Chinese gene-edited babies at risk of early death, study says

4 June 2019

He Jiankui
Rogue scientist He Jiankui

"It is still very dangerous to try to introduce mutations without knowing the full effect of what those mutations do."

Baby girls who had their genes edited by a rogue Chinese scientist may have suffered a mutation that shortens life expectancy, a new study has revealed.

Shocking experiments

He Jiankui shocked the world when he claimed to have created the world's first gene edited babies in November 2018. He said that twin girls known as Lulu and Nana had their DNA edited using a method called Crispr-Cas9 to make them resistant to HIV.

The experiment was condemned at the time as illegal, dangerous, and “monstrous”, and the Chinese Government forced Mr He to halt the “shocking and unacceptable” research. Now, researchers have discovered that people with the particular mutation he was trying to recreate are significantly more likely to die young.

Unintentional consequences 

The germline edits with the CRISPR-Cas9 technique supposedly changed the CCR5 gene to prevent HIV from invading immune cells. Scientists at the University of California, Berkeley, have analysed data in a British database, UK Biobank, and found that the mutation is also associated with a 21% increase in mortality in later life.

The researchers scanned more than 400,000 genomes and associated health records and found that people who had two mutated copies of the gene had a significantly higher death rate between ages 41 and 78 than those with one or no copies.

Previous studies have associated two copies of the mutated gene with a fourfold death rate from influenza, but the researchers say there could be other explanations, since the protein CCR5 codes for is involved in many body functions.

dangerous experiments without consent

"Beyond the many ethical issues involved with the CRISPR babies, the fact is that, right now, with current knowledge, it is still very dangerous to try to introduce mutations without knowing the full effect of what those mutations do," said Rasmus Nielsen, a UC Berkeley professor of integrative biology. "In this case, it is probably not a mutation that most people would want to have. You are actually, on average, worse off having it."

Dr Anthony McCarthy, SPUC Director of Research, commented:

"Although these IVF babies, unlike many IVF-conceived children, were at least given a chance of being born, they were nonetheless subjected nonconsensually to a dangerous experiment more likely to harm them than to help them and perhaps also their descendants.  Even supposedly beneficial interventions on human beings should not be made without consent in cases such as this where there is no real clinical need. IVF makes children more readily available for this kind of reckless and speculative venture since they begin life outside their natural place of protection:  the body of their mother.  It is difficult to believe that women and their partners would be so willing to allow such interventions were they somehow offered for naturally conceived embryos who were simply moving towards the womb and pursuing their normal developmental goals."