I am pleased to announce that I have been admitted as amicus curiae (friend of the court) in the case of De Jager v Netcare. This case deals with the constitutionality of collecting health data through surveillance, a subject that holds significant implications for how personal information, particularly health data, is protected and processed in our legal framework.

The De Jager v Netcare case is a landmark moment in the evolution of health data governance in South Africa. The court’s decision will have far-reaching implications for how personal health data is collected, processed, and protected, particularly in the context of surveillance. It will set a precedent for the interpretation and application of POPIA in cases involving the intersection of privacy rights and judicial processes.

This case also raises critical questions about the balance between the right to privacy and the need for transparency in judicial proceedings. As our society becomes increasingly data-driven, ensuring that our legal frameworks keep pace with technological advancements is essential. The court’s judgment in this case will be instrumental in shaping the future of privacy rights and health data governance in South Africa.

I am honoured to contribute to this important legal discourse and look forward to participate in the court’s deliberations on these crucial issues.

In today’s data-driven world, effective management and governance of health data are more crucial than ever. The research community is continuously evolving its strategies to ensure that data is shared safely, ethically, and efficiently. Two recent articles that I had the privilege of co-authoring—The Anatomy of a Data Transfer Agreement for Health Research and Enhancing Data Governance in Collaborative Research: Introducing SA DTA 1.1—address these pressing issues from complementary perspectives.

Understanding the foundation: anatomy of a data transfer agreement

Data transfer agreements (DTAs) are at the heart of any responsible data-sharing framework. In The Anatomy of a Data Transfer Agreement for Health Research, which I co-authored with Lee Swales and Amy Gooden, we delve into the essential components of DTAs that facilitate the lawful and secure transfer of health data. Our research involved a comprehensive scoping review of 24 publicly available DTAs, focusing on the key clauses that define these agreements, such as data ownership, intellectual property, confidentiality, and dispute resolution.

What became evident through our analysis is that while the specific details of DTAs may vary depending on jurisdictional and institutional needs, there are fundamental elements that should be present in all agreements. The importance of clarity and precision in these clauses cannot be overstated, as they ensure that all parties involved in data sharing have a clear understanding of their rights and obligations.

However, it is equally clear that there is no one-size-fits-all template for DTAs. Each agreement must be tailored to the unique circumstances of the research it governs. This tailored approach helps to navigate the complex legal landscape surrounding data protection and intellectual property, providing a solid foundation for the ethical and efficient transfer of data.

Building on the foundation: introducing SA DTA 1.1

Building on the insights from our analysis of DTAs, Enhancing Data Governance in Collaborative Research: Introducing SA DTA 1.1, which I co-authored with Marietjie Botes, Lee Swales, and Paul Esselaar, represents a significant advancement in the specific context of South African health research. The original SA DTA was designed to provide the South African research community with a robust framework for data transfer, and the feedback we received led to the development of an updated version, SA DTA 1.1.

SA DTA 1.1 addresses some of the more complex issues that arise in collaborative research, particularly around the ownership and management of ‘inferential data.’ This concept, central to the new version, refers to the data generated through analysis, which creates new knowledge or hypotheses not explicitly contained in the original data. By clearly defining when and how ownership rights to inferential data are established, SA DTA 1.1 provides a framework that not only protects the interests of all parties involved but also fosters greater collaboration by reducing the potential for disputes.

The practical application of SA DTA 1.1 is demonstrated through two case studies in our article, illustrating how these updated guidelines can be applied in real-world research scenarios. Whether in a partnership between two universities or a collaboration between a university and a pharmaceutical company, the clarity provided by SA DTA 1.1 ensures that all contributions are fairly recognised and protected.

Why these articles matter

Both of these articles reflect the growing importance of data governance in health research. As we move further into the digital age, the ability to manage and share data responsibly is becoming a cornerstone of scientific progress. Whether you are a researcher, legal professional, or data manager, understanding the nuances of DTAs and the implications of data governance frameworks like SA DTA 1.1 is crucial.

I am proud to have contributed to these discussions and hope that these articles provide valuable insights and practical guidance for those navigating the complex world of data transfer and governance in health research.

These two articles represent significant contributions to the field, and I am excited to see how they will influence the future of data governance in health research.

In today’s world, science plays a role that is undeniable and essential. It serves as a cornerstone for advancements in society, ensuring that we grow, innovate, educate, develop, and thrive. As asserted by the International Science Council (2020), science remains ‘an indispensable contribution to the human endeavour’. 

However, for science to genuinely succeed and impart its benefits to society, its knowledge must be as accessible as possible. Yet, a pressing concern that echoes within the scientific community is the seclusion of scientific findings, which can limit its potential benefits to the wider public. Recognising this, the concept of open science has gained traction, championing the notion of democratising scientific knowledge. Philosophers like Holbrook (2019) emphasise that open science aims to bridge the rift between science and society, providing an inclusive platform where everyone can partake in the wonders of scientific discoveries.  

The digital era, especially the power of the Internet, magnifies this potential. The Internet can be an enabler, widely dispersing knowledge without barriers. Steger and Hantho (2019) keenly describe open science as a ‘no-barrier approach to scientific research’, advocating for the elimination of hurdles, such as article paywalls, that can significantly stifle scientific growth.  

Recognising this shift, South Africa’s Department of Science and Innovation unveiled its Draft National Open Science Policy last year. This draft policy aims to promote the ethos of open science. It stands in stark contrast with another draft policy that also deals with data, namely the Draft National Policy on Data and Cloud developed by the Department of Communications and Digital Technologies. In a recent article that I authored with Amy Gooden and Michaela Steytler, we highlight the various ways in which these two policies differ, and suggest that the approach adopted by the Draft National Open Science Policy is better aligned with South Africa’s commitment to being an open and democratic society.  

However, we also pinpoint three aspects of the Draft National Open Science Policy that warrant further attention:  

1. Constitutional alignment: The draft policy must be firmly anchored within the South African Constitution, emphasising the connection between open science and the freedom of scientific research. 

2. Clarity on data ownership: The draft policy currently omits the critical issue of data ownership, a gap that needs addressing. Here we are not referring to intellectual property rights, but to ‘normal’ ownership of data by the data generator. 

3. Human vs. non-human genetic data: A clear demarcation between these types of data is essential and should remain intact. Trying to apply the legal rules related to benefit-sharing of non-human genetic data to human data would infringe dignity—moreover, it would be unlawful.

To ensure the success of open science in South Africa, a holistic engagement with constitutional law, property law, and international law is paramount. We invite you to read our full article! 

As is the case around the globe, South African fertility clinics face an ever-expanding problem: what to do with the growing number of surplus cryopreserved embryos. Fertility clinics remain hesitant to destroy these abandoned embryos, partly because of concerns about the legal ramifications. This article clarifies the legal position in South Africa. In sum, fertility clinics cannot deem embryos as abandoned and discard them if fertility patients fail to respond to a notice that the embryo storage agreement is about to expire. However, if there is non-payment for embryo storage by fertility patients and the fertility clinic has informed the fertility patients of other options available to them with respect to their embryos, and there is still no response, the fertility clinic is legally entitled — and legally obliged — to discard the embryos.

In our article, Aliki Edgcumbe and I suggest practical steps that fertility clinics can take to ensure that they act lawfully when entering into embryo storage agreements, and later when faced with a situation where fertility patients fail to pay for the storage of the embryos.