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
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
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?
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.
Direct-to-consumer genetic testing: Is it lawful in South Africa to take your own buccal swab?
Despite the growing popularity of direct-to-consumer genetic testing, there is not a lot of literature on the topic in South Africa. The limited available research suggests that direct-to-consumer genetic testing is unregulated. However, Amy Gooden and I have investigated this topic and found that direct-to-consumer genetic testing is indeed regulated, and unusually so. The first step in the process – the collection of a saliva sample by consumers themselves – is unlawful on a plain reading of the National Health Act 61 of 2003 and the Regulations Relating to the Use of Human Biological Material. But this is only the beginning of our legal analysis, not the end! Read more here.