After almost three decades, legislation around gene modification and editing technology is getting an overhaul
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After exhausting all the available options for treating his rare blood cancer in New Zealand, David Downs was told by his doctor to go home and make the most of the time he had left.
Then, assisted by a stroke of luck and a lot of fundraising, he took part in a gene-editing trial in the USA. Three weeks after the treatment, there was no sign of cancer in his body.
Last week, the government confirmed plans to end what was effectively a ban on genetically engineered and modified organisms outside the lab.
The reformed legislation will use Australian laws as a blueprint and include the establishment of a gene technology regulatory body, to ensure any developments won't impact human health or the environment.
In the wake of this announcement, Downs spoke to The Detail about his experience receiving life-saving gene editing treatment.
"The CAR-T cell therapy, from a patient's perspective, is very straight forward compared to the normal treatments. Chemotherapy is the normal treatment for blood cancer, that is essentially poison, you're putting poison in the human to try and kill the cancer cells. When you go to CAR-T cell therapy it's quite different because instead of trying to kill the cancer, it basically assists the immune system to do its job."
Downs says the idea behind the therapy is that while the immune system can fight infection naturally, it doesn't recognise cancer cells as dangerous, so CAR-T cell therapy essentially teaches the immune system to recognise and kill the cancer.
"My experience was going to get my blood taken out, which takes a few hours but it's not particularly difficult. Then they send that blood off to a laboratory, I wait about three weeks while those T-cells get genetically engineered and that's very precise. Then they send it back to me and I basically get one injection of my own blood," he says.
Downs says that once those genetically engineered cells are in his body, they recognise the cancer as a danger and destroy them.
"The little, tiny PAC-MEN are going around chomping away at the cancer cells," he says.
"When I went back, three or four weeks after the shot, they said that's it, there's no sign of cancer left in your body."
CAR-T cell therapy is already being trialled in Wellington at the Malaghan Institute, which has gained international recognition for its results.
Patients there are showing the fewest side effects, despite getting a lower dose than in trials in other countries.
Downs' hope is that with the restrictions around gene modification easing, more patients will be able to benefit from the treatment that saved his life.
He understands the hesitancy but hopes New Zealanders can have an informed discussion instead of taking sides.
"I do get worried when people make uninformed comments," he says.
"Some of the perceptions around genetic modification are outdated, if they were ever true. Our legislation in New Zealand has been in place for nearly thirty years and it's based a) on a set of technologies that have now completely changed, but b) even at that time there was a lot of false narrative."
Downs also cautions those against GMOs to be mindful of those who can benefit.
"The discussion has to be respectful of the people that can benefit from these things. What you really have to keep in mind is that there are real human beings whose lives will be saved because this is going to help them and to lump that all together into this big 'it's too hard, I'm too fearful' really does a disservice to those people," he says.
"One of the things to realise is that this is not a free-for-all. We're not opening up gene editing and suddenly our whole world will change, it will be regulated through a very careful regulation model."
The Detail also speaks with Dr. Richard Newcomb, a Chief Scientist at the Plant and Food Research Centre in Tāmaki Makaurau.
He says he's found through discussions with consumers both here and internationally, that a lot of the hesitancy comes from not knowing enough about GMO and the technology.
"Currently the regulations are a one size fits all approach where we have a very high regulatory set of hurdles to get over for any kind of gene technology that falls under the definition as outlined in the HSNO Act," Newcomb says.
The HSNO Act - short for Hazardous Substances and New Organisms Act of 1996 - has had very few changes until now.
"Where we're moving to as a country will be regulations that are more proportionate. So those technologies that are lower risk will have lower levels of regulatory compliance, while those that are perceived to be higher risk will still have the higher barrier to cross."
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