Gene editing has the potential to reshape us and our world forever. Bruce Munro talks to Otago-trained bioethicist Josephine Johnston about the role New Zealand could have in deciding how best to play God.
It was the perfect, terrifying wake-up call.
Last year, a group of students decided to try to win an international science competition.
Instead, they showed the world how easy it is to wield the enormous power of gene editing.
Gene editing uses engineered enzymes, known as molecular scissors, to break the double strand of a genome and insert or remove some DNA. The ‘‘edited’’ gene then performs its new instructions; whether they be making possums infertile, eliminating cancer or turning brown eyes blue.
It is one of the most powerful, controversial and rapidly expanding technologies of today.
What the University of Minnesota students wanted to do, was edit the genome of a yeast to change it from red to pink and back again. It sounded suitably geeky and innocent, if somewhat ambitious.
They almost found a way.
Online, they came across a scientific paper that detailed the genetic sequence of the yeast. That information was sent to a company that makes synthetic DNA. The students also sent instructions to build DNA they had designed which would change the colour of yeast.
They then began trying to introduce their gene edit to yeast, in the hope the change would spread through their whole sample population. They did not succeed but their attempt, and the ease with which they could lay their hands on the information and the tools, terrified the scientific community.
‘‘It could have unintentionally created a sort of super-bug,’’ Josephine Johnston, director of research at the New York-based bioethics institute, the Hastings Centre, says.
‘‘This is such an accessible technology. People can order it over the internet. But there is a concern that we don’t have all the safety and controls in place so that it doesn’t accidentally or intentionally get used to create things that cause harm.’’
In a piece of perfect, ironic synchronicity, Johnston, who used to work at the University of Minnesota, is in Dunedin this week for the start of a nationwide speaking tour on the promises and pitfalls of gene editing.
The renowned bioethicist grew up in Portobello, attended Queens High School and studied law and bioethics at the University of Otago. She moved to the United States in 2001 and has been working at the Hastings Centre for the past 13 years.
Johnston has been brought back to New Zealand by the Royal Society Te Aparangi, which is hosting the Editing our Genes: Promises and Pitfalls series of public panel discussions around the country. The first one is in Dunedin, this Thursday.
She believes New Zealand could play a vital role in the effective and ethical application of this powerful new tool.
‘‘Gene editing is a really significant new tool that can be put to a huge variety of uses,’’ she says.
‘‘Some of those uses are really promising, some of them are terrifying and some of them are just really complex.
‘‘Some people think it is all just terrible. But I think there is so much promise in this that we can’t just throw it out.’’
Johnston says gene editing technology is expanding rapidly.
Last month, researchers in Oregon published a paper showing they had edited the genes of embryos to eliminate a gene associated with a potentially lethal heart defect.
The embryo genes were not transferred to a woman.
‘‘It is the first reported editing of the genes of viable embryos’’, Johnston says.
‘‘There has been some controversy already in scientific media about some of the claims they made in that paper, but it is still a huge step.’’
New uses for the technology are being dreamed up everyday. Current and potential applications range from agriculture and conservation to medical cures, biological weapons and creating superhumans.
‘‘It is one of those new tools that suddenly gets applied right across a huge crop of scientific research; from people working with mosquitoes all the way to people interested in cancer and HIV, and everything in between.’’
In many ways, it does not make sense to talk of gene editing as one thing, Johnston says.
For instance, at one end of the spectrum, researchers are using gene editing to find cures for human diseases.
‘‘There are certain cancers and other diseases that have been difficult to model in animals. Gene editing is allowing for the creation of better animal models.’’
And Johnston has met scientists who are doing research to change the genes in mosquitoes to prevent the spread of the birth defect virus, Zika. ‘‘That’s not a premature use of the technology,’’ she says.
At the other end of the scale, gene editing has the potential to create weapons with unimaginable consequences.
‘‘I do know there are conversations happening at very high levels around the potential to use gene editing to create really virulent diseases.
‘‘I know those conversations are happening. I’m not involved in them, and I think those who are cannot talk about them.’’
The technology to do the gene editing and the ideas about how it might be applied are, in many cases, galloping well ahead of the knowledge about how to safely effect the desired changes.
‘‘The technology does not yet always work exactly how we want it to. There are some off-target effects, the change doesn’t happen in every gene in the way it was intended.’’
That does not matter much if you are dealing with cells in a dish. But if you are thinking of making changes in a person, or in embryos that would become a person, then even small risks can be really significant problems.
For example, gene editing might accidentally disable a tumour-suppressing gene or kick start a cancer-causing one.
‘‘So there is a lot of research going on to try to answer the question, ‘How well does it work?’.’’
The genes involved in some genetic diseases, such as Huntington’s disease and fanconi anaemia, are pretty well understood.
‘‘But the places where it gets super murky is the likes of diabetes or cancer where it’s not so obvious which gene it is.
‘‘And then intelligence, or how empathetic you are, or how quickly you get angry; those things are really complex and in some cases people have looked for genes for them and haven’t found them. Which is a relief, I think.’’
Gene editing is also in danger of bolting ahead of any consensus on the rights and wrongs of how it should be used.‘‘Some of the uses are controversial. I wouldn’t want to pretend otherwise,’’ Johnston says.
Controversial, complex and yet to be sorted, but presaged in 1997.
Next month will mark the 20th anniversary of the science fiction film Gattaca.
The film is set in a near-future society in which gene editing is routine and people are discriminated against on the basis of their genetic make-up.
In one scene, a couple talk to their local geneticist about the embryo of their next child.
‘‘I’ve taken the liberty of eradicating any potentially prejudicial conditions; premature baldness, myopia, alcoholism and addictive susceptibility, propensity for violence, obesity, et cetera,’’ the geneticist says.
‘‘We didn’t want ... I mean, diseases yes, but ...,’’ the mother stammers.
‘‘Right. We were just wondering if it’s good to ... leave a few things to chance,’’ her husband says.‘‘You want to give your child the best possible start,’’ the geneticist responds condescendingly.
‘‘Believe me, we have enough imperfection built in already. Your child doesn’t need any extra burdens.’’
The scene encapsulates many of the thorny issues that now lie just around the corner.
Debate about altering people’s genes has been going on for at least 40 years. In the 1970s, the suggestion was that making a change to someone’s genes to treat a horrible medical condition was OK as long as the change could not be passed on to future generations.
Many countries, including New Zealand, have enacted legislation enshrining that idea.
This country’s Human Assisted Reproductive Technology Act prohibits implanting a gene-edited embryo into a woman’s body.
Times have changed, Johnston says.
‘‘That prohibition, that idea that there is a line in the sand that we cannot cross related to heritable changes; that’s totally up for grabs at the moment.’’
Recently, a national committee in the United States recommended that instead of saying heritable changes are prohibited, the line should be shifted to allow the prevention and treatment of disease but not allow ‘‘enhancements’’.
‘‘They wanted to lean heavily towards the idea that it is one thing to treat and prevent diseases, but it is another thing to create superhumans.’’
The ethical concerns about gene editing can be broken down into three key areas, Johnston says.
Firstly, that it is not our role in the world to change the nature of human beings so much that we become really different from what we are now.
‘‘Whether it’s because you’re opposed to making those kinds of decisions for future generations or because you feel that’s for God to do; a spiritual conviction that this is not the right role for humans to play in the world.’’
Secondly, people worry that we would mess it up, that we do not yet know enough to do it well. Lastly, there is the worry that it would create greater inequality within societies or between countries.
‘‘The thought is that, we already have a big problem with inequality, so why would we use the technology to create even more inequality?’’
Johnston is involved in these ethical discussions at an international level. Which surprises the antipodean who has been determined not to lose her Kiwi accent.
‘‘Sometimes, I feel that eventually someone is going to say, ‘We just realised we made a huge mistake. We thought you were educated at Harvard’.
‘‘But I try not to worry about that sort of thing. I just try to be clear, ask questions and learn.
‘‘Somehow, I seem to be able to hold my own, more or less.’’
She believes her home country could also play an international role: as the world’s laboratory for the formulation and implementation of ethical gene editing.
On the practical side, there could be the use of gene editing to eradicate animal pests.
‘‘I feel New Zealand would be the perfect place to try out the things that people talk about.
‘‘You know, would it be better, if possible, to introduce a gene drive into possums, or ferrets, or rats on an offshore island of New Zealand to test out the usefulness of eradicating that pest from the island before native birds are re-introduced, compared with the current approach of using poison?’’
New Zealand has the advantage of geographic isolation and a history of effectively using offshore islands to restore bird species.
‘‘It would be interesting, because I think some of the instincts or intuitions that people have about genetically modified foods, they might have the opposite intuition about genetically modified stoats that are introduced in order to wipe out stoat populations that wipe out birds.’’
And New Zealanders’ thinking and talking about the ethics of gene editing could go much wider than just pest eradication.
That broader conversation needs to be had, but cannot effectively happen in the United States at present, Johnston believes.
‘‘I feel like there are so many other big problems going on right now in America that it is hard for me to imagine the public having the energy or bandwidth to engage with this.
‘‘How to have a really healthy public debate is challenging, especially in big countries with complex problems that are nothing to do with gene editing.
‘‘That is the other reason why I thought New Zealand would be a really interesting laboratory for some of these questions.
Because it is pretty highly educated but quite a small country that potentially could have this public discussion.’’
It would be a fascinating and beneficial discussion for the country to have, she says.
‘‘One of things I’ve seen with bioethics, especially with new technologies, is that people are often just really curious and haven’t already made their mind up.
‘‘The beauty of that, is you get to have a really rich conversation and people get to prioritise understanding over having a firm position.
‘‘It’s very satisfying to be part of that.’’
Laboratory New Zealand
Q What do you think of the idea of New Zealand being a laboratory for the development of gene editing ethics and practice?
Prof Phil Seddon, Department of Zoology, University of Otago:
New Zealand has an international reputation for being willing to try risky new approaches. I think there are a number of factors that would make New Zealand a good place to explore the application of new tools for conservation. For example, we have rodent-invaded offshore islands with no human inhabitants on which trials of genetically modified mice could take place.
Q Would the NZ public would be capable of having the discussion needed to build a consensus on human, animal and environmental gene editing?
Dr Jeanne Snelling, research fellow in bioethics and health law, University of Otago:
New Zealand has a history of strongly debating issues involving genetic technologies, especially when they implicate wider societal values. Given our track record, it is reasonable to think that the New Zealand public would be highly engaged in the issues that such ‘‘germline’’ gene editing raises.
Q What applications of gene editing could be of benefit to New Zealand and New Zealanders?
Prof Neil Gemmell, School of Biomedical Sciences, University of Otago: Gene editing has the potential to impact in pretty much every area of our lives; so many that I simply cannot list them all. However, imagine a future where we can remediate many genetic diseases e.g., heritable blindness, eliminate insect borne diseases such as malaria, introduce genetic changes that lead to rapid improvements to agricultural and productive systems without the need for extensive selective breeding, eliminate pest species in our productive and natural environments, incorporate genetic changes that improve the survival of our threatened species, e.g., kauri engineering to resist die back disease and kakapo that no longer suffer from fertility issues, etc.
A meeting
‘‘Daisy Drive technology for invasive predator removal’’: a community meeting to discuss this system of spreading genes which cause infertility through local pest populations. The speaker is Assistant Professor Kevin Esvelt, Massachusetts Institute of Technology, University of Otago St David St Lecture Theatre, Sunday September 17, at 6pm.
The panel
‘‘Perfectly healthy: Disease-free by technology?’’ The first of the Royal Society nationwide series of ‘‘Editing our Genes: Promises and Pitfalls’’ panel discussions with MC Kim Hill, special guest Josephine Johnston and panel members Peter Fineran, Colin Gavaghan and Jennie Harre Hindmarsh. Thursday, September 21, at 6pm, in the St David St Lecture Theatre complex, University of Otago.
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'They blinded us with Science!'/ Terrified scientific community.
Bioethicists are in no way associated with Frankenstein Science. Bioethicists are the conscience of Medical Science.
A 'community town hall type meeting' was held on September 17th, 2017 in the St David Lecture, University of Otago to discuss daisy drive technology for pest-free NZ. The meeting was chaired by Professor Gemmell who leads the Trojan female technique for NZ pest control.
Kevin Esvelt presented a talk which illustrated in lay terms the technology of daisy chain drive for pest control. He invited the public to become involved and to share their suggestions, concerns, and criticisms. How should this technology be tested for safety and stability? Where should field tests take place and how should they be monitored?
This open and community-responsive development approach is seen as the polar opposite of the traditional closed-door strategy used for engineered crops.
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