School violence

Guest: Valerie Ouellet

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[Students cheering]

LL: About 300 students at Alexander Galt Regional High School in Quebec's eastern townships walked out of class last week. They were protesting after a 15 year old female was allegedly threatened at knifepoint by a male student. The students claim that bullying is becoming an out of control problem and their school isn't doing enough to address it. Earlier this month, a case in Hamilton, Ontario, captured the entire country's attention. A 14 year old boy was stabbed to death outside his school in front of his mother.

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Everyone failed my son, even I did. I tried to save them and I couldn't. I couldn't get to him in time.

LL: Cases such as these raise questions about the levels of violence in schools. A CBC News investigation is bringing to light statistics about violence that haven't been seen before, and it's exposing just how incidents of violence are, or are not, being tracked by officials. Senior data journalists, Valerie Ouellet , it is with me in our Toronto studio. Hello.

VALERIE OUELLET: Hello.

LL: The story of that teen in Hamilton really, really tragic. What have you been finding out about how common violent incidents are in our schools?

VALERIE OUELLET: I want to begin with the story of one student in particular, because his story is like so many others. A couple weeks ago, I travelled to Collingwood, Ontario, to meet with a quiet, shy 16 year old named Taza.

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TAZA: There's not too many people with my similar interests to myself. People here are really into hockey and sports, and I'm not really into that.

VALERIE OUELLET: Instead, Tessa likes music and comics. He lives in an attic full of comic books and mangas. He loves composing music, has these huge speakers. He's really proud of and wants to have a career as an artist or as a studio manager. He even let me listen to some of his work.

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VALERIE OUELLET: But I was there to talk about something a lot more serious. Something that happened to him two years ago. He'd just started Grade nine in a new school. Collingwood Collegiate Institute. His parents actually moved to Collingwood so he could attend the school. He said it was overwhelming to be the new kid among hundreds of students. And one day during his second week, it got even worse.

LL: Just in his second week? What happened to him?

VALERIE OUELLET: It was Friday during lunchtime, and a group of boys started calling him names. And when he tried to walk away, they kept following him and then they attacked. And it was all caught on camera.

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VALERIE OUELLET: It's hard to make out what they're saying, but the video was just a few seconds. But you can see in it, you can see Taza underground and a student is standing next to him, punching him in the head, repeatedly kicking him. And after a few seconds, someone pushes that student away in the final frame. Taza is alone. He's lying bloody on the floor, struggling to get up.

LL: That is horrifying. So what happened next?

VALERIE OUELLET: What he and his mom say happened next is even more troubling. After the attack Taza says no one from the school came to help him. He was still bleeding and concussed. He left school and thought he'd go home for help. But then he realised he was really hurt and he came back to school. And when he walked into the principal's office, he had quite a shock.

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TAZA: I get to the office and one of the boys is actually right there in the office with me in the same room. There was just this really scary moment when he was right there with me. And the vice principal just told me to wash the blood off of my- off of my head, which was probably one of the least comforting things you could say to someone who's bleeding, concussed and really scared.

LL: So he was saying that one of the boys who beat him up was him in the room with him there.

VALERIE OUELLET: In the office.

LL: So where were his parents at the school contact?

VALERIE OUELLET: Eventually he did. And it's to call no parent wants to get. His mother, Tai, says she was surprised to hear from the school and even more surprised when she came to school and saw her son.

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TAI: When we got to the school, it was apparent that he needed a medical attention. He was bleeding. So it was a rapid turn of events from expecting something that even Taza, again, a scuffle would have been startling. But then to see him with his head wound and the school hadn't called 911 and him being very distressed.

VALERIE OUELLET: How has this changed your boy?

TAI: So he will always say that today my child had died.

LL: What a nightmare for both of them. What did she do?

VALERIE OUELLET: Well, his mother immediately took him to the hospital. She said the back of his scalp was split open and it had to be closed with staples. His rib cage and back were covered with bruises where the boys had kicked him. And assault like these, serious enough for someone to go to the hospital, they're considered violent incidents by Ontario's Ministry of Education, and every public school is legally required to report them each year.

LL: So did that happen in Taza's case?

VALERIE OUELLET: No. We asked both the school board and the ministry for their violent incident reports and found that in both cases the school had reported zero violent incidents that year.

LL: Zero?

VALERIE OUELLET: Zero.

LL: Okay, so what does that say about the supposed reporting requirement?

VALERIE OUELLET: Well, at least it suggests that it might not be working as intended. The reporting system was put in place in September 2011. It's supposed to happen every time a violent incident occurs. That means serious physical assaults like Taza's, but also sexual assault, weapons, theft, extortion and anything motivated by hate or bias like homophobic or racial attacks. And schools have to fill out a paper form which goes into each student's record. But the schools also pass the numbers along to the board and the boards send these numbers to the ministry. So we're talking about statistics for two million children enrolled in 5600 schools. And that's what I dug into.

LL: And that's in Ontario, correct?

VALERIE OUELLET: That's in Ontario.

LL: Okay. So what did you find?

VALERIE OUELLET: I found a lot of red flags. Some boards reported 200 violent incidents one year and then 18 the next. Some boards with 40 or 50 thousands students enrolled had zero reports for years. And then a few boards simply didn't seem to submit numbers at all for some years. So I highlighted all those red flags and found that overall a third of school boards in Ontario had inconsistencies in the figures they were reporting. And then we cross-referenced to figures with some news stories of assaults like Taza's, and we found a half dozen incidents serious enough to make the news, but not reported by the schools, at least based on the figures that we obtained from the ministry.

LL: That, again, is shocking. So what what does that tell us?

VALERIE OUELLET: Well, I'm not an expert and I haven't studied violence in schools. So I reached out to researchers who have and I showed them these numbers and all the strange patterns that I'd found. Here's what Tracy Vaillancourt had to say. She's a professor of education and psychology at the University of Ottawa. She's also part of a national network of researchers called PREVNet. The group provides research and resources on bullying in Canada.

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TRACY VAILLANCOURT: The underreporting stands out to me. It's striking how so many of the columns have zeros in it. And that doesn't make sense when I think about all of the national surveys and even smaller surveys, local surveys, from my colleagues in Canada. There shouldn't be that many zeros.

LL: So she's saying that there must be incidents that aren't being recorded. What does the Ontario Ministry of Education say about those questionable figures?

VALERIE OUELLET: Well, we shared examples of these inconsistencies we found with the ministry. And I was really hoping I could ask Minister Stephen Lecce how figures are reviewed, but the minister wasn't available. In a statement, a spokesperson said it reviews the figures every year, adding that it is clearly unacceptable for boards not to report violent behaviour. And there is also a footnote at the bottom of one of the tables we obtained. I'll read a part of it to you because I think it's really revealing. It reads: "The ministry learned that extreme variances from year to year have been due to issues such as information system errors and board decisions to report after several years of non reporting." I just want to remind you on paper, schools are legally required to report. This tells us that the ministry knows reporting doesn't always happen. It knows that its electronic system is having technical difficulties. And yet when we reached out, they gave no indication that this will be fixed.

LL: Why aren't schools reporting what's happening?

VALERIE OUELLET: There are a number of different reasons, according to the experts I consulted. Here's University of Ottawa Professor Tracey Vaillencourt on this.

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TRACY VAILLANCOURT: I mean, we know there's an underreporting. You can just look at social media and get a sense. There are schools in your Excel file that say that nothing happened and yet there's media accounts, somebody being seriously injured at school due to a violent incident with another student. So what is happening? Like why is it that they're not reporting it? And there's a variety of reasons why it could be. One, I'll give them the benefit of the doubt. Maybe it got shuffled and lost, but maybe it's more sinister. Maybe they recognize this is an issue. They recognize that they don't know how to deal with it. And so instead of addressing it, they're going to ignore it.

LL: Okay. That's worrying. But you talk to some of the school boards. What did they tell you?

VALERIE OUELLET: Well, two of the boards I contacted said they had technical problems with reporting and that they only realized her figures were wrong after CBC contacted them. They used words like clerical error and data anomalies to explain the issues. Taza De Luna's school, for example, it said it did report his attack. It even showed me the reporting form. I've seen it. But somehow at the board level, there was a mix up, they say. And his attack wasn't counted. In fact, there were three violent incidents for that year, including Tas's assault, all unreported. And then the next day, that same board came back again and told me, we're sorry, we gave you the number three but actually, it was just a one incident. Another board said the reason their numbers were so high last year is they had counted everyone involved in an incident, including witnesses. This is eight years into a new system. The least we can say, Laura, is that there's still confusion.

LL: Yes. No kidding. So we've been focussing on Ontario so far. What about the rest of the country?

VALERIE OUELLET: Well, it turns out that in more than half the country, it's not even mandatory for school boards to keep track of violent behaviour. In fact, only four provinces and territories have a mandatory reporting system for boards and schools. Nova Scotia, Yukon, Nunavut and Ontario.

LL: Okay, so we've heard about the issues in Ontario. So do we really have no good picture of the reality of school violence across Canada?

VALERIE OUELLET: Not according to Ron Avi Astor. He's a professor at the University of California, Los Angeles. He's published more than 200 academic studies on violent behaviours in schools. He's done research in dozens of countries, including in Israel and Chile. Here's what he had to say about Canada's reporting system.

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RON AVI ASTOR: That's not a real system for the country. Many countries have gone back and forth on whether it should be voluntary or mandatory. And what we see is in the places where it's not mandatory, places tend not to do it. The other thing that stood out is your reporting requirements don't involve kids. That's pretty shocking because most of the places that we've looked around the world, principals are very protective of their schools and their schools reputations. So, yes, we want to hear from principals, but they tend not to be similar to what the kids reports are. And from everything we've seen over the last 20, 30 years of research, the child reports are what keeps everybody honest.

VALERIE OUELLET: So that's Ron Avi Astor. And Laura, practically every researcher we spoke to told us this. Children know so much more about violence in their own schools than adults.

LL: But how do you hear from them if the schools aren't reporting?

VALERIE OUELLET: Well, we took a completely different approach. We teamed up with researchers, specialized in childhood violence and put together a survey. We sent it to more than 4000 Canadian students in what we heard was very different from what the schools reported.

LL: Interesting. Okay. What did you find?

VALERIE OUELLET: Well, for one thing, Taza De Luna is definitely not alone. More than a third of 14 to 21 year olds we surveyed said they were physically assaulted by another student while in school and nearly one in five high schoolers were threatened with a weapon. Now, it doesn't mean that all of these attacks were as violent as Taza's were, but still. And maybe the most disturbing part is that nearly half of students who experienced violence in high school did not report any of the incidents. We found that 35 percent of students reported only some incidents. And just like Taza De Luna, many male students did not feel that the reporting really helped.

LL: So at the end of the day, is there any evidence then that reporting and gathering the data would actually make any difference?

VALERIE OUELLET: All the researchers I've spoken with agree, whether it's true board reporting figures or student surveys, it's really important to have a way to know if our schools are safe or not. First of all, to allocate resources like money or counsellors or psychologists. But second of all, to answer a very basic question, are things getting better or worse? But most of all, it matters so victims can be seen and heard and better protected.

LL: Of course. So, let's go back to Taza, the Collingwood student that we heard from earlier. How is he doing today?

VALERIE OUELLET: Well, he's 16 now and still going to the same school with some of the same students who bullied him. And he's made some close friends. But he says overall, it's been really hard. He says the attack left him with constant anxiety in the classroom and he's basically counting the days until he can graduate and leave for good.

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TAZA: I don't think I've ever gotten back from that, from the anxiety. I'm not looking for like new friends anymore. I'm not excited about that. I'm sort of dreading the school every day now. I just really don't enjoy it. And it's not making it any easier for my academics there either.

LL: Well, you can actually hear in his voice that that's quite disturbing how much this is bothering him. Two years after it happened.

VALERIE OUELLET: Yes. And two years later is still difficult for him to talk about this experience. And, you know, researchers do follow victims of violence like Taza, over years to see what happens to them. And they say long after they graduate, some still have a profound sense of injustice. They have this cynical feeling that society just doesn't care about them. UCLA Professor Ron Avi Astor assess children will learn a lot just by looking at how adults deal with these situations.

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RON AVI ASTOR: Even if they're not a victim of bullying, even if they're not the one doing the bullying, they may have friends. They may see a lot. They see how the school reacts to it or doesn't react to it. And there's a lot of moral judgments and issues of character that go around that. They also may not want their children to be in an environment that just lets very serious kinds of infractions go by, either by the teachers or the peer group. Most parents would want to know about that and get involved.

LL: So I guess the lesson there is parents should be paying attention even if their child isn't a victim, I guess.

VALERIE OUELLET: Yes. Parents should be paying attention even if their child is not the one who's bullied.

LL: Okay. So interesting and disturbing. Thanks very much for your work on this reality, Valerie.

VALERIE OUELLET: Thank you.

LL: Valerie Ouellet is a senior dad, a journalist with the CBC in Toronto. You can find her story on Canada's data gaps and read more from our series School Violence, including the results of the CBC News groundbreaking national survey of students on our CBC News app or our Web site, cbcnews.ca. To learn more details about the violence Canadian students report experiencing and how schools are responding, watch The National tonight on CBC TV at 10 p.m. across the country. And if you want to reach us with your story or have questions about school violence. Email us at schoolviolence - All one word - schoolviolence@cbc.ca.

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LL: Tomorrow on the Current in 2017, Ronan Farrow was working for NBC News on an investigation into allegations of sexual assault and harassment by movie mogul Harvey Weinstein. It promised to be a bombshell, despite what Farrow considered solid research and sources, NBC killed the story. His investigation was eventually published by The New Yorker magazine and helped launch the Me Too movement. Now, in a new book, Ronan Farrow documents the story behind that story, the intricate web of power and influence that protect sexual predators.

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RONAN FARROW: This thing should have been on air. We had a recorded admission of guilt from Harvey Weinstein secure during a police sting operation. We had him admitting not just to a sexual assault, but to serial sexual assault, saying, I'm used to that. We had multiple named women in every version of this story. It was an expansive body of reporting. But the point wasn't that it was done at any one of those points in time, or that it couldn't have expanded if they had wanted it to. The point is that they ordered us to stop. And that is the striking kind of smoking gun tell that this was not a journalistic decision that was happening. We were told to cancel interviews with rape victims. We were told to stand down and not take a single call on this subject. I was threatened that I was going to be exposed as having been terminated and let go from the company if I ever disclosed that NBC had anything to do with the story. And in this book, I, over the course of several years of investigative reporting, uncover what was happening at this company and the secrets that this company had that were under threat of exposure as Harvey Weinstein was bearing down on them in a whole slew of secret conversations and e-mails and contacts that were going on behind our backs.

Tomorrow on the current guest host, Duncan McCue talks to Ronan Farrow about his new book, Catch and Kill: Lies, Spies and a Conspiracy to Protect Predators. CBC News is next. Then the incredible story of Mighty Moe.

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And then this man came up to me and he had a stern look on his face. And he said, Did you run that whole race, young lady? They just couldn't believe. They were disputing it because they couldn't believe that a kid, a girl could run the marathon and at that speed.

Maureen Mancuso has been called the marathon record holder the world forgot. And she broke that record when she was only 13 years old. She joins me to talk about that achievement in our next half hour. I'm Laura Lynch and you're listening to The Current.

Higgs on Trudeau

Guest: Blaine Higgs

LL: Hello, I'm Laura Lynch, and you're listening to The Current.

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LL: Still to come, twin girls in China are celebrating their first birthdays this month. But Lulu and Nana are no ordinary toddlers. They're the world's first gene edited babies. It's a fast moving science that bioethicist Francoise Baylis has worried about for years. She joins me in half an hour. Before that: In a minority parliament, cooperation is key.

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LL: Prime Minister Justin Trudeau sounded like a man who just won a landslide election victory on Monday night.

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JUSTIN TRUDEAU: From coast to coast to coast tonight, Canadians rejected division and negativity.

LL: But yesterday at a news conference in Ottawa, the tone had changed.

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JUSTIN TRUDEAU: Canadians gave me a lot to think about on Monday night as they returned us in government, but with a clear requirement to work with other parties on the priorities that Canadians spoke clearly to during the election campaign. And I'm going to take the time necessary to really reflect on how best to serve Canadians and how to work with those other parties. I think that's what the people who voted for me and the people who didn't vote for me expect. And I'm going to make sure that we get down to work by doing that.

LL: Many of the people who didn't vote for him are in the provinces of Alberta and Saskatchewan. Not one Liberal MP was elected in either province. The prime minister has made it clear there will be no coalition government. Instead, he'll need the cooperation of other parties. But he'll also need support from provincial premiers, which might not be easy.

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LL: There is more we need to do, and I look forward to conversations with all premiers across the country about what the next things we should be doing to better serve Canadians.

LL: One of the premiers Trudeau has reached out to is Blaine Higgs. He is the progressive conservative premier of New Brunswick. And we reached Premier Higgs in Fredericton. Hello.

BLAINE HIGGS: Good morning, Laura.

LL: You had a conversation with the prime minister yesterday.

BLAINE HIGGS: Yes, I did.

LL: And what did you talk about? What was the gist of the conversation?

BLAINE HIGGS: Well, he called I think he was calling all premiers, and I obviously [unintelligible] him, congratulating him on his victory. We discussed the pros and cons of being in a minority government. And I said that I would certainly prefer the size of his minority than the mine. And as you know, I'm pretty close to the wire here. He did discuss about the challenges. And I indicated what I thought his biggest challenge was. This was putting our country back together. We've got this division now with the rise of the Bloc that seems to come up every now and then just to reassure they're concerned about nationalism. And then now with the real economic situation in Alberta and Saskatchewan, that has driven both of these provinces to think, look, what are we doing here? And I've been very vocal on that, too. I mean, we wish they'd been very accommodating with us. And the resource ministers spent and paid for a lot of our families over the years. And I'm a recipient of that and not a proud recipient, [unintelligible] and in many ways trying to change that through, you know, supplies and coming here. So I said that's a big challenge. And it's been created, you know, by the policies that have existed in the last four years.

LL: And what did the prime minister have to say to that?

BLAINE HIGGS: Well, obviously, you know, he believes that a lot of it is related to the need that we must, in terms of climate change, and we have to forge ahead. But he recognized that was going to be a major challenge, that he would be doing his best to address those concerns.

LL: Did that give you some level of comfort?

BLAINE HIGGS: Well, I guess, you know, for me, talking about the carbon tax, it's always been a concern for me that our bigger goal is going to be to meet our emission standards and emission targets and then keep moving in a cleaner and greener way. And it's always been my view that we should have polluter pays, which is the prime we put forward. And then we didn't need to charge people more to travel here in New Brunswick because of the carbon tax and more tax on fuel. You know, even though at this point time was, oh, well, there's a rebate, but we know any new tax that opens the door to a government of any kind, it becomes just a way to keep raising it and raising it. And this, being a new tax, this will be one that people feel they've got to pay more in order to clean the environment, it's an open end for a government to just charge money to taxpayers.

LL: And yet you now say that you're going to look at supporting a carbon tax. Why?

BLAINE HIGGS: Well, because, you know, at some point you look yourself and you say, well, how long do I keep beating my head against a wall here before I deal with this. So in this election, if we would have had the position that happened in Saskatchewan and Alberta with such a strong mandate that, you know, this government - the federal government - is not meeting the needs of either of those provinces. But in the Brunswick, we only had three seats out of the tent with six going to the Liberals and one to the Greens. So both who were very in favour of carbon tax. So the people of the province have basically said, look, we accept a carbon tax, we accept this program because it's already been downloaded on us. We're already paying know in New Brunswick. We received the backstop. So the federal government already imposed this on us. So now that is here. Well, then I might well find a way to make it to the best interests of New Brunswickers.

LL: Because you believe that was the message from the federal election. I'm wondering then, based on that reasoning, should Ontario do the same thing?

BLAINE HIGGS: While it'll be for Ontario to decide. I mean, they're in a similar situation in that regard, it would seem. But that'll always be their decision. Now, having said that, we have our program in place. We did put a program forward, a carbon plan. It did not include a carbon tax. It included all other aspects. And we're waiting for the federal government to accept that or reject it. One or the other. They said we'll deal with it after the federal election. So I mentioned that to Mr. Trudeau as well. It'd be nice to get a response. So let's get this sorted out. He agreed. So they're working on that and putting a focus on that. So we'll see where that goes. Because our proposal at that time did not include a carbon tax. But I guess the other point I would raise is, in speaking with my colleagues across the country, I mean, I've only spoken with one ahead of this discussion.

LL: Who was that?

BLAINE HIGGS: With premier Moe.

LL: Okay.

BLAINE HIGGS: And you know, this whole concept of the of challenging in court, the carbon tax, it's more than just a carbon tax. It is a challenge or jurisdictional right, for the federal government to impose this on provinces.

LL: We actually have some tape of Saskatchewan Premier Scott Moe talking about what he wants from the prime minister. Let's just listen to that.

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SCOTT MOE: So I heard the prime minister's speech last night. He wants to support the people of Alberta in Saskatchewan. And I would say this: He can support them by supporting a new deal that includes a cancelling of the carbon tax, a deal that would restructure the equalization formula so that it is fair to all provinces, and a new deal that would allow us to get our products to market. If the prime minister of this nation is truly supportive of the people in this province, he will reach out and talk to us about a new deal with Canada.

LL: So listening to that and knowing that you two spoke yesterday, you say you want to try to repair the fractures in the country and yet you to stand apart now on the issue of the carbon tax.

BLAINE HIGGS: Oh, we're not apart on that. He recognizes that I don't have the backing of the people of the violence like he does. I mean, that is the difference. That's a huge difference. I mean, I didn't want to implement a carbon tax, but it has been downloaded on us. We do have it. The people of the province vote to support the federal position of a carbon tax. So, you know, at what point do I look at that and say, here, let's move. Let's figure out what is the best deal for New Brunswick?

LL: Did he accept that?

BLAINE HIGGS: He understands the position. I mean, absolutely. But it doesn't change the challenge of the federal right to actually imposes on us. And the fact that I will continue to work with them on challenging this, because it could lead to other things. I mean, how many other things could could come along that the federal government say, well, I have a right to just impose my will upon you. And so we need to establish the rules around that independence, because that is a concern of where that goes.

LL: But let's listen to one more of your fellow premiers. This is Brian Pallister of Manitoba.

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BRIAN PALLISTER: I believe our government will benefit the country best by never forgetting that we're all part of Canada here. I've been part of minority governments. I've been part of her opposition when there were minority governments. I can tell you that the work of government must go on. I think you've got to work together. You know, you work. You overcome your difficulties together. Don't threaten to leave. I listen to this from Quebec for years and I don't like listening to it from western Canadian friends of mine. I'm going to make the country work. We work together on it. We make a commitment to it. It's a relationship.

LL: That sounds much more conciliatory. How do you react to his words?

BLAINE HIGGS: Well, I mean, kudos to the Premier Pallister in relation to the idealism of, yes, we want to make this work because we all do. And I hate- because I believe strongly, unlike Quebec, I believe strongly that the western provinces do not want to separate. I mean, I think it's quite clear with the surges of the Bloc that there's a there's an appetite in Quebec that is genuine. You know, let let's maybe try to get the best of both worlds. But the end of day, let's separate from Canada. Well, I don't think that Albertab and the Manitoban, Saskatchewan feel that way at all. But their economy has been devastated. Not so much amount Manitoba, but Saskatchewan and Alberta, more so by the policies of this federal government. So, I mean, Premier Moe's points of if there's a new deal, then let's make it happen. I mean, I share and as I say, I'm a recipient of the transfer payments. I wanted to get access to foreign oil. I wanted to create an industry here, but an industry that's a transition into a greener economy. Because at the same time, we're moving in that direction. We're all moving in this direction. We can't charge people more in our province.

LL: Premier Higgs, I'm wondering overall, though, how much more difficult do you think it's going to be, especially given our conversation, for Ottawa to meet the needs of Canadians from coast to coast to coast, especially with a minority government?

BLAINE HIGGS: Well, thanks to the minority government. I don't think it's going to be so difficult for him, because, I mean, I think between himself and the NDP, they're like-minded enough that theycan work forward. However, you're right in the sense of the NDP position on the transport pipeline. There can be a challenge in that regard. But then again, you think about the conservative numbers as well. Who would be in favour of that? So he can move those files on a case by case basis. And I think he's got a very strong [unintelligible] government. So with the numbers. So if he has a will, there's a way, I guess, I would say.

LL: Premier Higgs, thank you for your time.

BLAINE HIGGS: You're very welcome. Have a good day.

LL: Blaine Higgs is premier of New Brunswick and we reached him in Fredericton. We did request interviews with Saskatchewan Premier Scott Moe, Manitoba Premier Brian Pallister and Alberta Premier Jason Kenney. They were not available. If you'd like to listen to guest host Kathleen Petty's interview with Premier Kenney on the current during the election campaign, you can visit our Web site cbc.ca/thecurrent.

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Mighty Moe

Guests: Maureen Mancuso, Kit Fox

LL: You're listening to the Current on CBC Radio One and Serious XM. I'm Laura Lynch. When Kenya's Brigid Kosgei broke the women's marathon world record earlier this month, it made headlines around the world. But more than 50 years ago, another marathon record was set. This one in Toronto. There was no fanfare. In fact, the record and the runner were almost lost to history. At the time, competitive long distance running was entirely dominated by men. But a 13 year old girl, Maureen Wilton, now Mancuso, ran a marathon in three hours, 15 minutes and 23 seconds. A new book tells her story. It's called Mighty Moe: The True Story of a 13 year old woman's running revolutionary. Maureen Mancuso and Mighty Moe co-author Kit Fox join me. Maureen, start by taking us back to that race on May the 6th, 1967.

MAUREEN MANCUSO: My coach had to fight to get me to be able to run it. I knew people weren't onboard even at that day. And so I was apprehensive. And then when I got to the starting line, it was a similar scene to the first day of practice where my mother's going, go get in the starting line, they're going to start the race. And I'm like, yeah, yeah, I will. And I look up and there's like 28 men standing there. And I'm wondering what everybody is thinking. So I delayed a bit probably within under five seconds of the gun going off. I just held it back. And when I got on the starting line, they, a lot of them, turned around and looked like confusion. They didn't know why I was getting on the starting line.

LL: You set a new world record. How did that feel?

MAUREEN MANCUSO: Well, they really called it a world's best performance. They wouldn't call it a world record. At that time, it wasn't four years later that they actually labelled it as a world's record. It was very confusing at the time because we didn't have big clocks coming in. I didn't know what my time was. I believed I had not made the record when I crossed the finish line. The kids came up and they congratulated me and I said, thanks, but I didn't get the record. And they're like, no, yes, you did. So that surprised me. I said, no, no, I didn't. My mother had a problem with her watch and she said, no, I was way off and I couldn't possibly have made it. So I was steadfast. No. My mom says I didn't make it. And so they were like, no, no, no, you did. You did. And so after they convinced me, I was just like, oh, good. And then this man came up to me and he had a stern look on his face. And he said, Did you run that whole race, young lady?

LL: Oh, he didn't believe you'd run the whole thing yet.

MAUREEN MANCUSO: Correct. So I said, yes. And then when he laughed, I said, what was that about, to the kids around me. And they said, oh, that they just couldn't believe. They were disputing it because they couldn't believe that a kid, a girl, a woman could run the marathon and at that speed.

LL: You could run it at all and then do it at that speed. So, Kit, you've met Maureen and you've done a lot of work with you. You've also looked at the larger issues around this. What was the thinking around women not just competing in long distance races in the 1960s, but even just running in general?

KIT FOX: You know, it's just sort of a historic societal issue that we've, you know, we've had over the past six centuries. Physical activity was something that women were just not supposed to necessarily take part in, particularly competitive sports. In particular with long distance running, there was these health concerns which were ill founded that, they would lose the ability to reproduce that there's a famous quote that their uterus would fall out and that they would faint at the at the end of a race. And in fact, in one of the early Olympic Games, I believe it was in the 1920s, there was this pretty infamous 800 meter race where it was the first time women were allowed to run that distance. And it was a really hot day. And these women were running as hard as they possibly could. And the finish line, you know, a couple of them sat down as it's like a typical after a hard race, but it was almost a game of telephone where the news reports just got wilder and wilder about women collapsing and almost dying. And so that moment sort of set in, you know, set the tone for the next several decades where it was just something that was perceived that women weren't capable of running anything longer than a couple hundred meters. And slowly, that was chipped away and that was chipped away by women like Maureen and coaches who saw their capability. So it would go up to, like, they could do a two mile race and then a five mile race and so on and so forth.

KIT FOX: But the 800 meters, they didn't run that again for four decades.

KIT FOX: Exactly. I mean, it sounds if you read these news reports, it sounds like people should have died because it was so dramatic when, in fact, again, if you look at some first eyewitness accounts that wrote about it, it was just a typical hot day, tough race.

LL: Okay, well, Maureen, let's go back to you. Did anyone actually officially mark your achievement? Give you a medal? Say congratulations.

MAUREEN MANCUSO: So, yes. Yes, absolutely that day. So there was a man in the club. We were very close. I was like as another child in their family. And he was there that day. He is actually ran the last little bit of the run with me. And he went out into his garage. He built a trophy and he bronzed the shoe and he put a picture on it as well.

KIT FOX: But nothing of that sort happened right after that finish line. And one thing I think it's important to contrast here is at the time, even seven years earlier, the 1960 Olympics, 1964 Olympics, you have one of the marathon greats, Abebe Bikila from Ethiopia. You know, these men's marathon races where he broke that world record, he would arrive into these stadiums with thousands and thousands of people cheering him on and he would break this world record and, you know, get this fanfare. And if you just want to contrast that for a second of Maureen doing the same accomplishment to a scene of maybe a couple dozen people and not just, you know, obviously some of them were very supportive, but you have people who are who doubted her accomplishment. And so she doesn't get that moment to stand on the podium. She doesn't get a gold medal. Her family friend has to take the time to support and mark that achievement. And so it just kind of this amazing contrast of these same accomplishments.

LL: No kidding. I have someone else now I want you to hear from. Listen to this.

SOUNDCLIP

Hi, I'm Carolyn Mancuso and I am Maureen's daughter. The first time, I found out that she ran a marathon, probably would have been I was eight or nine years old and I had just run a cross-country race and done decently well for the first time. And I was standing in my brother's bedroom with my grandma and my mom. And for whatever reason, I looked at my grandma and I said, did my mom ever run? And she looked at my mom and said, You haven't told her?

LL: Okay. The cat got out of the bag at that point, Maureen. I want to talk to you about Carolyn in a second, but this raises the question, what happened to your relationship with running after you set that world record?

MAUREEN MANCUSO: I still run for another couple of years. And then, you know, I was 15 and I left it after that. I wasn't as excited about the marathon anymore just because of, I guess, the controversy. And I also found it a long time to run. Not the difficulty of it, but it was just a long time for a kid to do that.

LL: So what? Tell me, what did it feel like watching Carolyn start to run competitively?

MAUREEN MANCUSO: Well, it brought it all back. And it was it was amazing. And it was so much fun. And I used to drive her up to practice up at York University. And I'd sit in the stands and I'd watch. And I'm like, why are they doing that? Questioning ladder workouts and things that I just had never heard of and we never did in those days. And I started watching and I thought, you know, I should get back on the track.

LL: Well, that's great. Kit, how has been women's distance running evolved since that day when Maureen ran the marathon and got questioned as to whether she'd even finished?

KIT FOX: I mean, it's a totally different world. Just to put it in perspective, I believe the year was 2012 when women finally surpassed men, at least in the U.S. in terms of the amount of distance race finishes. You know, it's in the millions. That trend has stayed constant since 2012.

LL: Maureen, you sound so humble about your achievements. I'm wondering how you see yourself in the history of women's running.

MAUREEN MANCUSO: I love I love that people have caught on to my accomplishment with the marathon. And ever since the running world has given me so much support and acknowledged that run and my accomplishments.

KIT FOX: One of the best parts about this book writing experience for me and my co-author, Rachel Swaby, has been honestly trying to convince Maureen how important she's been to the equality and women's distance running, because as you can hear, Marina is so humble. And so what we do in this book, in a large part of the book, in going into not just Maureen's race, but how it fits within and where we have when assistance running now, is we actually can trace a line from her marathon to some of the recent successes that women's distance runners have had. So really briefly, Maureen runs her race on May 6, 1967. That news does spread around the world. There's some controversy. Over in Germany there was a coach whose name was Dr. Ernst Van Aaken, and he hears about that run. And he's been coaching a couple women and he sees the time that Maureen ran and says, well, I think that's definitely possible to beat in some of these other experts and other coaches sort of laughed him off. But he said, no, I'm going to I'm going to plan a race. He had these two girls run. They ended up beating that record. That news gets spread. And so, you know, the analogy we use is kind of like kindling that lights this fire, that grows and grows. They end up breaking that record. It moves on into the 70s. You have people like Cheryl Treworgy, who was, I believe the first woman to break three hours in the marathon. She was the first woman in the U.S. to earn a athletic scholarship at a college because of her running. And that leads all the way up into Shalane Flanagan winning the New York City marathon and Shalane Flanagan happens to be the daughter of Cheryl Treworgy, who was a woman that Maureen ran against at a Cross Country championships in the 60s. So even though Maureen's race happened in 1967 and sort of fell off and the story got hidden, it had this profound impact on women assistance running equality and it did help to inspire where we are today.

LL: See, Maureen, how do you feel hearing that?

MAUREEN MANCUSO: I think grateful. Thank you, Kit, for the kind words.

MAUREEN MANCUSO: You are eminently humble.

KIT FOX: I know.

LL: Well, Maureen and Kit, thank you so much for talking to us today. And Maureen. I didn't know about achievement back when it happened. I was one of those who didn't know. So let me congratulate you now on your world record.

MAUREEN MANCUSO: Thank you very much.

LL: All right. Thanks to both of you.

MAUREEN MANCUSO: Thank you.

KIT FOX: Thank you.

LL: Maureen Mancuso and Kit Fox, co-author of Mighty Moe: The True Story of a 13 year old Women's Running Revolutionary. Coming up, four people with genetic diseases gene editing offers the hope of producing healthy babies. But once we start manipulating genetic material, where might the experiments? And that's what worries bioethicist Francoise Baylis. She's my guest in our next half hour. I'm Laura Lynch. You're listening to The Current.

Bioethicist warns against using gene-editing technology to solve social problems

Guest: Francoise Baylis

LL: I'm Laura Lynch, and you're listening to The Current.

SOUNDCLIP

Two beautiful Little Chinese girl named Lulu and Nana came crying to the world as healthy as any other babies a few weeks ago.

LL: It was a baby announcement like no other. Lulu and Nana were the world's first gene edited babies. As embryos, their genes were altered to give them protection against HIV. The announcement from Chinese scientis He Jiankui a year ago shocked the world, and he clearly understood the ethical minefield he'd stepped into.

SOUNDCLIP

For a few children, early gene surgery maybe the only available way to heal will prevent inheritable disease and prevent a lefttime suffering. We hope you have the mercy for them.

LL: But his plea didn't quell the criticism. He Jiankui was labelled a rogue scientist and dismissed from his university position long before Lulu and Nana were born. Francoise Baylis was raising concern about the implications of manipulating genes. She is a member of the World Health Organization's Expert Advisory Committee on Developing Global Standards for Governance and Oversight of Human Genome Editing. Her new book is Altered Inheritance: Crisper and the Ethics of Human Genome Editing. And Françoise Baylis is with me in our Toronto studio. Hello.

FRANCOISE BAYLIS: Hello.

LL: Can you give us a primer on how crisper works?

FRANCOISE BAYLIS: Crisper is, if you will, the latest of the technologies that allow scientists to manipulate human genetic material. So there are other techniques that we've had over the years and scientists have tried to use them to develop gene therapies. But this particular technique, which really has two parts to it, is a guide RNA. So the RNA matches up with your DNA somewhere in your cell and then you have something we call the molecular scissors, which is taken to the right spot, which makes a cut in the DNA. It's called a double stranded cut because our DNA is a double strand. And then what happens effectively is you try to make a particular change there. The change could be the addition of genetic material, the deletion of genetic material, the modification of genetic material. But by and large, you're trying to change the DNA in the cell in order to make a change in the human.

LL: Okay. This kind of manipulation can be done on different types of cells. And I wonder if you can tell us the difference between germline genetic editing and somatic genetic editing.

FRANCOISE BAYLIS: Yes, well, that's an extremely important difference. And I think everybody needs to understand this. So somatic cells are basically your body's cells. So all the cells in your body - except your reproductive cells, so if you're a male, your sperm. If you're a female, your eggs - all of those cells, the somatic cells, if we make changes in those cells, we're making changes in a person, in a patient. And when that person or patient dies, those changes effectively die with the patient.

LL: So those cells are particular to the one person.

FRANCOISE BAYLIS: That's absolutely right. Whereas when you make changes to the germ line, we're now talking about your gametes of, again, the sperm, the eggs or the early human embryo, what you're really doing are making changes that will be passed down in perpetuity to all of the children, the children's children, et cetera. So at that point, you're actually taking over - I would argue, anyhow - you're taking over the evolutionary story because you're actually going to change the genetics of subsequent generations.

LL: So germline is what you're most preoccupied with.

FRANCOISE BAYLIS: Exactly. And if I can, there's also a really second important difference when we talk about germline, what's the kind of sounds that we're manipulating. And there are some scientists that are doing that work in the lab and it's just under the banner of embryo research. We have other scientists and you heard about Jiankui He, that take it further. So they've done this work in the lab. They've modified a human embryo, but they put that embryo back into a woman. And then I refer to that as heritable genome editing because it's both that you're manipulating the germ cells, but you've transferred those cells to a uterus in the hope of having a newborn. And in that context, you're really taking a different step forward.

LL: Right. And so what are the risks for women who have agreed to take part in these clinical trials for crisper?

FRANCOISE BAYLIS: We talk about these reproductive tissues, right, your gametes or the human embryos as if they're just there on the shelf or in a freezer. You just go pick up what you need and you take it into your lab and you start manipulating them. Well, you have to get those tissues out of the human body. And it's relatively easy to get sperm from a male. It's actually quite onerous to get eggs out of the woman. She's going to have to undergo drug regimen. There are the risks of something that we call super ovulation. And those are quite serious. I mean, there are women that have ended up in hospital as a result of that. And we have that information from women already who donate eggs in the context of reproduction. But. I think it's very different to participate in gifting or selling, depending on what country you're in, gifting or selling eggs for reproductive goal versus gifting or selling those eggs for a research objective. And many of those embryos will simply be destroyed. Taking it one step further, there are the women who are the producers of these eggs, but they're also the women that at some point might be being asked and might agree to actually become pregnant with these genetically modified babies. And we just don't know what the potential consequences could be there. They might be confronted with decisions about terminating a pregnancy. They might be confronted with the birth of a child with serious complications.

LL: And what risks to the baby who would eventually be born, at least sometimes out of these trialsÉ.

FRANCOISE BAYLIS: I think there'll be a number of very significant biological risks. And, if I can, they sort of fall into a few broad categories, but the ones that are easiest for people to appreciate are what we call off target effects. And basically, remember, I talked to you about we have these molecular scissors. They're going to go into the cell. They're going to make this cut. We're going to do these changes. That sounds so much more precise than it really is. And so one of the things you could have is these scissors make cuts in all the wrong places.

LL: they don't know where they're actually going.

FRANCOISE BAYLIS: What they're supposed. So the RNA guide is supposed to take them to the right place, but we have reason to believe that mistakes can be made. And you would get these off target effects. We also have another concern, which is actually called on target effects, meaning it made the cut in the right place. But maybe because of our own limited knowledge of DNA, you've turned on a cancer gene of some kind. And then what have you done? So a lot of people tend to talk about this technology as though it will be safe and effective. It'll be wonderful. So we're only going to have happy stories that, you know, we had a person that was potentially at risk of giving birth to a child with heritable disease. We're going to offer them this intervention. Everything will be fine. The child will be healthy. The child might not be healthy. It might not work. But beyond that, it might not work. And we might have done more harm.

LL: But let's talk about a heritable disease like Huntington's. Could the gene be edited so it wouldn't be passed on to future generations?

FRANCOISE BAYLIS: That's certainly the goal that some scientists would be wanting to pursue. And part of what they'd be saying back in defence of wanting to pursue the sciences, if we ever get good enough at doing this in individual patients, were able to make changes to their somatic cells and hopefully cure them of this illness. Why would we want them to go on and reproduce and have children with this same heritable disease? Why not fix it once and for all? And I think part of the concern there is to say these aren't just private reproductive choices. You're actually talking about taking the species in a different direction. You're actually saying that we think it's appropriate to start designing the next generation.

LL: Wouldn't that be a good thing to be able to get rid of Huntington's disease?

FRANCOISE BAYLIS: Well, it might be, but again, I think you have to pay attention to the fact that we'll have potential harms to the children. Another thing we might have a broader societal harms. We don't know how people will be able to access this technology. It's not going to be cheap. So let's just throw it a hypothetical million dollar therapy for Huntington's disease. How many people are going to be able to afford that? And you might think, well, that's not a problem. We're in Canada. The government funded health care system will pay for that. But in fact, if you look at reality, we're not in the business of printing money. Governments have to make choices between whether they're going to invest in the road, the arts and there's only a certain percentage that goes to health care. And one of the challenges we have right now is that percentage is so high. It's not clear to me that this technology should be developed for what I put under the banner of personalized medicine. And that may be what this technology could be really good for our public health interventions where you're really looking at prophylaxis rather than these kind of one off treatments.

LL: Why is the possibility of gene editing an end to deafness become so controversial?

FRANCOISE BAYLIS: It's extremely controversial because people who are themselves hearing impaired or deaf have said we don't think we have a disease. So why are you coming after us and treating us as patients for whatever your particular project is? We have a rich, fulfilling life. We have a language we are able to, you know, enjoy our place in this world. And you're the ones that are sort of in some sense marginalizing us, naming us, othering us. And certainly a number of my colleagues who are members of the deaf community will say this is a explicit eugenic project. You're basically trying to get rid of me and people like me. And in that context, you know, what resources then over time will disappear will no longer be there for me and will, in fact, very dramatically affect my quality of life. While you're busy thinking that you're building a better world full of perfect beings, because you've chosen to put me in the category of defective. Well, I don't think of myself as defective. And why should I? And why should you encourage other people to embrace that perspective?

LL: Earlier we heard about Jiankui He. And when he announced that he'd edited the genes of twin girls as a way to prevent them from contracting HIV, that's become something of a debacle. Why?

FRANCOISE BAYLIS: I think there's many reasons why people are concerned about it. So one reason is most scientists would say at the very least, it was premature. You didn't have the data in terms of safety and efficacy to do that. And people are concerned about safety and efficacy, I think, for obvious reasons. Well, safety, you don't want to hurt people. Efficacy, you don't want to sell them a bill of goods if it doesn't work. And so I think a number of people would say the science wasn't there. It wasn't ready. Other people would go further and say, look, even if the science was there and it was ready to go, this wasn't an important enough issue on the basis of which to make those kinds of dramatic changes because of the potential harms and consequences. And so they would have said, look, HIV is not that terrible in the grand scheme of things. Why, they would say, we have treatment alternatives that we can make available to patients if they have HIV. It was also say, you know, when children are born, we could teach them about, you know, appropriate behaviours in order to protect themselves from contracting HIV. And then if you go back even further, the argument would have been in the context of assisted human reproduction, you just would have done sperm washing and you would not have expected that the virus would have been transmitted. And so many people have said there are just so many other ways in which you should have responded to this need rather than doing this frontier science and racing ahead of everyone. But I actually I'm not among those who chastise him for being this sort of rogue scientist who went out and did something. I think he did exactly what we trained scientists to do.

LL: Well, I was going to ask you, in the rest of the scientific community around the world, it is there that push other people who are saying, I want to be first or are there people who are saying, I want to make money or what's going on there?

FRANCOISE BAYLIS: People have a lot of different motivations, certainly being first, getting a Nobel prise is a big motivation for scientists. Many scientists have collaborations with various companies and they have an interest there in terms of moving it forward. I think, however, what we need to pay attention to here is the fact that many people genuinely are just saying they want to do good in the world and that they believe they can use their talents in order to pursue health care interventions. But the reality with this technology and any technology is when you develop it, it can be used for good or evil. I mean, a very simple example. Take a hammer. You can imagine a judge using that as a gavel. You can also imagine, you know, working for Habitat for Humanity and building homes. But it can also be a murder weapon. So I think one of the things that becomes really important when we're developing this technology, I think we have an obligation to exercise the moral imagination and think about what are the wonderful things it could do. What are the ways in which it could be abused such that we actually have plans because we've anticipated some of those possible outcomes.

LL: You're raising some profound issues here. We've been talking about discrimination and the attempts to use this gene editing to try to prevent it. But could it also lead on the flip side to different kinds of discrimination if you actually went forward with it?

FRANCOISE BAYLIS: I think it will lead to discrimination in multiple ways. One of which a number of people are concerned about, which is this idea that it will increase the gap between the haves and the have nots. And the reason for that, as I mentioned earlier, is that this will be very expensive technology. So, quite frankly, you and I aren't going to get it. And in that context, what happens when you're really looking at a very particular elite strata that will have access to this? And in the book, I explore what's the idea or what's the world that you imagine if somebody who already has socio economic advantages now actually is going to have a genetic advantage because they'll take that advantage and basically inscribe it in their DNA. So we now believe that if you if you work hard, if you try, etc., there's possibilities for you to have success in this world. But if it's, you know, from the beginning set and you're not going to have access to the tools for improving yourself or your situation, you could find that this gap, which people are already worried about - We talk about the one percent. We're worried about what's happening in terms of, as I said, the gap between the haves and the have nots. And the worry here is that we'll now also do this with our biology.

LL: Let's drill down into this a little bit more with some examples that you raised, that there's a scenario of black parents who may decide that crisper is a way to ensure their children don't suffer racist discrimination. Explain that to me.

FRANCOISE BAYLIS: If you really want to think about this technology narrowly in the context of health. So we're not thinking about enhancement or not thinking about making superhumans. We're just saying we want people to have good flourishing lives. I'm saying imagine this scenario. A couple comes forward and they say, look, the world that I live in, unfortunately, has considerable discrimination. We have empirical data which shows that a young black male living in this particular context, community, etc. is at increased risk of ending up dead, if not in jail, et cetera. What would we say if somebody said, I actually have figured out the best way to help my child is to make sure that they can't be the victim of that kind of discrimination. So I'm going to make sure that my child will have a different colour skin. And in that context, I'm saying if other parents say, well, I don't have that particular challenge, but I really want to make sure that my child is well educated or my child, you know, has access to sporting activity, et cetera. There are many ways in which we support those parents. We say to them, that's great, you're providing opportunities for your children, you're expanding their horizons, et cetera. In theory, this couple could say, I'm just trying to ensure that they have a normal lifespan. I'm not even trying to do anything fancy. Now, part of the reason I bring that up is I want people to stop and think about what does it mean to identify a social problem and then to think that it's reasonable to bring a biological solution to a social problem. I would like to think that we would step back and say we have a real social problem. Let's fix it. Biology isn't the answer. And I think that this is a very dramatic example, but I think that that could be brought back to other things. When you say, for example, we don't want any more children with Down syndrome. How do you think it's not any different from that? You're basically making a claim that only certain kinds of people are worth having.

LL: Sounds like eugenics.

FRANCOISE BAYLIS: It absolutely is a kind of eugenics. And I know people think, you know, that that's always pejorative. It's not. I mean, it just means bringing about a better life in some sense. But the question is about.

LL: Who's better?

FRANCOISE BAYLIS: Absolutely. It's an extremely subjective concept. And what's better for you may not be better for me. I mean, you know, would it be great if we were all six feet tall? I mean, is that what we should be aiming for? Over the years through nutrition, we have, in fact, increased the height of our species. Right. And if you go to older buildings, hundreds of years older, you know, the doors aren't tall enough for us. So, I mean, we have in many other ways already manipulated our genetics.

LL: But that's called evolution.

FRANCOISE BAYLIS: Well, and what we're doing here is we're saying we want to take over that evolution. We don't want to have hundreds of 10 years and many generations in order to achieve these goals, because we actually think we know what the ideal human looks like and we want to speed that process up.

LL: Let's go into another area, though, because this is fascinating. Great athletes often have enhanced genetic abilities that allow them to become champions. Society celebrates them. We give medals, they honour them. Why shouldn't crisper give everybody that same kind of ability to become a great athlete? Isn't that just fair? Doesn't it level the playing field?

FRANCOISE BAYLIS: Well, certainly there are a number of people who make that argument and they say, you know, literally, elite athletes are already genetic freaks. I think there's a couple of ways that you should think about this. One of them is very similar to the reason why we don't have doped up Olympics. Right. We could just say, look, some people are cheating and doping. Why don't we just have the doped up Olympics here for those who want to cheat and we'll have the clean Olympics over here for those that don't want to? Well, one of my first responses there is that it's actually not a very good thing to encourage people to destroy their bodies for our entertainment. Right? And so that's one of the things I want us to think about. Well, what happens if we push it even further and we encourage people to genetically modify themselves for our entertainment? And I think that part of what sport is supposed to be about is challenging yourself. Part of what I think's at issue here is not reducing ability to just genetics. Elite athletes are not just people with, you know, privileged genes. In some sense. These are people with a certain kind of drive and determination, a certain kind of commitment. You can't just say I've got the right genetics and I'm going to be a star athlete. You still have to train. You still have to do all of that, because who you are is a function of your genes and your environment. People with different genes, but a better context for training, for support, etc. can excel and, you know, outdo people with other kinds of genetic advantages. So I think basically, what we're trying to say is if we're going to make some of these changes - because I can understand why somebody would think it's a great thing to do - we really have to think about the goal and the objective. Whose needs are we responding to in this case? Is it about our own interests in having people display a certain kind of behaviour? Some of these athletes have very short careers. Their bodies are destroyed. Do we really want to just keep adding the pressure to what people should do in terms of modifying themselves?

LL: So with all of these possibilities and all of these ethical questions going on, what do you want to see happen? What regulation, what how do you handle this going forward?

FRANCOISE BAYLIS: So. The book that I've written is A Call to Action, and what I mean by that is I think read a particular moment in time where I really want to encourage people to get interested in the science. I think the science is completely accessible. And so part of what I'm trying to say to people is you don't need to think about this as overwhelming. It's really complicated. I couldn't possibly have an opinion about this. I mean, you know, we explained it very simply at the beginning, right. You're looking to go and make a cut to the DNA, either add something, remove something, etc. And even the metaphor of editing is meant to help people think about this as the cut and paste function on your word processor. It's not that accurate as we've been talking about it, but I think part of what I'm trying to say to people is there's an opportunity to become science literate and to have also ethics literacy, and to understand that if we are on the cusp - and I think we are - if we're on the cusp of taking over the human evolutionary story, you have a right to have an opinion about that. You have a right to be consulted, because, in fact, I think the human genome belongs to all of us. And when I say that, I understand it's a metaphor, there is no one thing out there that is 'the' human genome, but it is pretty much the only thing we all share. And so that's why I think if we're going to start making changes, we ought to weigh in on what are the goals and the objectives. Why would this be a good thing? And in that, we help to direct the science. And I would like it to be directed towards what I put under the banner of the common good. And I think it's worth exploring. What do we think is the common good? So this isn't about saying everybody gets to just scream and yell whatever their opinion is. It's about saying you have an opportunity to understand what it would mean to go forward, make these kinds of changes, have them be inherited and to think about. Are there certain kinds of goals and objectives that are reasonable? Should those changes only happen in patients who are able to consent to those kinds of modifications? Or do you think it's appropriate that we should be, quite frankly, messing with embryos? And so what I'm trying to do is to say, let's think about what could be the benefits. Let's try to maximize those benefits. Let's pay attention to what could be the harms and how could we minimize those harms.

LL: And where is the discussion out here in Canada?

FRANCOISE BAYLIS: Right now, the discussion in Canada, I would say, is not robust. It's also not robust in a number of other places, partly because we're kind of overwhelmed with a lot of other problems. You know, I could talk about, you know, the climate change. We could talk about overpopulation, we could talk about threats of war, we could talk about resource depletion. And in that context, I understand this isn't top of mind. This is not the sort of thing where you're worried about, you know, can my kids get to school safely? Can I put dinner on the table, the kinds of things that people have to deal with on a regular basis. But I think what I'm trying to say is that if you manage to do all those things, so you manage to educate your children, you manage to put food on the table, et cetera. You ought to be thinking about what's the world there growing up into. And people are starting to do that with the climate. They're really genuinely starting to worry about what are we leaving the next generation. And what I'm trying to say here is that this is analogous to that. We're just not at the same point. Do we want to repeat the mistake and wait till we're at a crisis moment in terms of finally trying to unpack that? And I think one of the important things is we know that what's important about genes is their environment. That's what, in fact, explains what genes do or don't get expressed. So I'm saying as we pay attention to the environment, we should be paying attention to the genes within that environment, because if we go back to science fiction around this technology, you could have people make the following argument. Well, the air's not really good quality. The water is pretty polluted, et cetera. And we could say we should fix those things or somebody else could say, you know what? That's why we should modify humans. Like we should make them able to drink this polluted water, able to, you know, have this air, et cetera. And there are people who would think that that's how you respond to the problem. And so I'm saying, my goodness, let's not go down that path. Let's be aware at this moment in time that the two interact constantly and we need to pay attention to both. What becomes really important is to have open, honest conversation about goals and objectives. And if we step back a minute, that's part of what was the problem with Jiankui He. Nobody really knew that he was doing the science. I mean, clearly some people knew, but it wasn't public knowledge. That's the context in which people are worried, that if you're doing things in secret and we're just presented with a fait accompli, it's reasonable to ask, well, who decided you could just, you know, drag the world in this direction because you've done this? Many people believe that Jiankui He stepped over a line. Other people are really happy he stepped over the line, because now that it's done once, it'll always be easier for the next and the next and the next scientists to go.

LL: We will end it where we began. Thank you so much for a fascinating discussion.

FRANCOISE BAYLIS: Well, thank you.

LL: Françoise Baylis is a research professor at Dalhousie University in Halifax. Her new book is Altered Inheritance: Crisper and the Ethics of Human Genome Editing. She was in our Toronto studio. That is our program for today. Stay tuned to Radio One for Q. Saturday Night Live has been skewering the president of the United States for more than four decades. But in the Trump years, SNL has a much more combative relationship with the White House. Comedy historian and author Kliph Nesteroff traces the history of presidential satire. Earlier in the show, I spoke with Maureen Mancuso. She was only 13 years old when she set a marathon record. Her coach called another marathoning trailblazer to run in that race. So there would be another woman there for support. It was Katherine Switzer just weeks before she'd become the first woman to enter and run in the Boston Marathon. We'll leave you with her story. I'm Laura Lynch. Thanks for listening to The Current.

SOUNDCLIP

The morning of the race, it was snowing and sleeting so the snow would come down and melt on you and freeze your clothes. It was just horrible. And I was bundled up in a grey, warm up suit like one of the guys. And you couldn't really from a distance tell me apart from them. And history might have been changed. You know, if it'd been a warm day, I'd been in shorts and t shirt because the officials were pushing us into the starting pant area, pushed me into the starting area, checked off my number on their clipboard. And then when the gun went off down the street, we went and I thought, well, there's no problem here. And about two miles into the race, the press truck came by and it was a flatbed truck with photographers on the back. And I went crazy seeing a girl in the race and taking pictures. And I was wearing numbers and we were kind of white waving at them. You know, it was kind of a hi mom moment for the news when another bus came by that had the officials on it, including the race director. His name was Jock Simple, and he was known to be an angry, fiery Scotsman. He saw me in the race, assumed that I was making a mockery of his race, that I'd achieved this fraudulent entry somehow, and he jumped off the bus and went after me. And I didn't see him till the last second. And he grabbed me by the shoulders and the shirt and threw me back and screamed at me 'Get the hell out of my race and give me those numbers' and tried to get my numbers off. I was so scared. I can't tell you. I was just felt the bottom drop out of my stomach. And I tried to get away from him, maybe had me by the shirt and was pulling me. And my boyfriend, who is also running with me, who happened to be a 235 pound ex all America football player, threw across body block into Jock Simple and sent him out of the race onto the side of the road. And my little coach shouted, 'run like hell'. And off down the street we went like kids running out of a haunted house. And of course, this happened in front of the press truck. So the pictures of the whole incident were flashed around the world.

The Current Transcript for October 24, 2019

STORIES FROM THIS EPISODE

Prologue

School violence

Higgs on Trudeau

Mighty Moe

Bioethicist warns against using gene-editing technology to solve social problems

Thursday October 24, 2019 Full Transcript

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