Canadian bioethicist calls plan to prevent deafness in gene-edited babies 'offensive'

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A Russian molecular biologist says he plans to edit human embryos to prevent deafness — something Canadian bioethicist Françoise Baylis says defies the international scientific community.

Denis Rebrikov, who heads the Kulakov National Medical Research Center for Obstetrics, Gynecology and Perinatology in Moscow, told the New Scientist he has recruited five couples with genetic deafness who wish to conceive a child who can hear. 

Rebrikov has announced the plans despite the widespread backlash against a Chinese scientist who, last year, announced he'd edited the genes of twin girls.

Baylis is Dalhousie University ethics professor who serves on a World Health Organization committee that is developing standards for editing the human genome, and the author of Altered Inheritance: CRISPR and the Ethics of Human Genome Editing. She spoke with As It Happens guest host Robyn Bresnahan about Rebrikov's plan. Here is part of their conversation. 

What can you tell us about this Russian biologist? 

I think he's a person with excessive hubris and confidence, somebody we might call a braggart. 

He's wanting to do science that everybody pretty much says is irresponsible because it's too risky. And his response has been, and I'm quoting him now, "I think I'm crazy enough to do it." 

What exactly does he want to do? 

What he wants to do is to take human embryos in the lab and genetically modify them before they're transferred to a woman so that the child that would be born would carry this genetic modification. 

I'm telling this story in kind of vague, abstract terms because I don't think anybody's quite sure what modification he's going to make. 

In June, he said he was going to make a modification to the CCR5 gene in order to provide immunity to HIV infection. 

A month later, he said he's going to modify a different gene, this is the GJB2 gene, in order to provide protection from deafness. So I don't know what he's really going to do. 

What are you most concerned about when it comes to his plan to edit human embryos?

I have a number of concerns. Several of them I think are shared globally and these are concerns about the science. That really you're talking about modifying a human being at the embryonic stage in a context where we don't know that the science is safe. 

The two classic examples people give of potential problems are something we call "off-target effects," and that means the scientist goes in to try to make a change to the gene and inadvertently makes a different change. 

Another kind of problem is what you would call an "on-target effect," where you actually got to modifying the right gene, but it had other unintended consequences. One might be initiating cancer. 

So I think what all the scientific community is saying pretty much in one voice is: "It's premature. You don't know what you're doing." 

Can you help us understand why these couples would need gene editing to prevent their children from inheriting the deafness? 

I think one of the interesting things in that statement is the word "need," because I don't actually think they need anything. What they might is "want". 

The only reason I want to be specific about that from the very beginning is I think we have moral obligations as a society to respond to needs.

But if these are things that are in the category of want ... I don't have the same kind of moral obligation to respond to your wants. 

Now beyond that, what he's suggesting is that there are some parents who, because of their own genetics, any child that they would have would have a genetic condition.

What he is proposing to do is to make a modification such that the child would not be deaf. 

What's interesting and controversial about this is that many people in the deaf community think that this is a misguided perspective.

And that's because they don't see deafness as a disability. They just see that as diversity.

If you are saying that the international scientific community has some major problems with this Russian biologist's plans, who has the authority to actually stop him? 

At this point in time, it would only be the Russian government. And that's because we don't actually have any kind of, you know, international ethics court. 

What has the Russian government said about this? 

At this point, there hasn't been a response and so we're not even 100 per cent sure what would be the ethical and/or legal hurdles he would have to overcome. 

There are a number of international initiatives underway trying to address both the ethics and the governance of this science. 

And what I think is really, at some level, offensive is to have a single scientist say, "I don't care about what work is being done internationally, I'm just going to do what I think I can do."  

Written by Sarah Jackson and Kate Swoger. Produced by Kate Swoger. Q&A has been edited for length and clarity.