New gene editing technology has made human gene editing possible. The gene editing techniques Zolgensma and Luxturna are already used as therapies for some types of spinal muscular atrophy and inherited retinal disease.
The newest gene editing technology, CRISPR, uses an enzyme to act like a pair of scissors which can cut out or add genes to our DNA. CRISPR is likely to accelerate and expand the ability to edit human genes.
But CRISPR also raises new ethical, legal and social issues. Distinguished Emeritus Professor Dianne Nicol from the Centre for Law and Genetics, University of Tasmania, explains:
'Human gene editing employing CRISPR technology could be used to treat childhood and adult diseases. It could also be undertaken on human embryos or germ cells. In these cases, any genetic changes that are introduced would be passed on to future generations. We don't know what the consequences would be for those future generations. Since they are unborn, they don't have the capacity to consent to this.
'There are also concerns that CRISPR might be used to change or enhance human beings. Any use of CRISPR is likely to be very expensive. This raises concerns that only wealthy people or organisations might be able to use this technology. That could create more inequality.'
Consulting Australians about gene editing
Dianne says Australians need to decide under what circumstances we should allow human gene editing. But information about gene editing is so complex that it takes time to understand it. That is why Dianne asked people to participate in a citizens' jury.
'The citizens' jury brings together a diverse group of people to deliberate on these issues for 3 days,' Dianne says. 'They get a basic run down from experts on the technology and the ethical, legal and social issues.
'Then they're left to deliberate for themselves on what they see as the important issues.'
The citizens' jury experience
Before he joined the jury, Stephen Merrett only knew what he'd heard in the media about human gene editing. How did he react when he heard from the experts what is now possible?
'I was just gobsmacked at how far things had come in what seemed like a short time and it had not found its way into public discussion. The potential for what could be achieved seemed like science fiction,' Stephen tells us.
Juror Ena Galuega is a sci fi buff. He had concerns about how people could use human gene editing. 'I could see covert military uses of it like enhancement of soldiers. I'd hate to see elitism where people can have designer babies and those kinds of issues divide society. The whole subject is of benefit to humans, but the risks are just as great.'
For Stephen the citizens' jury 'was probably a once in a lifetime opportunity. We had experts inform us on something that was very important and discussed that with people of different backgrounds. We came up with a set of guiding principles that seemed to reflect my personal views in the mix. That was a good process. This is a great model.'
The jury model also impressed Ena. 'The good thing about that is we got to hear all the experts on a certain subject. We would move around to the different tables. We got to mingle with the other citizens and see, hear, and interact with other opinions. I think that was very important.'
The citizens' jury speaks
Stephen was one of two jury members who presented the jury's findings to a group of medical science policy decision makers. 'It was scary to look at the audience knowing the positions that they held,' he says. 'One would hope that there were some takeaways in there for them. The fact that they were there and they heard it was enormously encouraging.'
Although the jury had a range of views, the majority recommended that human gene editing should be:
- only used to alleviate human suffering, improve quality of life, and reduce childhood mortality.
- regulated with regular reviews that include stakeholder and community input.
- made available equitably to those most in need, with their informed consent.
- researched to identify and assess the risks and benefits to society and individuals, including those with lived experience of genetic disease, before future developments take place.
The jury recommended not to allow heritable forms of human gene editing until there is:
- more research to assure safety and efficacy.
- more community engagement for guidance on how to proceed.
Stephen says the jury aimed to put 'safety mechanisms around human gene editing. 'We don't want to stifle innovation or creativity, but we want to keep the public safe. We want the safety mechanisms to be transparent to the public.'
Did the citizens' jury help Dianne complete her research?
This was the first time Dianne consulted the community about genetic issues using the citizens' jury process.
'It was profoundly moving to see people come in with a real enthusiasm and willingness to engage,' Dianne says. 'Participating in the jury gave them such a high level of understanding about these complex issues.
'This shows that anybody can deliberate on these things if you create the right opportunities. You can have respectful conversations about what concerns them in a way that engages with them and doesn't ignore those very legitimate concerns. To me that illustrates why citizen engagement is really important.'
The MRFF supported the citizens' jury project with a $460,000 grant.
