There continues to be much debate over whether genetically modified embryos should be an acceptable practice in society and the viewpoints vary radically between countries, communities and cultures. Just last month, China handed down a prison sentence and fines to biophysicist He Jiankui and two of his colleagues after he was found guilty of illegal medical practices and jailed for three years. This followed his public announcement in December 2019 that he had, with the help of two embryologists, “created the world’s first gene-edited babies.” His claims attracted much negative attention and led to his prosecution at a Shenzhen court in December.
This case has led some scientists and ethicists to question the Chinese legal process for “lacking appropriate information about altered children.” It has been noted that China is lagging behind some other countries with regards to its views on genetic modification and there is much positive exploratory work taking place in the area of genetic modification which aims to tackle some of the most challenging genetically-related health issues affecting humans. But this work remains exploratory in nature as the future implications of altering genes in humans are unchartered territory and as such, are approached with caution, even by the most experienced of geneticists.
The courts revealed that Jiankui and his team, who also received lesser sentences, did not have the appropriate certifications to practice medicine and state news agency, Xinhua said, “in seeking fame and wealth, deliberately violated national regulations in scientific research and medical treatment. They’ve crossed the bottom line of ethics in scientific research and medical ethics.”
Jiankui stated that his motivations behind his actions were driven by his interest in tackling HIV. The modified genes were designed to promote the resistance of HIV in the descendents of the babies and he sought out couples where only the father was infected with HIV, with the mother being clear. The couples were offered IVF in return for taking part.
He was extremely public about this work, speaking about his aspirations at the International Summit on Human Genome Editing in Hong Kong, China. He explained that he was committed to sparing future babies from becoming infected with HIV later in their lives. He had a vision that this could be used to reduce the prevalence of HIV and AIDS in much of Africa, where there is often intense discrimination of those inflicted with the disease.
That said, many remain skeptical and have accused him undertaking the work for his own fame than for the good of future humanity. It has also been highlighted that it was the way in which the accused had conducted the process which was worthy of the harsh sentence it attracted. It has been stated that the trio forged ethical review documents and knowingly misled the doctors responsible for implanting the gene-edited embryos into two women, resulting in the birth of twins for one of the mothers. It was these actions which the court deemed were “a direct and deliberate violation of national regulations on biomedical research and medical ethics.”
In addition, medical experts have also questioned the validity of Jiankui’s rationale, arguing that there are much more effective ways of preventing HIV infections and that his approach simply put babies at risk of the gene editing process, providing them with little benefit in return.
They have also indicated that similar punishments would have been likely if he had carried out the same practices elsewhere, such as in the UK for example. Furthermore, it has been duly noted that stringent punishments do need to be in place in order to prevent the risks of rogue scientists taking matters into their own hands and making genetic modifications which could have long-standing consequences for the affected babies and even their future generations.
Indeed, questions have been raised over the future development of the children affected by Jiankui’s work is yet to be seen, and there is no doubt that the children born through this work, including a set of twins, are likely to be monitored in the coming years.
On this topic, Fyodor Urnov, a researcher at the University of California, Berkeley, told MIT Technology Review that although Jiankui had tried to recreate the CCR5 mutation already present in some human and leads to an immunity to HIV, he had in fact “created new mutations in the target gene, and apparently elsewhere in the genome, too, the consequences of which are unknown.”
What is clear is that the general consensus is that Jiankui acted prematurely and that work of this kind required far more research and preparation before it was ever practiced on human embryos. Further work needs to be conducted in the areas of standards, regulatory pathways and appropriate means of governance and these issues are being considered by the Academies Commission and by a WHO committee, who will return their findings later this year.