How far should we go with gene editing in the pursuit of the ‘perfect’ person?

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He Jiankui’s name is not listed as a registered delegate for the Third International Summit on Human Genome Editing, which will be held at the Francis Crick Institute in London next month. But the Chinese scientist will be disgraced in the minds of most of the people present. He will be a ghost at the feast of science.

Jiankui was responsible for one of the most controversial actions in the history of modern science – as demonstrated at the previous world genome editing summit, held in Hong Kong in 2018. In front of stunned delegates, the researcher, who was based at South China University at the time. of Science and Technology in Shenzhen, announced that he had altered the genetic makeup of three young girls to make them resistant to HIV. This modification – made when they were embryos – could then be passed on to future generations.

The experiment is unprecedented in modern genetics and was deemed unethical by the Chinese authorities. Jiankui was jailed for three years later, although his influence at next month’s science summit will still be profound, said Professor Robin Lovell-Badge, organizer of the upcoming summit in London.

“We will discuss what has happened to the three children whose physiology he may have altered through genome editing,” said Lovell-Badge, who also chaired the session where Jiankui revealed his unusual biological intervention. “We will also have presentations about the changes that have taken place in China in terms of law and ethics that govern gene editing. It is clear that substantial changes have taken place – for the better.

“And it’s important that these questions are raised. Genome editing has enormous power to benefit people but we should be transparent about how it is being tried and tested before the technology is implemented.”

Jennifer Doudna of the University of California, Berkeley, and Emmanuelle Charpentier, of the Max Planck Institute for Infection Biology, edited the genome in Berlin. Their research was rewarded in 2020 when the two were awarded the Nobel prize in chemistry for “creating a technology [that] he revolutionized the molecular life sciences,” in the words of the Royal Swedish Academy of Sciences, which made the award.

The technique developed by Doudna and Charpentier is called Crispr-Cas9 and acts like a pair of molecular scissors that can cut a strand of DNA at a specific location. In this way, scientists can change the structure of genes in plants, animals and humans and, in turn, induce changes in physical characteristics, such as eye color, and disease risk. There is no introduction of genes from other organisms, a crucial difference from previous forms of genetic manipulation.

Scientists are now looking at genome editing to develop new medical treatments, for example by making changes in individuals with diseases. Candidates include the inherited condition sickle cell anaemia, in which a single gene defect affects the production of hemoglobin and has serious consequences for anemic patients as their bodies are starved of oxygen.

American biochemist Jennifer Doudna, left, and French microbiologist Emmanuelle Charpentier, who won the 2020 Nobel prize in chemistry for developing a genome editing method similar to 'molecular scissors'.

American biochemist Jennifer Doudna, left, and French microbiologist Emmanuelle Charpentier, who won the 2020 Nobel prize in chemistry for developing a genome editing method similar to ‘molecular scissors’. Photo: Alexander Heinl/AP

By removing a person’s stem cells and then genetically editing them so that they start producing fetal hemoglobin – a process that is normally turned off at birth – red blood cells can be put back into their body, according to scientists. Trials are already being carried out at some centres.

In addition, doctors and researchers are exploring ways to use genome editing to combat muscular dystrophy, cancer, diabetes, certain types of hereditary blindness, and many other debilitating conditions that have previously eluded attempts to heal them. At next month’s summit, hundreds of delegates will gather to hear the latest developments.

Other experts are looking further into the future. One idea is to change the physiology of astronauts so that they are better protected from radiation and the effects of weightlessness, which is invaluable for travel to Mars and beyond.

“You could also think about modifying liver enzymes so that men and women can rid their bodies of toxins used in chemical warfare, or to make changes that make them more resistant to biological weapons,” said Lovell-Badge. “That’s the kind of human enhancement that military researchers are thinking about now.

“You could also think of modifying humans to see in the infrared or ultraviolet range, as some animals can. Such improvements would be ideal for troops fighting at night or in other hostile conditions.”

How long society will accept such human enhancements is a different matter – something that will be tackled at a separate event at the Francis Crooked Institute. A public exhibition entitled Short + Paste, will explore what changes can be safely made to humans using genome editing technology; which ones should be rated as priorities, and which ones might be considered morally unacceptable and could not be explored in the future.

“Genome editing tools have enormous potential to improve human health and the world around us, but like all new technologies, they raise ethical questions and concerns,” said Ruth Garde, the company’s curator. Cut + Paste, which opens this week. “The public doesn’t know much about these techniques at the moment. Cut + Paste will allow visitors to explore and reflect on the ethics of genome editing through a series of interactive experiences.”

The exhibition will cover all aspects of genome editing, including its use to improve crops and farm animals, although the main focus will be on its impact on humans, as will next month’s international summit. “It’s easier to imagine genome editing ‘enhancing’ human traits,” Garde said. “Cut + Paste it asks visitors what does ‘improve’ mean? What is a ‘desirable’ trait? And who decides that?”

Visitors will be asked to consider a range of uses for genome editing: to combat diseases such as malaria by using the technology to make mosquitoes infertile; improve human capacity; and make physiological changes that will be passed down through the generations. “It’s important, we invite visitors to tell us what they think of these ideas,” Garde said.

Chinese scientist He Jiankui speaks at the Second International Summit on Human Genome Editing in Hong Kong in 2018.

Chinese scientist He Jiankui speaks at the Second International Summit on Human Genome Editing in Hong Kong in 2018. Photo: Anthony Wallace/AFP/Getty Images

These issues will also be discussed closely at the summit. “Genome editing for sickle cell anemia has great potential but is also very expensive,” said Lovell-Badge. “Treatment for one person could cost a million dollars. However, the disease is most prevalent in Africa, where people can afford the least expensive medication. So are we in danger of creating even greater health divides between developed and developing nations? It is a vital concern.”

The rogue activities of Jiankui, who has since said he acted “too quickly”, will add further frisson to the discussion. “Jiankui is now out of prison and running a lab again, in Beijing,” Lovell-Badge said. “He says he’s going to focus on gene therapy to treat diseases like muscular dystrophy. And that scares me because he’s not a biologist. He knows very little about the disease.”

As for the motivation for Jiankui’s actions in the past, the scientist has since revealed that infection with HIV can debilitate people. He wanted to get around that. “He chose to try to make changes to the CCR5 gene that have naturally occurring variants that can protect against HIV. In this way, he hoped to create genetic protection,” said Lovell-Badge.

“But experiments have also shown that in about 20% of cases these genome editing changes can cause substantial rearrangements of a person’s genome, which is extremely dangerous. It may cause cancer. This shows why it is so important that we take this technology forward with care.”

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