Health Law

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 for through contract. (2) Personal genomic sequence data are the object of data subjects’ personality rights, which includes privacy rights. (3) Personal genomic sequence data are also the object of intellectual property rights. The interplay between legal dimensions (1), (2) and (3) is explained: Personality rights constrain ownership rights, while the exploitation of intellectual property rights is constrained by both personality rights and ownership rights. All of these rights applicable to personal genomic sequence data should be acknowledged and harmonized for such data to be used effectively.

Further reading

Thaldar DW, Townsend BA, Donnelly D-L, Botes M, Gooden A, Van Harmelen J, Shozi B. The multidimensional legal nature of personal genomic sequence data: A South African perspective. Frontiers in Genetics. 2022.

See also

Thaldar DW, Shozi B. The legal status of human biological material used for research. South African Law Journal. 2021.

Thaldar DW. Why POPIA does not apply to DNA. South African Journal of Science. 2021.

Funding

This episode 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 Harnessing Data Science for Health Discovery and Innovation in Africa (DS-I Africa) program. The content of this podcast is solely the responsibility of discussants of the podcast and does not necessarily represent the official views of the U.S. National Institute of Mental Health or the U.S. National Institutes of Health.

In 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:

1. The ‘public’ can refer to any community in South Africa,
2. such a community must benefit as a collective
3. the benefit to the community can be indirect, and can coincide with direct benefit to an individual or a smaller section within the community.

However, the way in which public interest has been interpreted by the Information Regulator deviates from these well-established criteria. This deviation by the Information Regulator is problematic and should be rectified.

Further reading

Thaldar DW. Research and the meaning of ‘public interest’ in POPIA. South African Journal of Science. 2022.

See also

Thaldar DW, Townsend B. Exempting Health Research from the Consent Provisions of POPIA. Potchefstroom Electronic Law Journal. 2021.

Townsend BA, Thaldar DW. Navigating uncharted waters: biobanks and informational privacy in South Africa. South African Journal of Human Rights. 2019.

Thaldar DW, Townsend B. Protecting personal information in research: Is a code of conduct the solution? South African Journal of Science. 2021.

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 Harnessing Data Science for Health Discovery and Innovation in Africa (DS-I Africa) program. The content of this podcast is solely the responsibility of discussants of the podcast and does not necessarily represent the official views of the U.S. National Institute of Mental Health or the U.S. National Institutes of Health.

We aim to engage in topical health law and ethics research and teaching from a uniquely South African perspective.

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, open-identity gamete donation would be lawful in SA and can be offered to the public by South Africa gamete banks and gamete donation agencies.

Further reading

Thaldar DW, Shozi B. Is open-identity gamete donation lawful in South Africa? South African Medical Journal. 2022.

See also

Thaldar DW, Shozi B. South Africa’s latest medically assisted reproduction draft regulations: close, but no cigar. Tydskrif vir die Suid-Afrikaanse Reg. 2022.

Thaldar DW. The in vitro embryo and the law: The ownership issue and a response to Robinson. Potchefstroom Electronic Law Journal.

Shozi B. Something old, something new: applying reproductive rights to new reproductive technologies in South Africa. South African Journal of Human Rights. 2020.

Thaldar DW. Egg donors’ motivations, experiences, and opinions: A survey of egg donors in South Africa. PLOS ONE. 2020.

In 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 genetic link requirement has previously been the subject of a constitutional challenge that resulted in a divided Constitutional Court bench that rejected the challenge with a seven-to-four majority. This was an injustice to infertile persons. The genetic link requirement is now again being challenged in a new lawsuit. The new lawsuit presents an opportunity for this injustice to be rectified, and the equal rights of infertile persons to be vindicated.

Further reading

Thaldar DW. Infertility: ConCourt must right its egregious wrong. Sunday Times, 24 July 2022.

See also

Thaldar DW. The Constitution as an Instrument of Prejudice: A Critique of AB v Minister of Social Development. Constitutional Court Review 2019.

Thaldar DW. Post-truth jurisprudence: the case of AB v Minister of Social Development. South African Journal of Human Rights. 2018.

Shozi B. Something old, something new: applying reproductive rights to new reproductive technologies in South Africa. South African Journal of Human Rights. 2020.