Is it right to edit the genes of an unborn child?

It’s been called dangerous, unethical and a game of human Russian roulette.

International outrage greeted Chinese scientist He Jiankui’s announcement of the birth of twin girls whose DNA he claims to have altered using the gene editing technique CRISPR. He says the edit will protect the twins, named Lulu and Nana, from HIV for life.

“I understand my work will be controversial”, Jiankui said in a video he posted online.

“But I believe families need this technology and I’m ready to take the criticism for them.”

The Center for Genetics and Society has called this “a grave abuse of human rights”, China’s Vice Minister of Science and Technology has issued an investigation into Jiankui’s claims, while a UNESCO panel of scientists, philosophers, lawyers and government ministers have called for a temporary ban on genetic editing of the human genome.

Condemnation of his actions have only swelled after Jiankui said he is “proud” of his achievement and that “another potential pregnancy” of a gene edited embryo is in its early stages.

While not completely verified, the news has been a cold shock to the fields of science and medical ethics internationally.

“People have naive ideas as to the line between science and application”, said Professor Rob Sparrow from the Department of Philosophy at Monash University. “If you believe research and technology can be separated then it’s easy to say, let the scientist research it. But I think both those claims are wrong. The scientific research is the application here.”

The fact that we can do something does not mean we should. Read Matt Beard and Simon Longstaff’s guide to ethical tech, Ethical By Design: Principles of Good Technology here.  

---

The ethical approval process of Jiankui’s work is unusual or at least unclear, with reports he received a green light after the procedure. Even so, Sparrow rejects the idea that countries with stricter ethical oversight have some responsibility to relax their regulations in order to stop controversial research going rogue.

“Spousal homicide is bound to happen. That doesn’t mean we don’t make it legal or regulate it. Nowadays people struggle to believe that anything is inherently wrong.

“Our moral framework has been reduced to considerations of risks and benefits. The idea that things might be inherently wrong is prior to the risk/benefit conversation.”

But Jiankui has said, “If we can help this family protect their children, it’s inhumane for us not to”.

Professor Leslie Cannold, ethicist, writer and medical board director, agrees – to a point.

“The aim of this technology has always been to assist parents who wish to avoid the passing on of a heritable disease or condition.

“However, we need to ensure that this can be done effectively, offered to everyone equally without regard to social status or financial ability to pay, and that it will not have unintended side effects. To ensure the latter we need to proceed slowly, carefully and with strong measurements and controls.

“We need to act as ‘team human’ because the changes that will be made will be heritable and thereby impact on the entire human race.”

If Jiankui’s claims are true, the edited genes of the twin girls will pass to any children they have in the future.

“No one knows what the long term impacts on these children will be”, said Sparrow.

“This is radically experimental. [But] I do think it’s striking how for many years people drew a bright line at germline gene editing but they drew this line when gene editing wasn’t really possible. Now it’s possible and it’s very clear that line is being blurred.”