Why the idea of genomic sovereignty should be abandoned

June 30, 2023June 30, 2023 ~ Donrich Thaldar

The idea of genomic sovereignty entails that a nation state should control the genomic resources found in its territory as a national asset. This is established international law in the context of non-human genomic resources. However, some have argued that it should also be applied to human biological samples and genomic data. This raises some serious human rights concerns. In Mexico, the idea of genomic sovereignty was indeed applied in public policy on human genomic data. In our recent article, Dr Faith Kabata and I compare Mexico’s public policy experiment with a different approach, namely that of Finland. In contrast with the state-centred nature of genomic sovereignty, the approach adopted by Finland embraces private ownership of genomic data by local biobanks, subject to control of such data by the individual data subjects themselves. We suggest that this approach is more promising than genomic sovereignty, as it better aligns with the rights of individuals — in particular their right to participate in and benefit from scientific progress and its applications.

Who would own the HeLa cell line in South Africa?

June 8, 2023June 8, 2023 ~ Donrich Thaldar

The HeLa cell line was created in 1951 from a biopsy sample removed from a cancer patient, Henrietta Lacks, at Johns Hopkins Hospital in the United States. Over the past 70 years, the HeLa cell line was used in countless health-related innovations, ranging from the polio vaccine in the 1950s to studying the human genome, and more recently the COVID-19 vaccines. The problem, however, is that Henrietta Lacks’ consent was never obtained to use the biopsy sample for research purposes. Although the actions that took place were accepted practice 70 years ago, society’s values have since changed. As such, the HeLa cell line has become controversial. In 2021, the descendants of Henrietta Lacks sued a well-known biotechnology company for the profits it made from the HeLa cell line. Who owns the HeLa cell line? What would be the legal position if this happened in South Africa? In this article in the Journal of the Law and Biosciences, I answer this question.

Toward an open access genomics database of South Africans

May 28, 2023May 28, 2023 ~ Donrich Thaldar

Genomics research holds the potential to improve healthcare. Yet, a very low percentage of the genomic data used in genomics research internationally relates to persons of African origin. Establishing a large-scale, open access genomics database of South Africans may contribute to solving this problem. However, this raises various ethical concerns, including privacy expectations and informed consent. In this article, Amy Gooden and I show how the ethics landscape can indeed be navigated in a responsible way to establish a large-scale genomics database of South Africans that is open access.

South Africans have their say about heritable human genome editing

May 23, 2023May 23, 2023 ~ Donrich Thaldar

My research group conducted a public engagement study on heritable human genome editing (HHGE) among South Africans. This study was the first public engagement study on HHGE in Africa. Read more about the results of this study in our article published the international top journal PLOS ONE.

One thing was clear: The participants did not view the human genome as sacred. I reflect on this in this post on the Bill of Health blog of the Petrie-Flom Center at Harvard Law School. Instead, the participants viewed HHGE—once it is proven to be safe and effective for use in humans—as a practical tool to bring about valuable social goods. Interestingly, the participants proposed that the South African government should actively invest resources to ensure everyone has equal access to HHGE technology for these purposes. Dr Bonginkosi Shozi and I analyse this aspect in more detail this article recently published in the prestigious American Journal of Bioethics.

Understanding genomic data from a legal perspective

November 11, 2022 ~ Donrich Thaldar

How does the law conceive of genomic data? Can one own genomic data? And what about privacy rights in genomic data? To answer these questions, my research group recently published a pioneering article in Frontiers in Genetics. This is the first time that the legal nature of genomic data is analysed from a South African perspective.

You are also welcome to watch a video summary of the article.