South Africa recently revised its health research guidelines to allow gene editing, aimed at creating genetically modified children. It became the first country to allow genome editing, and soon will be able to openly support it, which will lead to the start of a new chapter in health research.
Genome editing has been a controversial topic due to ethical concerns ever since it was first experimented. Especially when it comes to humans, being able to change and modify features such as hair and skin color, height, and many more is thrilling but terrifying at the same time.
Further understanding the current status on gene editing may allow us to better interpret the recent news about South Africa. “Genome editing is a method for making specific changes to the DNA of a cell or organism. It can be used to add, remove or alter DNA in the genome. Human genome editing technologies can be used on somatic cells (non-heritable), germline cells not for reproduction and the ones for reproduction.” says the World Health Organization. Previously, non-heritable treatment methods using gene-editing have been used to cure diseases such as HIV and sickle cell disease. Also called CRISPR, non-heritable genome editing has improved so much that it could put an end to flus including COVID-19.
Non-heritable genome editing and its aims do not lead to big ethical discussions, so it has been successfully used in various diseases’ treatment. However, until recently, none of the countries allowed heritable genome editing. Concerns such as the cost of gene editing and its availability only to the wealthy, determining certain features and disabilities as ‘normal’ or ‘abnormal’ and not being fully able to detect the ‘good’ and ‘bad’ usage of the technology led countries to stay away from heritable genome editing.
The revision on health research ethics guidelines of South Africa happened in May, but just recently, opposing restrictions and debates arose from other countries. Although it has been a few months since the revision, discussions made by scientists arose tremendously within the past few weeks. The common conclusion is that allowing heritable gene-editing in countries comes with fewer rewards compared to the risks and it is not acceptable for clinical use at present.
Another opinion on this topic came from Dr Bonginkosi Shozi. Dr Shozi, a bioethicist and health law scholar at Stanford Law School, California, told Nature, “The updated guidelines should be seen as recognizing the legal reality in South Africa and providing guidance to health-research ethics committees that are cognisant of that reality.” Dr Shozi also shared his opinion by suggesting that gene editing in humans should be regulated and not banned in the piece published in the South African Journal that he co-authored.
One question that comes to mind is, why are South Africa’s health research ethics guidelines apparently pushing the envelope with heritable human genome-editing?
There are cues that let us understand the logic behind this decision. Gene editing has created a remarkable impact on a common disease in South Africa called sickle cell. The disease caused many children to die and non-heritable gene-editing came as a rescue. It treated many sick people and certainly can be a cure. While this indicates South Africa has benefited and is prone to gene editing, it is certainly not the same thing as the heritable version. Heritability indicates that the modifications made on the embryos can be passed onto future generations.
Furthermore, how many people in the country are aware of their country’s new policy regarding the allowance of human gene editing? Has careful attention been given to the use of heritable genome editing, including harms to women, prospective parents, children, society and the gene pool? People alarmed by the revision of guidelines are looking for answers to these questions and many more worldwide.
As stated previously, South Africa has not been fully transparent to the public and the revision was hardly noticeable unless examined thoroughly. Scientists are worried, since South Africa made such a profound change with such minimal public discourse. Considering that it is a very recent development, it is highly likely that it will come with unforeseen consequences that may not be solved, and therefore passed onto future generations uncontrollably.
Scientists are curious to see the consequences of South Africa’s revision of health research ethics guidelines and their impact on other countries’ policies. In time, the outcomes of the revision will be visible and likely cause a new chapter in gene-editing technology to start.
Edited By: Oya Yamaç, Yağmur Ece Nisanoğlu