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.

Blood is thicker than water, but is it thicker than ink?

November 10, 2022 ~ Donrich Thaldar

Is a sperm donor agreement valid and enforceable in South African law? Can a sperm donor sue for parental rights and responsibilities in respect of a child that was conceived with his sperm, despite the provisions of a sperm donor agreement? And if so, is the sperm donor’s genetic link with the child legally relevant? In this article in the Stellenbosch Law Review, we answer these questions. It turns out that ink trumps blood – not the ink in the sperm donor agreement, but the ink in the law books.