Gene technology: Average people urged to tell scientists when they've gone too far

Experts are calling for ordinary people to be involved in the decision-making around new gene technology to stop science ging too far. 

Left to their own devices, scientists can't necessarily be trusted to make the right ethical decisions on powerful new gene-editing technology, the group of academics has warned. 

Instead they say groups of 'citizens' assemblies' of average Joes and Janes should come up with international guidelines - no scientists allowed - to prevent people trying to engineer babies "for super-strength or musicality". 

"The promise, perils and pitfalls of this emerging technology are so profound that the implications of how and why it is practised should not be left to experts," said John Dryzek of the University of Canberra's Centre for Deliberative Democracy and Global Governance.

He and 24 others have penned an article for journal Science explaining why "citizens with no history of activism on an issue... are good at reflecting upon the relative weight of different values and principles".

"Think of how we trust juries in court cases to reach good judgements. Deliberation is a particularly good way to harness the wisdom of crowds, as it enables participants to piece together the different bits of information that they hold in constructive and considered fashion."

The move comes after a Chinese scientist went rogue in 2018, saying he'd used an editing technique called CRISPR-Cas9 to alter the genes of newborn two twin girls when they were just embryos. 

He Jiankui was jailed in December last year, a court saying he'd "crossed the bottom line of ethics in scientific research and medical ethics". 

University of Auckland molecular biologist Hilary Sheppard told The AM Show on Friday what He Jiankui did was unethical.

"I think that opened everyone's eyes to the potential ethical issues we're going to face with this amazing technology. It's not ethical and we're not quite ready to use it in embryos...

"You might accidentally hit another gene you weren't intending, or you could create a variant of DNA that hasn't been seen before in nature, and we don't know what the consequences of that may be." 

Dr Sheppard said CRISPR is useful for research, but isn't quite safe enough for editing unborn babies yet - ethical concerns aside.

"A lot of traits people might be interested in editing are too complex to even consider. But if we're talking about disease-causing genes, there are certainly diseases that we could edit perhaps, but there are alternatives that are much safer."

Hilary Sheppard.
Hilary Sheppard. Photo credit: The AM Show

He's aim was to create a mutation that would protect them against HIV - it later emerged he'd failed, messing up the editing and creating new mutations whose effects remain unknown.

"You might accidentally hit another gene you weren't intending, or you could create a variant of DNA that hasn't been seen before in nature, and we don't know what the consequences of that may be," said Dr Sheppard. 

Citizens' assemblies of "teachers, plumbers, butchers, bakers and candlestick-makers" have been put together in a few countries, including Australia, China, the UK, France, South Africa and Brazil. But Prof Dryzek and the other authors of the Science article say decisions can't be made locally. 

"The whole globe has the potential to be affected by this, so we must seek representation from as many public audiences as possible across the world," said co-author Anna Middleton, a genetic counsellor from the UK's  Wellcome Genome Campus. 

"We don't want to get to a point where you can create designer babies in China for example and not in other countries," added Dr Sheppard. "People can move around the world, so it's an international issue."