Genetic engineering: Not fixing serious diseases could be morally wrong, expert claims

A rogue Chinese scientist's claim to have produced the world's first genetically edited babies shouldn't scare people off the potential benefits of the technology, a Kiwi expert says.

He Jiankui caused uproar when he announced the birth of twins Lulu and Nana in late November, the pair's DNA having been modified using the cutting-edge CRISPRCas9 technique to increase their genetic resistance to the HIV virus.

The father was HIV-positive, and Prof He says the girls were born healthy. But this didn't stop widespread backlash amongst the scientific community, and the immediate suspension of all his research.

"What he did was really ethically dubious," University of Otago law professor Jeanne Snelling told The AM Show on Thursday.

"He introduced a change that may have actually been associated with off-target effects. Those children who were born might actually suffer illness in the future as a result of that change. He implemented before there was sufficient pre-clinical trials, before we had animal trials to give us an idea of the safety. The risk-benefit analysis just wasn't there."

Dr Snelling, who specialises in bioethics and health law, said there are genuine uses for the new technology - such as eliminating conditions with a genetic basis, such as Huntington's disease.

"People who don't want to transmit that mutation to their future offspring have quite limited options. They can either do prenatal testing and abort a foetus, if that's what they choose, or they can do pre-implantation genetic diagnosis, try and identify the mutation and only transfer embryos that are not carrying that mutation.

"What this new technology does is it gives us a theoretical possibility of modifying the mutant gene so you can have a healthy child that won't develop the illness."

He Jiankui
He Jiankui. Photo credit: Reuters

She said it may even be morally wrong not to use genetic editing to eradicate serious disorders like Huntington's. In contrast, Dr He's genetic editing - if it worked - only increased resistance to a single virus, and may not have been required.

"It's not comparable to Huntington's disease, just to confer a trait that is beneficial but not necessary."

What scientists don't know yet is how making edits - even beneficial ones - could affect not just the recipient, but their offspring and future generations, because the technology is so new.

"Once they're born with those edited changes, they can actually transmit those changes to the future generation. [It has] the potential to alter the human gene pool."

Dr Snelling said other rogue doctors with more sinister intentions that try and create a master race won't find it easy.

"It's a theoretical possibility. Some of the traits that you might be talking about in that situation might be people wanting to engineer a race to be super-intelligent or for pro-longevity, to live many years.

"Some of the problems with those theoretical concerns is a lot of those traits are made up of a complex combination of lots of genes and environmental factors. There are concerns about whether we could actually engineer those kinds of traits.

"But I think if it was possible, there will always be people who want to take advantage of any kind of change that might be beneficial or confer advantage."

Jeanne Snelling
Jeanne Snelling. Photo credit: The AM Show

And the strong backlash to Prof He's announcement gives her hope a future would-be Hitler with access to CRISPR-Cas9 won't get very far.

"What we have seen is a real global effort to come to some consensus about what would be a responsible way forward with this technology, so we are definitely seeing that kind of concerted effort. I think this fact that He Jiankui  in China has received such a backlash gives me some optimism that we might actually achieve some global consensus about how to develop it and monitor it at an international level."

The World Health Organisation earlier this week said it is forming a panel of experts to formulate guidelines on the use of human genetic editing.

"Gene editing may have unintended consequences - this is uncharted water and it has to be taken seriously," said director-general Tedros Adhanom Ghebreyesu.

"We will work with member states to do everything we can to make sure of all issues - be it ethical, social, safety - before any manipulation is done."

The Chinese Academy of Medical Sciences was among the medical bodies that condemned Prof He's work. The Southern University of Technology, where Prof He worked, says the research was done off-campus and it has opened an investigation.

Newshub.

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