OUTCRY AT BIRTH OF GENE-EDITED BABIES
▶ Chinese scientist’s breakthrough claim sparks ethical fears about development without knowing the consequences
Claims this week that twin girls with edited genes had been born in China in a world first have stirred up broad and impassioned debate.
The announcement by Dr He Jiankui in Shenzhen of the girls’ births has not been backed up by a scientific paper or reviewed by other academics.
But speaking at a genome summit in Hong Kong yesterday, Dr He said he was proud of his work.
He said he paid for the experiment himself and that the twins, Lulu and Nana, were born healthy. He plans to monitor their progress for the next 18 years.
The gene involved in Dr He’s work allows HIV, the virus that causes Aids, to enter cells. Disabling that gene should mean resistance to HIV infection.
In human beings, as with most mammals, every gene has a copy. With one twin, both copies of the gene were altered. The other had only one of those genes affected, which may mean that the child does not have resistance.
Dr He said the study had been submitted to a scientific journal for review, although he did not say which one.
The reports have sparked a heated reaction in the scientific community, much of it negative.
China’s National Health Commission has ordered an investigation and Dr He’s university has condemned his work.
“We shouldn’t go so far this fast,” the Southern University of Science and Technology in Shenzhen, Guangdong province, said.
Prof Thomas Jensen, a member of Denmark’s national science ethics board, agreed with the university.
“If it’s true then it’s a major step and I think it’s too fast. I was surprised because I didn’t consider that scientists would go this far so fast,” Prof Jensen said. “I think it’s too early. Perhaps we should never permit editing of fertilised eggs and embryos.”
There are many possible benefits to editing, such as replacing faulty genes that cause serious, sometimes fatal, diseases. In theory, those illnesses could be eliminated in the baby whose genes have been edited – and in all future generations.
The Centre for Genetics and Society in California says this kind of gene editing is banned in more than 40 countries. China is not one of them, but reports say that government guidelines indicate that research embryos should not be used in reproduction.
A separate technique in which people have genetic material inserted into their cells so that genes causing serious illnesses can be altered, is already used in medicine.
Last year, UAE media reported on Khalifa Al Qemzi, an Emirati child who had benefited from the technique, called gene therapy, at a London hospital to strengthen his immune system. It was believed to have saved his life.
With gene therapy, the patient’s sperm or eggs are unaffected so genetic changes are not inherited by their children. But if the twins in China become mothers, their children will inherit the changed gene.
Critics of Dr He’s work say that changing a gene may lead to harmful effects and that these could outweigh the intended benefits.
Prof Jensen, head of the department of biomedicine at Aarhus University, said that altering a gene such as those changed in Lulu and Nana might create a new vulnerabilities, such as an increased susceptibility to infectious diseases.
“Gene editing is very precise but it’s not 100 per cent precise,” he said. “There could be some mutations that could create problems for the children in the future.”
Recent history shows there is no guarantee that technology will be adopted just because it has been invented. Scientific and political opposition could remain insurmountable. Prof Jensen said that human cloning has not been attempted more than two decades after the successful cloning of a sheep.
“There could be something similar here,” he said.
“If the scientific community agrees more or less that this is a step we should not take, it could be that the politicians decide there is something in that.
“I hope there will be legislation saying this should not be carried out.”
One suggestion is to restrict gene editing to cases where it offers a unique benefit.
“If we really want to use it, the added value should be clear in the sense it should be enabling something we cannot do through other procedures,” said Prof Pascal Borry, co-author of the book The Human Recipe: Understanding your Genes in Today’s Society.
Prof Borry, a professor of bioethics at the University of Leuven in Belgium, also said the procedure should be completely safe, and that using technology to create designer babies would be a “step too far”.
“I don’t say no from principles, but there should be no other alternatives available,” he said.
“Where it’s not acceptable would be to use it to enhance certain traits.”
So it seems that an era of designer babies, in which parents select particular characteristics that they want for their offspring, is probably still a long way off.
China’s National Health Commission has ordered an investigation and Dr He’s university has condemned his work