nature of personal genomic sequence data.
Summary
There are multiple legal dimensions applicable to personal genomic sequence data. These include (1) property rights, (2) personality rights, and (3) intellectual property rights. (1) Personal genomic sequence data can be owned. The entity that is in the best position to claim ownership of personal genomic sequence data is the research institution that generates such data, i.e., the research institution that does the sequencing of the DNA. However, the ownership of personal genomic sequence data can also be provided...2022-11-1006 min
Health LawDTA template for South Africa: Comments invited In this podcast episode, Professor Donrich Thaldar and Dr Dusty-Lee Donnelly discuss the new data transfer agreement (DTA) template (beta version) that is now available for public comment.
The DTA template (beta version) can be accessed here: https://doi.org/10.5281/zenodo.7110269
Comments can be emailed to healthlaw@ukzn.ac.za by no later than 15 November 2022.
Funding
This podcast was made possible by a grant from the U.S. National Institute of Mental Health and the U.S. National Institutes of Health (award number U01MH127690) under the...2022-10-2705 min
Health LawIs open identity gamete donation possible in South Africa?In this podcast episode, Professor Donrich Thaldar and Dr Bonginkosi Shozi discuss whether gamete (sperm and egg) donors in South Africa must be anonymous, or whether they can choose to disclose their identities.
Summary
South African gamete banks and gamete donation agencies do not offer open-identity donors, as it is generally believed that donors must, by law, be anonymous. We analyse South African legislation, regulations and case law to show that this belief is mistaken, and that gamete donation in South Africa can be anywhere on the spectrum between anonymous and known. Accordingly...2022-09-0714 min
Health LawWhy POPIA does not apply to DNAIn this podcast episode, Professor Donrich Thaldar discusses the question of whether POPIA (the South African Protection of Personal Information Act) applies to DNA.
Summary
Does DNA fall within the ambit of POPIA? Many people mistakenly think that it does because DNA contains genetic information. However, one must distinguish DNA from the genetic information that it contains. POPIA only applies to personal information that is entered in a record by or for a responsible party. Is genetic information entered in DNA by or for a responsible party? Clearly not – genetic information naturally occurs in...2022-09-0605 min
Health LawCan AI be inventive?In this podcast episode, Professor Donrich Thaldar discusses the issue of artificial intelligence (AI) and personality with Meshandren Naidoo.
Summary
DABUS, a cognition-based AI, was recently listed as inventor in a South African patent. This caused controversy globally regarding the nature of inventorship status – can AI qualify as an inventor? Opponents to the position taken in South Africa have raised questions about (1) whether the matter was truly considered by the South African Patent Office; (2) whether AI inventorship is ethical, and (3) whether this patent means that AI now has legal personality. In this podcast ep...2022-09-0610 min
Health LawHuman heritable genome editing- Why context and culture matterIn this podcast episode, Professor Donrich Thaldar discusses the issue of heritable human genome editing with Dr Bonginkosi Shozi and Ms Tamanda Kamwendo.
Summary
The global discourse on heritable genome editing is dominated by Western perspectives. We argue for a broadening of this discourse, pointing out the significance of differences in culture and context between countries. These differences illustrate the need for approaches to the governance of heritable genome editing that are open to a variety of perspectives, a point we make with reference to South Africa. We warn that failing to account...2022-09-0612 min
Health LawCan one own human biological material that is donated for research?In this podcast, Professor Donrich Thaldar and Dr Bonginkosi Shozi discuss the question of whether human biological material that is donated for research can be owned.
Summary
Can human biological material that is used for research be owned in South African law? The answer to this question is contested, but under-investigated. This situation leads to legal uncertainty for local scientists and their international collaborators. We argue that human biological material in the research context can indeed be owned. Their reasons are as follows: (1) Since South Africa’s common law is dynamic, it should re...2022-09-0610 min
Health LawKungani imfuneko yokuthi kube nobuhlobo bolibofuzo ezivumelwaneni zokuthwalelana abantwana ingenabo ubulungiswaThis is the Zulu version of the podcast titled "Why the genetic link requirement for surrogate motherhood is unjust" presented by Nomfundo Mthembu and discusses the issue of infertile people’s access to surrogate motherhood.
Summary
South African surrogacy law includes a provision, known as the genetic link requirement, that commissioning parents must use their own gametes for the conception of the surrogacy child. As a result, infertile persons who cannot contribute gametes for the conception of a child are prohibited from accessing surrogacy as a way to establish families. This is a cl...2022-08-1611 min
Health LawWhy the genetic link requirement for surrogate motherhood is unjustIn this podcast episode, Professor Donrich Thaldar discusses the issue of infertile people’s access to surrogate motherhood.
Summary
South African surrogacy law includes a provision, known as the genetic link requirement, that commissioning parents must use their own gametes for the conception of the surrogacy child. As a result, infertile persons who cannot contribute gametes for the conception of a child are prohibited from accessing surrogacy as a way to establish families. This is a clear violation of infertile persons’ right to family life, which includes the right to establish a family. The...2022-08-1611 min
Health LawThe meaning of ‘public interest’ in POPIAIn this podcast episode, Professor Donrich Thaldar discusses the meaning of ‘public interest’ in POPIA (the South African Protection of Personal Information Act) and its relevance to the research community.
Summary
‘Public interest’ is an important concept in POPIA. The criteria for being in the public interest that emerged in our case law are:
The ‘public’ can refer to any community in South Africa,
such a community must benefit as a collective
the benefit to the community can be indirect, and can coincide with direct benefit to an individual or a smaller section with...2022-08-1213 min
Health LawThe meaning of ‘responsible party’ in POPIAIn this podcast episode, Professor Donrich Thaldar and Dr Dusty-Lee Donnelly discuss the meaning of ‘responsible party’ in POPIA (the South African Protection of Personal Information Act) and its impact on the research community.
Summary
In the research context, a ‘responsible party’ as contemplated in terms of POPIA is typically the research institution as well as the individual researcher involved. Given the potential civil liability that individual researchers could face, we suggest that the Code of Conduct for Research should place a duty on research institutions to indemnify their researchers from civil liability. While th...2022-08-1211 min
Health LawHow to encourage AI innovation in the South African healthcare sectorIn this podcast episode, Professor Donrich Thaldar and Shiniel Naidoo discuss policy proposals to encourage artificial intelligence (AI) innovation in the South African healthcare sector.
Summary
Despite the tremendous promise offered by artificial intelligence (AI) for healthcare in South Africa, existing policy frameworks are inadequate for encouraging innovation in this field. Practical and solution-driven policy recommendations are needed to encourage the creation and use of AI systems. Our recommendations include the establishment of an ‘AI in healthcare reconciliation commission’ and making public sector health data accessible to spur on development of AI solutions.
2022-08-1210 min
Health LawTrailer - Welcome to Health LawWe aim to engage in topical health law and ethics research and teaching from a uniquely South African perspective.2022-08-1200 min