Ethicists and researchers have expressed outrage at He Jiankui’s use of an experimental gene-editing technique on embryos that were allowed to become living children. But should medicine take bolder risks if it means saving lives?
‘Illegal medical practices’
Dr. He was jailed for three years for ‘illegal medical practices’ and also fined ¥3million (about $425,000) late last month after he edited human embryos, implanting them in a woman’s womb, and allowed the pregnancy to lead to the birth of twins.
Dr. He claims he was attempting to confer immunity to HIV on the children, who were created using in-vitro fertilisation (IVF) from a HIV-positive father and a HIV-negative mother. Critics have argued that there are better ways of solving the problem than by gene editing.
Moreover, while deleting the specific gene (CCR5) could confer protection against HIV infection, CCR5 plays an important role in our immune systems and could leave those without it open to other kinds of infection. There is also a risk that other ‘off target’ changes have been made in the genomes of the treated children.
In short, it isn’t clear that the children born after gene editing would benefit from the procedure, the usual justification for a medical intervention. Researchers pointed out that there are numerous serious illnesses caused by a single gene that could have been the focus of He’s efforts, where there would have been clear benefits for the children born as a result.
There are also critics who believe that He was seeking the glory of being the first person (that we know of) to edit embryos and produce children. The fact that He had his own public-relations team working with him suggests to some observers that he saw the whole idea as an opportunity to promote himself, or at least Chinese science. Sadly for He, his superiors were far from delighted with his efforts, particularly as his work only reinforced the prejudice that China is an unregulated ‘Wild West’ for research.
Nonetheless, for all the attacks on Dr. He and his colleagues, an important milestone has been reached. We now know that it is possible to edit the human genome in embryos fairly accurately and efficiently (the technique is still not perfect), then allow those embryos to be gestated and born.
We have also had no reports to indicate that the children are anything other than healthy. We will, of course, have to wait and see if the children develop into normal, healthy adults.
With the technology becoming cheaper, it is highly likely that we will see more of these cases in the future. It will be possible for companies to provide gene editing as a service to prospective parents who want to avoid having their children suffer from inherited conditions, for example.
So how should we regulate these things? For years, this technology has been exclusive to elite research institutes and universities subject to government regulation. Undoubtedly, many researchers are frustrated by the limitations put on them by these regulations. Could the benefits of genome editing become available far more quickly if some of those shackles were taken off?
Many areas of science have been overshadowed by the precautionary principle in recent decades. Rather than speeding ahead with new developments, it is argued that evidence of harm should not be needed in order to impose regulations or even bans on particular types of technology. A high-profile example of this is the way the EU has effectively banned genetically modified crops even when they have been used very successfully in other parts of the world. Should the whole world be held back by the risk aversion of scientists in the wealthy West? Who should decide about the regulations we implement?
Perhaps we worry too much about the safety of new techniques and ignore the threat from not proceeding faster. How many more children, for example, will suffer from congenital diseases that could have been prevented if we were prepared to take more risks? There were many missteps and failures in the development of surgery, the treatment of cancer and much more. We should avoid deliberately abusing other people in trying to develop treatments, even if in the long run they will benefit many people, but perhaps more courage is required now.
These are not easy issues to resolve and have been fought over by far greater ethicists than me. But if we simply draw the conclusion from He Jiankui’s work that such research must be banned outright – or if scientists themselves shy away from exploring the limits of what is possible because of his punishment – we could end up hurting many more people than we protect.
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The statements, views and opinions expressed in this column are solely those of the author and do not necessarily represent those of RT.