Open Genomics and Privacy: New Case Law in South Africa Affirms a Key Principle

by Donrich Thaldar

As the era of genomic medicine dawns, large-scale genomics projects are becoming increasingly central to health care advancements. Projects like FinnGen in Finland, the UK Biobank, and the All of Us initiative in the United States are charting new frontiers in precision medicine, enabling researchers to unlock the genetic codes underlying a wide array of diseases. These initiatives collect genetic data from hundreds of thousands of individuals, providing an invaluable resource to identify disease markers and tailor medical treatments to individuals’ genetic makeup. Such projects are not only pushing the boundaries of medical knowledge but are also laying the foundation for a future where treatments are more effective and personalized.

However, in the Global South, large-scale genomics projects are far fewer. Qatar has taken strides with its own Qatar Genome Program, but examples are still limited across Africa and other regions, where genomics research is often constrained by funding, infrastructure, and representation issues. In Africa, where genetic diversity is high but research representation has historically been low, the need for such projects is critical. Without local genomics data, the benefits of precision medicine may largely bypass African populations, further exacerbating global health inequities.

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3D illustration of a Renaissance marble statue of Zeus, king of the gods, who was also the god of the sky and thunder. Zeus in Greek mythology is known as Jupiter in Roman mythology.

Data Pseudonymization and POPIA

By Donrich Thaldar

Just as Zeus, the King of the Gods in Greek mythology, assumed various forms to conceal his true identity, so does modern data often undergo transformations to mask its origins. Zeus could become a swan, a bull, or even golden rain to achieve his purposes — all while maintaining his essence. Similarly, pseudonymization techniques aim to alter data enough to protect individual privacy without losing the core information necessary for research or analysis. This entails replacing data subjects’ identifying information in a dataset with unique codes, while keeping another dataset that links these data subjects’ identifying information with their allocated codes. Therefore, just as Zeus’ transformations were sometimes seen through by keen eyes, pseudonymized data can be re-identified by those having access to the linking dataset.

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Double exposure of abstract digital world map on laptop background.

Harmonizing Africa’s Data Governance: Challenges and Solutions

By Donrich Thaldar

The establishment of a single data market across African nations promises significant socio-economic advantages, facilitating unrestricted and fluid data exchange. This concept has captured the attention of political leaders and has been prominently featured in the African Union’s (AU) Digital Transformation Strategy for Africa, as well as the AU’s Data Policy Framework. Further, entities like Smart Africa are actively championing the cause of creating an African single data market.

To transform the vision of an African single data market into reality, and to unlock its potential benefits for the continent’s populace, establishing regulatory alignment is paramount. This necessitates the integration of markets, the implementation of uniform online payment systems, the standardization of taxation and duties, and cross-border trade facilitation. This article delves into two critical legal dimensions of cross-border trade facilitation: data privacy and data ownership.

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open door to the sky.

Open Science and Its Enemies: Policy Initiatives in South Africa 

By Donrich Thaldar

Within South Africa’s science policy landscape, two recent proposals, the Draft National Open Science Policy and the Draft National Policy on Data and Cloud, highlight an ideological struggle between individual freedom and central control by the state.

This article discusses both of these proposals, the strengths and weaknesses of their approaches, and their concordance with broader social and political goals in South Africa.

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rendering of luminous DNA with gene being removed with forceps.

Bioethics Experts vs Ordinary South Africans on the Governance of Human Genome Editing

By Donrich Thaldar

On the issue of human genome editing (HGE), attitudes between bioethics scholars and the general public diverge, as highlighted by my team’s findings from a recent deliberative public engagement study.

In the study, which assessed views on heritable HGE among South Africans, participants adopted a pragmatic risk-benefit approach to specific applications of heritable HGE. This rational pragmatism of the study participants was informed by values such as improving quality of life, equality and (universal) access to healthcare, moral autonomy, and innovation. By contrast, we might characterize bioethics experts as raising principled objections to heritable HGE as a technology, such as Jürgen Habermas’s articulation of the “right” of the prospective child to an “unaltered genome.” (Not one study participant relied on this objection during the more than 20 hours of deliberations.)

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red and green silhouette illustration of women having a conversation.

The Not-So-Sacred Human Genome: What South Africans Think About Heritable Human Genome Editing

By Donrich Thaldar

South Africans have issued a clarion call for research to move ahead on health-related applications of heritable human genome editing (HHGE), finds my research group’s new public engagement study — the first of its kind in Africa.

The study engaged a diverse group of 30 South Africans in three evenings of deliberations on the governance of HHGE. The methodology entailed (a) facilitated deliberation between the participants with the aim of finding consensus, although consensus was not forced; and (b) ensuring well-informed deliberations by providing participants with balanced, internationally peer-reviewed information about HHGE and the ethical arguments relating to it. The results of these deliberations are summarized briefly below.

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Genetic engineering and digital technology concept.

The ‘Res Nullius’ Construction of Human Genomic Data

By Donrich Thaldar

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. This opens the door for different persons to have rights originating in different legal domains with respect to the same genomic data.

To determine who has rights with respect to a particular person’s genomic data, the rules of each relevant legal domain must be applied. The application of these rules to genomic data may be relatively straightforward in some domains, but in property law — which is relevant in determining ownership of genomic data — it is often more complicated. Only a handful of jurisdictions have specifically legislated on the ownership of genomic data. In the absence of such specific legislation that provides who owns genomic data, general property law rules must be applied. (In common law legal systems, and some mixed legal systems where legislation is absent, this would entail resorting to the jurisdiction’s common law.) However, given the novelty of applying property law rules to genomic data, it is not always obvious which of the general rules would apply. In this post, I will share some of my research group’s thinking in this regard. Although our thinking is based in South African law, many of the principles are shared with other legal systems.

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microscope for in vitro fertilization process close up. . Equipment on laboratory of Fertilization, IVF.

Building a Progressive Assisted Reproductive Technology Law in South Africa

By Donrich Thaldar

In July 2022, a legal earthquake hit the South African fertility healthcare sector: The Pretoria High Court struck out the statutory ban on non-medical preimplantation sex selection.

Preimplantation sex selection for non-medical reasons is controversial around the globe, and explicitly banned in several prominent countries, such as Canada and the United Kingdom. However, in most countries, such as the United States, it is not regulated through statute. How did South African law arrive at this dramatic juncture?

In South Africa, over the course of the past decade, a steady stream of judicial decisions on assisted reproductive technology (ART) built a progressive body of case law (notwithstanding one noteworthy exception).

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