The gene-editing pandora’s box
Last week, a Chinese scientist once again sparked an international outcry on ethics and legality. This time, the issue regards transparency over the potential use of human gene-editing technology. He Jiankui, an associate professor at the Southern University of Science and Technology in Shenzhen, claimed on Monday on a online video that he had created the world’s first genetically-edited babies whose DNA is resistant to HIV infection.
The scientific community was furious, condemning Mr He for violating ethical standards.
His announcement was also highly unorthodox — a YouTube video. And not to mention, there is no scientific paper to back up the claim nor does his university have any knowledge regarding his tendentious research.
Human gene-editing of embryos is highly controversial, especially the introduction of CRISPR-Cas9 — a powerful gene-editing technique that allows scientists to remove and replace DNA strands more accurately and cheaply in a matter of days, rather than months.
Human gene-editing has provoked stimulating discussions and responses around the globe given its unknown capabilities or consequences. This has resulted in heavy regulation or a ban altogether in many countries.
China, however, has invested heavily into turning into a gene-editing powerhouse. Last year, it invested a record 1.76 trillion yuan (8.3 trillion baht) on research and development on the technology.
In 2015, a group of Chinese scientists were the first to use CRISPR-Cas9 to edit genes in the human embryo, which was quickly ensued by international outcry. However, the edited embryo were not meant to be born as babies, unlike the ones from Mr He’s experiment.
This year, Unesco has called for a temporary ban on human genetic-editing and instigated for public debate on the matter.
In the case of Mr He’s experiment, the question now rests on the future of the two twin girls and whether they will recieve proper treatments and welfare as the non-edited children. While Mr He claims he would monitor them for the next 18 years, he was unable to detail how the edited genes will affect the girls’ upbringing.
When it comes to any breakthrough technological advancement, the issue usually is that governments and regulatory bodies are not always prepared, which could either result in an extreme spectrum of loose laws or a strict ban.
But genetic modification of human DNA can not be regulated like Airbnb or Uber. Research and development into genetic modification requires an extremely precautious technique given that hereditary modification could be transmitted to edited embryos and future generations.
Countless topics will be raised and debated upon: intellectual property rights, international trade law, consumer demand, cultural beliefs or stigma and public fundings allocated to research and development, to name a few.
The regulatory framework surrounding the biotechnological development will determine whether the technology will be commercially available for the public; therefore, it should be looked into through the lens of various stakeholders from governments to the public to private industry.
Legislation is seen to be more justifiable given that it comes from experts and elected representatives;,however, we have seen today that regulations have become more and more distanced from public sentiment. A blunt instrument that is extremely rigid and could sometimes be ignorance to the broader population.
Legislation that stems from a close-door discussion can never take into account all dimensions from different viewpoints. Perhaps Supreme Court Justice Louis Brandeis has rightly said: “Sunlight is said to be the best of disinfectants”. Through the involvement of the public, the end result will be more thorough, driving the decision that is agreeable to the larger public.
There is, however, no one-size fit all approach when it comes to regulations on biotechnology.
In the United States, for instance, the country is renowned for GMO plants and animals while the opposite is true for biotechnology related to humans. Similar with the United Kingdom where any product involving embryos or human fertilisation is being strongly monitored.
In Japan, the government categorises clinical trials into high, medium and low risks to initiate the appropriate regulatory pathway. Singapore also has this similar risk-based approach with added layers of possible combination with other biologic or medicine technologies.
While genetic modification of human DNA could revolutionise the history of medicine, disease and humankind, the outcome still rests in the pandora box and therefore should involve a public hearing for the greater good of humankind.