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Pressing the pause button on CRISPR
CRISPR promises to cure the sick and better the healthy. Will it allow us to sidestep societal ills as well? And are we okay with that?
Like IVF and the birth control pill, the genome-editing technology known as CRISPR could be world-changing. For those of us who are cautious by nature, it gives us much to mull.
(For a refresher on CRISPR and some of what happened this past year, check back to HeyReprotech's overview.)
When used to edit the body's non-reproductive "somatic" cells, CRISPR makes changes that expire when the individual dies. An imprecise edit, in such cases, could be devastating, but finite. When used to edit reproductive "germ line" cells and early-stage embryos, however, CRISPR's changes will be passed down through the generations. Think about that.
Canadian bioethicist Françoise Baylis is also concerned that the technology may ultimately be used to avoid confronting societal problems, like discrimination. Baylis says we need to pause and reflect.
A research professor at Dalhousie University in Halifax, Baylis participated in the 2015 International Summit on Human Gene Editing and is a member of the WHO Expert Advisory Committee on Developing Global Standards for Governance and Oversight of Human Genome Editing. In her new book, Altered Inheritance: CRISPR and the Ethics of Human Genome Editing, she argues in particular against trying to use biological solutions for societal ills.
Recently, I sat down with Baylis to ask a few questions.
What does the general public think about when they think about genome editing?
I think there are those who think about all manner of cures for all kinds of genetic illnesses. Many also imagine a future in which they'll be able to have smarter children, more athletic children, more attractive children. They want their children to be successful in these various areas of competition.
They don't see these desires as ethically controversial.
Some would say we're already deeply committed to enhancing our children. We do this in all kinds of ways. We offer them ballet lessons, math lessons, music lessons, we send them to private schools, we take them on trips around the world to educate them, we register them for sports at age eight. Genome editing is just one more tool in the tool box. People who hold his view might go so far as to say that we have a moral obligation as parents to try and help our children have the best lives they can. And that if this is something they can give their kid, of course they would do it.
Your reply to that?
I worry about how this reinforces the idea of children as products. If parents are making certain kinds of choices about the traits they think are going to make for a good life, it's in relation to a particular vision of the good life.
What happens if the parents think their child should be this great football player and they modify his genes in support of that goal, but football isn't what their child wants to do? I think this use of genome editing can shut down opportunities for a child to have an 'open future.'
You say that with heritable genome editing we're crossing a new line, that it's different from, for instance, preimplantation genetic diagnosis. What's the new line?
The new line is the line between selection and design. It's the difference between choosing among available IVF embryos and making changes to them.
The new line is that you are going to say, 'I'm not restricted to choosing from what's on offer, I can modify the IVF embryos that I have.'
Consider, for example, a situation where there are five healthy embryos and five unhealthy embryos. Someone might say, 'Well, we shouldn't be discarding these five unhealthy embryos, we should try to fix them. That way we might have ten healthy embryos we can work with.' Indeed, there are people who are writing about the moral obligation to 'rescue' those unhealthy embryos.
Isn't the real worry that you might take healthy embryos and try to make them even better? Surely that is the ultimate concern? You screen them, they're healthy, but they're not good enough?
That's certainly what some people are talking about. In my book I call into question the distinction between treatment and enhancement by referring to health-related interventions and non health-related interventions. From my perspective, all interventions are enhancements. Too often we've assumed that 'treatment' is good and 'enhancement' is bad. Because I'm trying to break down that dichotomy, I don't use that language. In either case, you're introducing risks to future offspring. You're introducing risks to society.
What sorts of risks are you concerned about?
For a start, there are the physical risks to women research participants — the women who provide eggs for basic research and the women who might one day be asked to accept the transfer of genetically modified embryos. There are the risks to prospective parents who may be burdened with the care of children damaged by the genetic modifications. There are the physical harms to future children who may experience unintended harmful consequences. There are the potential harms to society in terms of increased inequity and injustice. And there are the potential harms to the gene pool as a result of decreasing diversity.
Yikes. How should we study this? What kind of follow up will we need?
People like to say, 'Oh yeah, we just need to have long-term follow up.' When I hear this I want to raise my hand and say, 'What do you mean by 'long-term'? Do you mean their whole life? Do you mean until they're 18 years of age? Do you mean until they reproduce? Moreover, do you truly believe that you can ask parents to enrol their kid in a clinical trial for the rest of their life? A clinical trial is organized, it's orchestrated. How would you possibly do that without infringing on all the rights of a person who has been born and who may have been born healthy or unhealthy — and either way may not want you involved in their life?
You and I both know that if this becomes something that can be offered, it will be offered, and it will be offered for many things that really can't be justified, apart from the fact that somebody wants it. What sorts of modifications do you expect to see?
I think we will see trivial modifications early on, like eye colour and hair colour. Those will be easy things to offer and people won't think of this as threatening.
I also think that people will move into what we think of as complex traits. We can see that already with talk about modifying the MSTN gene, which produces myostatin, a protein that regulates muscle growth. It acts like a brake on the production of muscle tissue so that the muscles don’t grow too big. The goal in modifying the MSTN gene is to take the brakes off to allow increased muscle development.
People are talking about it not just to treat Duchenne muscular dystrophy, a fatal muscle disease, but also to improve athletic performance. In the future, some parents may be told, 'If we manipulate this gene, we can affect muscle development and your child will be faster or stronger. If you want your child to be a great athlete, we just need to tweak their genetics.' Meanwhile, athletic performance is affected by as many as two hundred genes. As well, there are environmental influences, like diet and training.
But so what?
I think we need to spend some time now thinking about what kind of world we want to live in. If we're really going to embrace genome editing technology, what are the ways in which we need to steer it? And in order for us to steer it ethically, we need to slow down. We need to better understand the technology, better understand our values, and better understand our goals and objectives.
We think we're going to solve social problems through biology, and I think that is a huge mistake.
What do you mean by that? Give me an example.
Imagine a couple that comes to an IVF clinic and says, 'We want a white baby girl. And that's important to us not because we're sexist or racist, but because we live in a racist country where men of colour experience serious discrimination and are at increased risk of ending up in jail or dead. We believe that sex selection and genome editing could increase our child's quality of life and also her life expectancy. We can't fix the environment our child will live in, but we want to fix the gene part.
This is the kind of thing I'm asking people to think about. What kind of project is this?
What kinds of problems do you think could be tackled with genome editing?
We have obligations to help patients who are suffering from serious genetic illnesses where we believe that we can use somatic genome editing to intervene and offer treatments.
I think there's a huge difference, however, between responding to the needs of patients who are alive today and suffering versus responding to the desires of prospective parents who are at risk of having children with a heritable illness. These parents insist that they have a right to genetically-related healthy children. I disagree.
I am willing to stand up and say there is no right to have children, healthy or otherwise. Where does this supposed right come from? What is it grounded in?
If you could ask Françoise Baylis a question about genome editing, what would you ask?
I would ask 'Why are you writing this book about heritable genome editing if you are busy criticizing this as an area of practice?' My answer is that I really feel like we're fiddling while Rome burns. We're spending all this attention on this. We have a lot of problems in the world, like climate change, pollution, resource depletion, war, and overpopulation. Meanwhile, we are spending time, talent and treasure on human genome editing without considering the broader social and political context. We are 7.7 billion people, so why are we worried about ...this?
Some people say back to me, 'Well, are you calling into question all reproductive technologies then, given that we're 7.7 billion people?' I'm willing to have that conversation.
This interview has been condensed and edited.
Françoise Baylis. Altered Inheritance: CRISPR and the Ethics of Human Genome Editing. 2019.
Baylis’s interview on CBC radio's The Current.
Baylis’s presentation at the 2019 meeting of the American Society of Reproductive Medicine.
HeyReprotech's refresher on CRISPR.
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