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.
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.
South African fertility clinics often include a provision in their consent forms that deals with the disposition of reproductive material (gametes and embryos) after a fertility patient’s death. This practice is problematic as such a provision is not legally valid. If the clinic acts in pursuance of such a provision upon a fertility patient’s death, the fertility clinic may be committing a civil wrong and a crime. But what is the solution? Read more in my article in the South African Medical Journal.
South African gamete banks and gamete donation agencies do not offer open-identity donors, as it is generally believed that donor anonymity is a legal requirement in South Africa. Together with Dr Bonginkosi Shozi, I investigated the veracity of this belief. In our article in the South African Medical Journal, we offer a comprehensive analysis of all the South African statutes and case law relevant to this topic. We conclude that the notion that gamete donors must always be anonymous is mistaken. In actuality, the law provides that gamete donation in South Africa can be anywhere on the spectrum between anonymous and known. Accordingly, open-identity gamete donation is lawful in South Africa and should be offered to the public by South African gamete banks and gamete donation agencies. Read our article here.
While TB and HIV are not a public health concern in many other nations, these diseases remain epidemics in South Africa. Clearly, people in South Africa have good reason for wanting to ensure that their children are not afflicted by these diseases. Heritable human genome editing (HHGE) could potentially offer a solution, but only if research in this area is allowed to proceed. This is why calls for a global moratorium on HHGE research is misaligned with the needs and expectations of South Africans, and raise concerns about ethical imperialism. A better approach to HHGE research is to encourage it within a clear regulatory framework. Read the full argument here.