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The history of science is punctuated by people who went against the orthodoxy of their time. Galileo was hunted down and imprisoned for his belief that the sun was the center of our galaxy. Charles Darwin offended a large part of his Christian peers by proposing the theory of evolution, in direct contradiction to the dominant narrative of creation.
Being a maverick, breaking the rules with passionate conviction, is a quality praised by the fiction we consume and the heroes we idolize, from James Bond. But there are times, in science as in other disciplines, where breaking the rules does not seem heroic. This week's revelation that Chinese scientist He Jiankui has resorted to gene editing to try to confer HIV resistance to babies is one of them.
He avoided codes of practice from his own field to test a gene editing tool called Crispr on two embryos that were then implanted and completed, and are now living children. This individual decision, directly from the theory to the genetic limit, has raised some of the greatest ethical questions of our time.
It's a stunning and deeply problematic moment. In 2015, after the possibilities of Crispr became obvious, scientists who developed the tool, other scientists who use it daily, and a group of dedicated bioethicists said that "we have a lot of people. it should not be used in healthy human embryos until we know more about the consequences. By his own admission, at a conference in Hong Kong on Wednesday, neither the Chinese authorities nor the university itself approved the work.
Mapping the human genome, and the ability to manipulate it later – to create gene therapies for existing diseases, for example – is an example of the most impressive science. Gene editing has already been tested on human embryos, although it has not yet been completed. Nor is it the first time a genetically modified child has been born.
In 2000, a baby had been conceived from the sperm and egg of a group of parents, but from another woman's oocyte components, including mitochondria, which act as "stacks" in cells and contain a tiny number of cells. the 20,000 genes of man. The treatment made the baby resistant to the devastating diseases of mitochondria. Since then, other children, although few, are born using this type of splicing. The UK distributes licenses on a case-by-case basis for the procedure.
What is different in the case It is that the result of this experiment is that two living children can transmit modified genes to their children and to the children of their children. This is a decisive moment: never before has the human "germline" – the DNA passed from human to human through time – been modified by medical intervention.
Never before has the human "germline" – the DNA passed from human to human over time – been altered by medical intervention.
The theory of chaos is illustrated in the most famous way with an example of a butterfly. The insect flaps its wings, causing a vibration so minimal that it could hardly be felt by a near finger. but the effect of training – without anyone knowing how – causes a hurricane on the other side of the planet. Chaos theory warns humans against any manipulation of nature (perhaps most famous in the movie Jurassic Park) because we do not know what the effect will be.
In this case, however, there are some clues. The consequences may be indifferent, good or bad: we may never know it in our lifetime. This is the principle and what it means for future generations – the ability to make gradual but permanent changes without ever resolving all possible ramifications – that makes people so nervous. Akshat Rathi gives a relevant example in another Quartz article:
Consider sickle cell disease, a genetic disease that is sometimes fatal. Its genes, although obviously harmful, have persisted and spread because, although two copies of the sickle cell gene are at the origin of anemia, just one copy to protect against malaria, one of the most deadly diseases in the history of mankind. If we had not been informed of their benefits, the elimination of sickle cell genes would have been a bad idea.
Of course, there are powerful counter-arguments. Science in general and medicine in particular have the principle of "touching nature", testing and testing the world around us again and finding ways to modify it for our own species. Other scientists have pointed out that humans are constantly doing things that can mutate genes – such as smoking or chemotherapy – and pass on mutations to their children. Others point out that our genetic code has little impact on our ultimate evolution in relation to the broad effect of other factors such as parenthood or wealth.
People who have suffered from genetic disorders or who have had children with genetic disorders may well support the "maverick" in this case, considering the scruples of others as the thoroughness of the people who have the luxury of not being personally affected. There is also an argument that if legitimate science does not explore what is possible, the black market could (even if the black market is also capable of recovering legitimate science).
These arguments can be convincing. But his actions of rupture also raise other ethical questions. Since the revelation of what his team has actually done, many questions have been asked as to whether patients participating in the trial had received sufficient information about the nature of what they had been putting on. And all its possible ramifications, known and unknown. He used tools available for new purposes, with potentially far-reaching consequences. he did so in violation of the collective wisdom of his domain; and he may have possibly exploited his patients in the process.
Without engaging in such hysteria, his action always causes deep discomfort.
The hysteria related to genetic modification has already sprung up around crops before mitigating (we regularly grow and eat GM crops). He's cresting around human kids. The idea of creating desirable "designer babies" in which a person somewhere decides what "diversity" looks like is repugnant. And we are afraid, like Frankenstein, of creating monsters without being able to control them. Such fears lead to extreme positions, such as opposition to in vitro fertilization (which does not involve any genetic alteration), or abortion for any reason whatsoever.
Without engaging in such hysteria, his action always causes deep discomfort. First, there is the question of whether he was simply looking for personal magnification: a chance to play God and be seen as playing that role in the history of his field. Was not the step he made necessary?
The answer seems to be no. Modern medicine already has tools to prevent HIV from being passed from parent to offspring. This means that the genetic modifications that He has made, a significant intervention, could not be ethically or scientifically justified. When asked to explain his reasons at a meeting in Hong Kong today, he evaded the issues. It is not known yet how such an experiment could have taken place; what is clear is that the dissemination of information has been carefully orchestrated.
The second question is about choice. With no compulsion, no one can be forced to undergo IVF, abortion, gene therapy or any other medical intervention unless they want to. But to make this decision knowingly, patients need information about what happens before they undergo a procedure or participate in an experiment. The company also has the choice, but the alteration of the germ line removes it. The changes will come into our genetic makeup as a species. There is no return from this point of change.
We ask our scientists to push the boundaries of human knowledge, to make discoveries that change the nature of what we know and what we do with this emerging knowledge. But at the same time, we ask them to self-regulate, follow the guidelines, listen to their peers and the public, to understand where is the limit. It's a delicate balance. We will all be affected over time by the decisions made in He's laboratory. And no one – including the scientist himself – knows how.
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