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The Current Transcript for February 9, 2018

Host: Anna Maria Tremonti

STORIES FROM THIS EPISODE

Listen to the full episode

Prologue

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SOUNDCLIP

As athletes we're given this very unique and special platform, that we speak for people who feel that they don't have a voice.

DAVID COCHRANE: When his figure skates hit the ice in Pyeongchang, South Korea, Adam Rippon will join a small but growing and important club of openly gay athletes at the Olympic Games. Also joining that club this year's Canadian skater Eric Radford. When it comes to being out on one of the globe's biggest stages it still takes a lot of strength and guts to be yourself. But the message it sends can be truly world changing. We're starting today with a look at the Olympic movement this power to move and inspire real change in South Korea and right around the world and how much further it still needs to move. Also today: Ever sent away for a kid to have you DNA tested. It can be fun. It can be fascinating. It can also resolve in some surprising and flat out misleading conclusions.

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I still remember I got my genome report, opened it up on my computer sort of in the evening and the first thing that's sort of jumped out was ovarian associated hypo gonadism.

DC: Well thankfully that's not a condition he shows traits for but it's precisely the kind of confusing result that has Canadian researchers like him raising questions about how much we should trust genetic testing. More on their work and what it means for you in half an hour. Plus, meet Lucas the new Gerber baby.

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My biggest concern always with Lucas was how people are going to treat him. We didn't actually find he had Down's syndrome until he was born. He's had that twinkle in his eye and these all chucky cheeks.

DC: Yes there's something very special about this new face of a baby food company's ad campaign. In an hour, we'll have a wide ranging talk about the sometimes mixed signals society sends about children with Down's syndrome. I'm David Cochrane and this is the Friday edition of The Current.

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Gay at the Games: How Canada is hosting Pride House, a safe space for LGBT athletes at the Olympics

Guests: Mark Tewksbury, John Cho

SOUNDCLIP

A few years ago I made the decision to come out publicly as gay, spoiler alert.

DC: Figure skater Adam Rippon is already one of the star of this month's Olympics. He and his countryman skier Gus Kenworthy are the first ever openly gay athletes who compete for Team USA at the Winter Games. But neither athlete was impressed that U.S. Vice President Mike Pence was chosen to lead the U.S. delegation at today's opening ceremony. Gus Kenworthy shared his thoughts about that decision with Ellen Degeneres on Monday.

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GUS KENWORTHY: We are going into the Olympics and it's just incredible to see how times have changed because of people like you and athletes in the past and so many people that have paved the way, but then to have someone leading the delegation that's directly attached to LGBTQ community and a cabinet in general that just sort of stands against us and has tried to do things to set us back. It just seems like a bad fit. I feel like the Olympics is all about inclusion and people coming together and it seems like it's not really doing that.

ELEN DEGENERES: Yes I agree with you. I think it is a weird choice.

[Applause]

DC: The Pyeongchang event is setting a record for LGBTQ athlete participation though the number of publicly out athletes is relatively small, just over a dozen according to some lists out of nearly 3000 Olympians overall. Canada will be doing its part to make sure LGBTQ athletes from all over the world feel welcome at the games because they want local South Korean organizers failed to raise enough money to create a stand-alone Pride House, the Canadian Olympic Committee stepped in. Canada house will now double as Pride House. It's the kind of inclusive gesture my next guest has long advocated. Mark Tewksbury is an Olympic gold medalist in swimming. He is currently a director of the Canadian Olympic Committee and he is the author of the memoir Inside out: Straight Talk from a Gay Jock. We reached him in Calgary Mark Tewksbury. Good morning.

MARK TEWKSBURY: Good morning David.

DC: Tell me about Pride House, the role of plays at the Olympics why is it so important?

MARK TEWKSBURY: Well I mean it was very important. It started in 2010 in Vancouver and it was really a space that was meant to be safe for anybody LGBTQ, or their allies, within an environment where sometimes historically people felt really alone and isolated because there was no real representation for them openly and so that sort of closeted athletes stayed closeted to. We never knew if there were gay athletes in the Olympics because there was never anywhere for them to come out and identify.

DC: So what does it mean to you that in the absence of South Korea creating a pride house that Canada House is going to fill that void?

MARK TEWKSBURY: Well I was really impressed to hear that. You know I can tell you that as an Olympic committee in Canada I was elected last year. At the very first retreat that we had as an organization, diversity and inclusion became one of the top three initiatives that we really felt was very very important to pursue as a Olympic committee. So it's not surprising to me that Pride house couldn't be funded by outside organizations, that Canada stepped up.

DC: Walk us through what it means to have this, as an athlete who is maybe keeping their sexuality a secret. You competed at an elite level while keeping that secret. How was that for you?

MARK TEWKSBURY: Well listen I think what pride house represents is a spirit of inclusion and the number is almost irrelevant, if there is one athlete, if there's 12 athletes, if there's a thousand athletes. It's the idea that 'hey we're here, everyone is safe and we want everyone to be their authentic person to be their best'. For me that was just unthinkable back in the day when I competed. I mean there wasn't even a language to talk about what gay or lesbian meant. So it's just a complete another level. It's still early days like we said. There's not that many openly out athletes at Pyeongchang but I promise for every athlete that out, there's at least one or two that aren't.

DC: So what would it have meant for you as an athlete when you were competing to have a space like Pride house?

MARK TEWKSBURY: Well it just would have been... Thankfully I had a coach that created that space for me. So one of my coaches was a synchronized swimming coach Debbie Miller that created a space where I felt really safe. I could share my insecurities with her and I could share the fact that I was gay and sort of get past that barrier of having this secret so that I could use that energy to actually compete full on a 100 percent on that outside goal. So I got really lucky that I had somebody in my life that created that space for me. Not everybody has that and so at this point people are from countries where it's still illegal to be LGBTQ. You can even be executed in seven of the countries of the world. So to be walking around in an Olympics to see Canada Olympic House but also with rainbow flag colors is a very big important symbol to many athletes.

DC: You eventually made the decision to go public. What went into that decision?

MARK TEWKSBURY: For me it was just time. It was very difficult. I had won the Olympics and I just got tired of the dance of sort of pretending to be a straight guy and getting these endorsements but having the secret and that double life slowly killed me. So I just really at one point couldn't take it anymore. It was in 1988, just decided I needed to publicly, speak about this very private issue which I don't think anybody really loves doing it first. But I realised that you know if I don't speak about this then it never becomes visible.

DC: You mention the challenges in making the Olympics more inclusive. There are seven countries you can still be executed for being gay. So what challenges have you faced in trying to make the Olympic movement more inclusive?

MARK TEWKSBURY: Well the reality is you know the International Olympic Committee looks not that different from the United Nations and so the same blocks of country that might to the United Nations be against the LGBTQ community could be very similar in the international Olympic world. So its a constant, being the right role model I think in a country like Canada where you know we have a government that really promotes inclusion and diversity. It's the right time for us, as Olympic Games, I believe to align with that kind of thinking and make sure the Canada Olympic House is inclusive to everybody. So big statement for Canada but also because Canada Olympic House is open to the world this time, we are I think sending a really great statement as leaders in the world.

DC: This is a very big story in the Sochi Olympics with Russia's anti-gay laws. Did that play a role? What role did that play in shifting attitudes towards gay athletes at these Olympics?

MARK TEWKSBURY: Well that's a really good point David. It was definitely post Sochi that the international committee and the Canadian Olympic Committee both change their charters to make sure that the LGBTQ community was not able to be discriminated against because of sexual orientation. But that happened because of the lightning rod at the Sochi games. And quite encouraging you know the very next winter Olympic Games s Canada has not only changed its charter, it's really stepped up in a physical space with Canada Olympic House to say here we are.

DC: So we've created the space with Canada House doubling as Pride house. But the athletes still need to I guess avail of the space and make the decision of what they're going to say public. So when you hear athletes like Adam Rippon or Eric Radford of Canada feeling free to be public about their sexual orientation what goes through your mind?

MARK TEWKSBURY: Well I feel a little proud actually. I feel a little bit like wow those early days of coming out which were very difficult and you know Martina Navratilova did it before I did. Greg Louganis was outed before I came out. I came out on my own free will, just sort of slightly after those amazing icons. But it makes you realize okay every little step leads to bigger progress and eventually there's a tipping point. And suddenly it's not just that there's the physical space I think that it represents that 'hey the Olympics are supposed to be about inclusion and we're really putting our money where your mouth is and in creating a free space for all'. That's a huge huge step forward.

DC: A huge step forward but the numbers are still pretty smart right. Like only 13 athletes who are public about being in LGBTQ competing in these Olympics. Why do you think the number of people who are out is still so small?

MARK TEWKSBURY: What's a very personal decision, first of all, and the other thing is it's a very private matter. So not everybody even with the opportunity wants to speak openly about their private life and that is not just for the LGBTQ community that's for heterosexual people too. Lots of people are just completely focused on what they're doing. What it does to me is though for a lot of people that might not want to speak publicly yet, it's extremely empowering to know that 'wow even though I am not talking about it there is a space here for people like me. I'm acknowledged'. You know I mean there's a spirit there that transcends the physical space that I think is really important.

DC: There are still issues in a place like South Korea. It doesn't allow gay marriage. Gay men and women are allowed to adopt. They're not allowed to serve in the military. Do you have any concerns of the Olympics being held in a country that still has laws like this?

MARK TEWKSBURY: Not nearly as much as I did of the Olympics coming to a place like Sochi. [Laughter] Well I think you know the fact that there is a Canada Olympic House able to be in South Korea that's the victory.

DC: Right. Do you think feel the Olympics can have any impact there may be changing the conversation about LGBT rights in South Korea?

MARK TEWKSBURY: Well I hope they're doing shows in Korea just like we're doing here in Canada because obviously the more we talk about it the more awareness that happens, things start to change.

DC: Final thoughts, Mark, what still needs to be done to make the Olympics more welcoming for gay athletes?

MARK TEWKSBURY: Well I think what Canada is trying to lead slowly really if it's really the Olympics one day should be an international Olympic committee pride house. It should be a statement from leaders of the Olympic movement that no one should feel excluded within this global movement. So great that Canada is taking the lead right now but I have a feeling sadly you know international leadership has been letting down in terms of clean sport and I think we're ways away from international readers also truly creating a space where everybody feels welcome.

DC: Okay Mark thanks so much. Thanks for getting up so early to talk to us.

MARK TEWKSBURY: Thanks a lot David.

DC: That's Mark Tewksbury. He's another gold medallist and a former Chef de Mission for Team Canada. We reached him in Calgary. Well the Olympics may be becoming more tolerant towards gay athletes but in some of the countries hosting the games change has been slower to come. As we discussed in South Korea homosexuality still faces strident opposition. John Cho is an assistant professor of global studies at Sarah Lawrence College in New York. He did as field research on gay men in South Korea. We've reached John Cho in Bronxville, New York. John Cho welcome to the show.

JOHN CHO: Thank you. Glad to be here.

DC: How surprised are you that South Korea has not organized a pride house for these Olympic Games? j

JOHN CHO: I am not really that surprised. I guess would look at the issue a little bit differently from Mark. Part of it is due to the political environment and the cultural environment for queers that make it difficult for them to be out. But I think another important reason is simply the lack of funding of local organisations such as KSCRC that was in charge of setting up a Pride house.

DC: So there is no political and cultural support and also no financial support for these movements, is that what you're saying?

JOHN CHO: Exactly. So I think it is important to highlight that there is a lot of activism within South Korea itself. Ah so it is not due to any lack of awareness or [unintelligible] but rather because of financial constraints.

DC: Okay. So walk us through some of the issues. What is life like for gay men and women living in South Korea?

JOHN CHO: Sure. I think there are several particularities of being gay are insult. One is that there are no laws against forced sexuality. Yet you don't see ah many people who are out. In fact you may see one or two celebrities who are currently out in the country and I think that's mainly due to the culture of Confucianism which has very strong roots in family based culture. Ah so what that means is that especially because of the Internet, especially the younger generation, they very easy access to are all discussions about being gay and can readily identify as being gay. But at the same time they very strong pressure from their ways to remain in the closet.

DC: So the pressure to conform is immense right. So you said that homosexuality is not illegal but gay marriage is illegal in South Korea. What are some of the other laws that discriminate against LGBT men and women? j

JOHN CHO: So I think - just a correction - I think that gay marriage is illegal. It is neither legal nor illegal. So that's one of the paradoxes of homosexuality in South Korea.

DC: So the law is silent on it.

JOHN CHO: Exactly right exactly. So I think that's similar with the military law. So even there are no laws against homosexuality within the military, sex between people of the same sex or gender is considered illegal.

DC: So they haven't allowed homosexuality but homosexual acts are essentially illegal in a lot of places.

JOHN CHO: Yes within the military especially.

DC: You mention Confucianism and the role that that plays in traditional family structure putting pressure on people to conform. But two thirds of South Koreans also identify as Christian. So what impact does that play in the country's feelings about homosexuality?

JOHN CHO: So the role of Christianity has been very unique. So because of the widespread family values most Koreans are not out and they do not consider discussion of homosexuality within the public sphere to be an appropriate target. Christians on the other hand, especially the Christian right, what they have done very recently since 2007 is are to politicize the issue of homosexuality as countries like Uganda or other countries have done in order to [unintelligible] their own power. So are the Christian Right I think in South Korea right now are facing declining church membership. So they're using homosexuality as a political tool to bolster its power.

DC: Is it working?

JOHN CHO: It has once again had paradoxical effects. What I mean by that is that since the early 2000s because of the Internet which has made it very easy for the vast majority of the LGBT population to be gay without having to be out, the gay and lesbian movement and certainly in South Korea's since the mid-1990s have disappeared. And so it was not in fact until the rise of the Christian Right with respect to the Human Rights Bill in 2007 that the gay and lesbian movement in South Korea also became arm galvanized. So a movement that had of it died in 2007 last year became this very vibrant movement that had 70,000 people showed up for its pride parade.

DC: So the Internet has helped. There’s been a galvanizing of political movements but how are young people in the LGBT community in South Korea, what did they do to deal with the family pressure and the social pressure to get married and have children that you were talking about earlier?

JOHN CHO: Ah right. So once again yeah I guess as an academic I was looking at more of the complexities. So the Internet has had very contradictory fact. On one hand it has enabled old South Korean LGBT population to gain access that had been previously censored by the Korean state and you know. It enables them to both confirm their identity and also to find social support. But at the same time especially after the Asian financial crisis in 1997 when the Korean state became are much more pro-family and the economic environment made it very difficult for anyone to move apart from their families, what many queers in South Korea did is they retreated back onto the Internet. And so not only in cell Korea but throughout Asia where the Internet has played the largest role in promoting LGBT discourses is that you see there's a very strong divide between the online and the offline. So you have many cyber communities in South Korea including many recreational clubs such as [unintelligible] or swimming, that are Internet based. But you see very little public visibility of LGBT communities offline.

DC: So in terms of the attitudes of South Koreans liberalizing in this issue, could the Olympics have any effect on that?

DC: listening to Mark, I agree with some things that he had stated. I also had questions I wasn't sure what exactly would be the connection between hosting are international like the Olympics in South Korea and LGBT rights. On one hand, through shows like this it does bring visibility to the situation of the LGBT population in South Korea. But on the other hand I don't know what the direct connection is. I mean there isn't really a lot of activism in South Korea.

DC: We’re just running out of time. Professor Cho, we're going to have to leave it there. So thank you so much for your time. John Cho is an assistant professor of global studies at Sarah Lawrence College in New York. We reached him in Bronxville. The CBC News is next. Then we've never had so much information about our cells and our genes. But just how useful is their DNA testing and how well are we equipped to deal with it. That discussion right after the news. I'm David Crochane and you're listening to the Friday edition of The Current.

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Health and the genome puzzle: Mapping DNA has gotten cheaper, but do we know how to use the data?

Guests: Stephen Scherer, Michael Szego

DC: Hello I'm David Cochrane and you're listening to the Friday edition of The Current.

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DC: Still to come some say society today is sending mixed messages about people with Down's Syndrome. On the one hand we increasingly celebrate and cherish people with the condition. Just look at the new Gerber baby; a smiling Down's syndrome cherub. But on the other hand prenatal screening for Down's syndrome is the norm. It's a discussion we'll be taking up in about half an hour. But first a different kind of genetic testing with a different set of questions.

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Knowledge is power and things like 23 and me put that power in your hands and it gives me a great sense of confidence going forward to keep me my healthiest and my happiest.

DC: Just a decade or so ago the idea that everyday people could have their genetics analyzed with their mail order DNA kit would have seemed like science fiction. But today that ad represents just one of several companies offering the service to Canadians. It's a testament to how far the field of genetics has come and how much hope it seems to offer people wanting to make sense of their medical histories and their medical futures. But a major Canadian contribution to the growing field of genetics is raising some important questions about just how accurate are the results and whether we have the right tools to interpret them. Stephen Scherer is the study lead for the Personal Genome Project Canada. He's a scientist with Toronto's Hospital for Sick Children and the University of Toronto and he's on the line from Toronto. Michael Szego is a bioethicist at St. Michael's Hospital and the University of Toronto. He's the ethics lead on the project and he's a study participant as well. He's in our Toronto studio. Hello to you both.

STEPHEN SCHERER: Hello.

MICHAEL SZEGO: Morning.

DC: Steve. Sure I'd like to start with you. Give me a sense of the scope of your study and really what makes this research so significant.

STEPHEN SCHERER: Well this is a decade long study that we just published last week on the Canadian Medical Association Journal. Your leading comments talked about genetic testing on a gene by gene basis or using kind of markers that highlight different regions in the genome. This is the first large Canadian study that we decoded this three billion chemical letters in all of your genes. That's all your genome. So we looked at all 25,000 genes in everything else in all of the DNA that you have and all the cells in your body and we did it in 56 individual volunteers across Canada. So this is a technology we call whole genome sequencing. And we spend about a half a year analyzing that data to try to make sense of it. What it might mean in a medical situation? What these specific genetic variants, or in some cases mutations we call, them how they may play out in your health? I think it's really important to point out though that we had to do this because the technology is becoming so ubiquitous. If you think back to the Human Genome Project in around 2001 it cost three billion dollars to sequence a genome. It is a consensus from many individuals across the population. And in 2007 when the genome of the first identified individual was delivered it was about 17 million dollars. Okay. That's when we started this project and it started to drop 5000 and when we actually really threw everything into this about 18 months ago, it's around a thousand dollars per genome. We just got a machine in our lab at the end of January that's going to push it into the 100 dollars you know a few hundred dollars range. So this technology is very powerful. It will be in the clinics. So it's kind of like the you know the current head of the horse. We have to learn how to use this data and we needed to get the job done. So it was really a kind of test where any type of leak in the system might be. We have to understand you know what's the best way to collect the DNA? What's the best way to sequence it? What's the best way to interpret it? And that was really the design of it. It's to learn.

DC: So Michael whenever go poking around people's genes there are ethical issues that come up, what are the big ones that head into this sort of research?

MICHAEL SZEGO: One really unique feature of this project, I mean most research projects, there is some promise of privacy, maintaining your data, only certain people have access. And in this case we sort of turned that on its head and we are very clear that people that are coming into the project at least their intention at the time would be make the data public. So we were informed consent is a huge part of any project but particularly important for this one because people once they make their data are public basically don't have any privacy rights anymore.

DC: Okay so you didn't just seek people's consent. You also gave your consent because you ended up agreeing to be a participant in this as well as [unintelligible]. What was it like deciding to participate in your own project?

MICHAEL SZEGO: Well I wrote the consent form and it was a little bit strange signing my own consent form and I didn't take that decision lightly. So I actually went through the process that we ask all research subjects to do, which is you talk to your family members about what their opinions are about it because you know you share your genes with your family members. Then they decided to participate obviously and it took a while to sort of think about.

DC: So Michael you learn some things when you got your results. What was that like?

MICHAEL SZEGO: So I still remember I got my genome report it was I believe end of February. Open it up on my computer sort of in the evening and the first thing that jumped out was a variant associated with hypogonadism. So hope means less than and you don't really want to see less than and gonadism in sort of in the same square. So I dug into that a little further. And so people that truly do have hypo gonadism wouldn't have gone through puberty and would be sterile. And I've got three healthy kids and puberty happened at around the rate time. So clearly I don't have the trait. And it turns out that's one of the variants that will be called the VUS. It's a variant of unknown significance. So it's associated with a gene that has been reported in the literature that can be associated with hypogonadism but there has been no sort of reported case of the variant that I have actually being associated with hypogonadism.

DC: So Steve I guess this goes back to what you were just talking about in terms of how do we interpret this data. How do we collect all this data? So how do you explain a result like this that shows up as a genetic marker but doesn't manifest itself in a guy like Michael?

STEPHEN SCHERER: Yes well each of us carries us roughly four million different genetic variation in our genome compared to this reference sequence I talked about generated by the Human Genome Project. What we did is we sold to those to look for a specific genetic variants that may lead to a damaging effect of a gene. Okay so change from having the typical two copies to one copy or three copies instead of two , etc. So we actually found in every single individual at least one or more change that we think would impact their medical care. We found in 25 percent of the individuals a genetic change that would be predicted to lead to a known genetic disease or disorder. But in not every case did that person have that disorder yet or did they have a family history of that, in some cases they did. This is really what was kind of highlighted in the discussion of the paper and there is lots of media around this afterwards is that when we do the comparison of the genetic alphabet that we determined from the volunteers we compare against disease databases that collect mutations from people who have the disease. Okay the gene is a string of genetic letters. And if you find a specific change and you compare it to a database like the cystic fibrosis database that collects patients with cystic fibrosis you're going back to see that genetic change in cystic fibrosis. The whole goal of this project was to figure out what these genetic changes may look like in the general population that don't have that specific disease you may be actually training for. That's exactly what we found; these genetic changes can lead to a lot of differences, subtleties, less expression of a particular genetic characteristic for example. In some cases leading to something entirely new, in some cases it didn't affect them at all. It may be that it's going to affect them later in life perhaps their children will express this in a different way but it's just quite this issue as Michael pointed out, these variants of unknown significance. We just need a lot more data to compare against and I think we'll be able to figure out - never all of them but some of them. If I can I'll just give you an example. When I think back to Global Positioning units GPS systems back 10-15 years ago, when you had these in your car in the early days you know often it sent you to the wrong place. In fact mine has always sent me to the wrong place. And the reason was that database they were using to compare against it didn't have the full Google Maps; it didn't have the detail information to compare against. So when we do a genome sequence we call genetic variants we find specific mutation and we are comparing to a genetic GPS system that's just barely populated right now. It's going to tell us sometimes the right answer sometimes the wrong answer and in most cases there's no answer. We think as we get into the millions of genomes and this will happen to compare against, our genetic GPS system is going to get a lot better. I think what we said in this paper is it's never going to be perfect. It's going to get better though and we think the application in medicine will be very important and we just really need to learn how to use this information.

DC: Right, some more data means better precision I guess over time. But Michael I want to cycle back to your hypognadism if I can. I get the sense have had before. So you got these results you know late in life you'd gone through puberty you'd had kids. So clearly it kind of didn't matter. But what have you been tested on red at birth and then come up with this sort of a resigning what are the ethical issues around that we're kind of been in power can that have on someone's life if this is discovered that are only so you know what is to lectures on.

MICHAEL SZEGO: I actually use myself as an example which is it's you know when you get the data as an adult you've got a [unintelligible] you've got a text. If you were to do this much earlier in life- I mean first of all I am not sure if this would have passed sort of scientific rigor needed to actually have this on a clinical result. But you're quite right in terms of we'll be testing children or even you know prenatally for this. It's a very good question because if the data is not robust. I mean I think parents have a right to have information about their kids. But the question becomes is the data robust enough to be able to give an accurate picture of what that child's life would be like. Because people will freak out right if their kid comes back with a genetic marker that is scary- I mean I've got two kids. I would have a bit of an emotional meltdown I think. Well certainly you know when you're in that period you know when you're pregnant there isn't a lot of control of things. So certainly getting information back like this could be very upsetting which is again why this isn't ready for prime time. I think anyone has suggested that this would be good screen to do to try and identify the whole you know all the possible things that could be wrong with the child. I don't think the data is robust enough to be able to be reporting back to people.

DC: Steve are there other examples of people like Michael who got results that didn't match their actual health in your test?

STEPHEN SCHERER: Yes we have a whole table of these results in a scientific paper and in many cases the result did match as we would predict and in probably an equal number of cases they didn't or they presented in more of a subtle form, where we found individuals that have had genetic variants that would predict for certain forms of cancer. In fact it did have a family history of these types of cancers or related cancers in their own life and also in their relatives and all kinds of other very big changes, chromosomes, deletions of DNA. You know everybody has their own genetic story. We tried to tell part of that story in the paper here. I just want to make one other point. It comes back to the GPS analogy. When you get the genome sequence that's static data, it is really good data, it probably would get better if we did it five years now but in my opinion it's likely to be a lot better. So this data will become part of your health record and every time you go back and look at it, you will know more because you are going to have more to compare against. It's going to get better and better I think as Michael pointed out it's probably not ready for prime time in the adult populations. We do use this technology in research settings across Canada and around the world. There's massive projects. There's one in United States sequencing a million people, there is one in the United Kingdom doing 100,000, Israel a 100,000. The list goes on and on and on but for a typical individual they come and ask me you know, they are healthy 'should I have my genome sequence done?' My recommendation is yes but do it as part of the personal genome project because you need to have all of this support around you at least now I think maybe 10 years out there may answer will change.

DC: Okay I want to play a comment from Timothy Caulfield who's the Canada Research sharing Health Law and Policy at the University of Alberta and his research includes looking at the legal, the ethical and social issues around genomic technologies. He says this research is exciting but he also has some caveats too. Take a listen to this.

SOUNDCLIP

He has done all this research and what's often promised with the genetic revolution is that we are going to be able to help you live healthier life and live longer. Right. And we're going to be able to tell you what your predispositions are and what kind of diseases that you might might get. But you know what, for most people unless you have a rare disease or one of the few highly penetrate cancer genes for example, we know what you have to do. You don't smoke, you exercise, you eat real food, you try to watch your weight, you get a good night's sleep, you surround yourself with people that you love. There's really no magic and genomic information is not going to radically change that.

DC: Stephen Scherer what do you think about it? That list of advice is pretty good. I get it all the time from my doctor I tend to ignore a lot. Is that more valuable than what we've learned from genetics?

STEPHEN SCHERER: He is not wrong. Tim and I know each other we would take different points out of this. It can save your life. There's no question there's data around this. It can explain all explainable conditions in family history. It's a matter of when the percentages add up enough to make it economically viable. Our argument is that once the sequencing price drops into the 100 hour range it isn't going to matter. It's going to happen because you know the systems will demand to have this because it's just a much more economically efficient way to capture genetic information instead of doing six, seven, eight, nine different tests that cost 10 times as much. I think as a genetics community we need to do better and make a list of examples where we have saved lives or we've modified lifestyles. There are other articles coming around this in the next week or so that we'll talk about the impact of pharmacogenetics. So if you have specific genetic variant, how you may respond to particular drugs, how people are using this to explain and diagnose diseases. It's not just in rare diseases but Tim is right. For most healthy individuals, it's not going to change your life. It's additional information should you use, you know you'd have to be pretty educated too. But I think again the point is that many of us believe we didn't have a decision in cellphone's, we didn't have a decision in self driving cars. I don't think we’re going to have a decision around genome sequencing it’s going to be so cheap it’s just going to happen. So we need to figure out how to make use of that data in the best way. So I don't think were arguing the point it’s just that we come about in a different viewpoint.

MICHAEL SZEGO: We made no claim in our project that individuals will get back data that could revolutionize their life. This was really about altruism as it was about- I mean I think people that joined the project had an interest in doing this, had an interest in finding out something about themselves. But their primary reason for doing it and I know this because I consented all of them was to be able to kind of give back to the scientific community and actually you know again help scientists doing research in this area.

STEPHEN SCHERER: One thing this experiment we did, this whole genome sequencing captures essentially everything, which gives you an advantage point. I would love to be able to do whole genome sequencing and [unintelligible] genome and do a report like this and see if it still has the same opinion. We described changes in chromosomes we couldn't believe were in the healthy population. Big chunks of the chromosomes and DNA missing, a lot more genetic variants that anyone have seen before. And in some cases that provided explanations in other cases that add up a whole new level of complexity. And I think really that's the whole issue of genomics right now. Andrew Packard pointed out in an editorial that it’s messy and unpredictable but in fact it’s just kind of the next step to get to where you know genetics is going to play out in healthcare.

DC: But if people actually change their behavior based on a genetic result, if they come back and say 'You are genetically predisposed to this' do people actually make changes to their health based on their genetic information?

STEPHEN SCHERER: Well it depends on the study. There are studies that show yes and it depends on the disease where you've detected a risk factor before, and there's other studies that get large populations that say no Tim has been involved in certainly something allowed or probably some of the former examples. But in my experience we saw this, Michael can comment on the gender counselling sessions. Everybody learned something that actually helped them even if it was just to try to understand some of their existing health situations and these work extensively healthy individuals in this study. We've been involved in many other studies. My group works on the genetics of autism and in every case and we've delivered information back to the families. We only do that when we think it’s going to help them but they value that information in our experience if it goes back to a genetic counsellor it can have a positive impact in helping them make the right decisions.

DC: But Michael you know these commercial tests are exploding in popularity. You see the ads all the time. Everybody wants to know what their heritage is and if they’re somehow connected to the king or queen of England. Are there concerns with this? Is this something everyone should be doing? Is there an ethical concern about this explosion in genetic testing?

MICHAEL SZEGO: Well in certain tests 23 and me kind of example one of the concerns I have is around what people actually signing up for. So they're getting back some information, in some cases they have access to credit counselling in a lot of cases they don't. And again I think that's one unique feature of our project which I think is really important. You really need somebody to be able to contextualize the data that's being given back to you. The other is what else will their data be used for and in a lot of these platforms they're actually using the data for other research and I'm not sure people that are signing up for these kind of projects really understand all the secondary uses of the data will be used for it.

DC: They can be sold or given to a third party.

MICHAEL SZEGO: Right.

DC: So Stephen you talked about the price of this coming down to about 100 bucks. I mean that's so cheap. It’s going to be completely ubiquitous so is this sort of testing is going to be eventually be a routine medical procedure?

STEPHEN SCHERER: Yes we think so. Absolutely. Certainly the hospital setting in Canada that's where genetic plays out. It is paid for by the Ministry of Health. There are hundreds of thousands of tests, genetic tests, per year - there actually in millions to be honest. I don't have the exact number but there are typically done one gene at a time a small pile of genes and they can cost thousands of dollars. Its not unusual for an individual medical query to go through five or six different types of tests. Many of them being genetics are costing thousands and thousands of dollars. So the argument here is why not just do the whole genome sequence as a single task upfront and this is what we did in the paper and again get all of the genetic data in one fell swoop. Even if you have a query for example it may be cheaper to do that than just testing for the breast cancer one gene for example or the breast cancer gene is actually probably cheaper even now just to do a whole genome sequence. The challenge is you do not just get information on the breast cancer gene. You get everything out. What happens now for say cardiovascular disease they screen for I think its roughly a dozen or so different genes? You actually sequence all the genes in genome but you mask away everything that's not known to be involved in cardiovascular disease. Okay so you may find that someone is also carrying a risk factor for Alzheimer's disease or for Parkinson's disease, if you look at all of the rest of the data. We look at all the data here this was the full monte of genetics. We want to see everything that you might find 2017-2018. We look at it again in a year from now we're going to find more and more and more. So it's going to be what's the inflection point? Why is it better to not get all the data that you can gather in one experiment and use it not just a descriptive way, or confirmatory but also a predictive way to make estimations of what may play out in your own health and then how you might modify that. So there is a whole industry growing up around this. Much of it is still in research but as you pointed out there's lots of commercial testing companies happening in the States. We are in a genetic era now.

DC: So Michael I guess that's the final question if you look at the complexity of this information- I mean this has come in. This has come in fast, this sort of genetic testing revolution I guess in a way. What's your advice for the average person listening right now about the best way for them to get more information about their health?

MICHAEL SZEGO: I mean I still think it's all the common sense kind of things. Listen to your doctor, getting information from the usual sources is still not the way to go. I think we will get to a point like Steve mentioned where you know whole genome sequencing will become kind of standard for everybody but not everyone will get the entire research report like we've got and we go back to our participants here. Right. So I think the way this will probably proceed is that because of cost people will get their whole genome down, and then every time you go to your health care provider if there is a discrete question that they can ask of you know they may help in prescribing a drug in determining your likelihood of developing cancer. Then they'll do all sorts of tests but they'll be sort of those discreet tests but down over your lifetime vs. only when you when you present certain clinical symptoms. So I still think it's you know go listen to your healthcare provider because they are the experts.

DC: Okay. Steve Scherer and Michael Szego thank you so much.

STEPHEN SCHERER: Thank you.

MICHAEL SZEGO: Thank you so much.

DC: Steve Scherer is the study lead for the personal genome project Canadian. He's a scientist with Toronto's Hospital for Sick Children and with the University of Toronto. Michael Szego is the ethics lead and the project a study participant as well. He's a bioethicist at St. Michael's Hospital and the University of Toronto. Coming up in our next half hour a popular baby food company opens a can of conversation with its choice of a super cute toddler with Down's syndrome as the face of its new campaign. That's coming up in about 90 seconds. I'm David Cochrane and you're listening to the Friday edition of The Current.

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As terminations rise, will Gerber's Down syndrome 'spokesbaby' change attitudes?

Guests: Karyn MacMahon Bradfield, David Perry, Vardit Ravitsky

DC: I am David Cochrane and this is the Friday edition of The Current.

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JASON: We just walked in to the house, she opened the mail and she started screaming. And I am like 'What's going on?' And she's like 'He won.. He actually won.

COURTNEY: Shock. A real disbelief like is this real. Am I dreaming? h.

JASON: Then it really set in 'Oh my goodness my child's going to be the next Gerber baby.'

DC: That was Courtney and Jason Warren parents from Dalton, Georgia telling NBC's Today Show what it was like to find out their son been picked as this year's Gerber baby. Every year the baby food company chooses a spokes baby from hundreds of thousands of submissions. But this year pick, Lucas, is a first. He has Down's Syndrome. Lucas parents say they hope having their son smiling face in the public eye will help promote acceptance and support for kids with special needs. But the campaign comes at a time when, as we were just discussing it earlier in the show, when genetic testing is becoming more sophisticated and some parents feel they are caught between conflicting messages and pressures about the place in society for their children with Down's. Karyn MacMahon Bradfield, a mom of three girls and a writer. Her middle child McCall has Down's syndrome and Karyn is joining me from her home in Toronto. Karyn welcome to The Current.

KARYN MACMAHON BRADFIELD: Good morning David.

DC: Well when I saw Lucas's big smiling face I got a big smile on my face. What do you think of this campaign?

KARYN MACMAHON BRADFIELD: Well first of all Lucas is super cute.

DC: Isn't he? [Chuckles]

KARYN MACMAHON BRADFIELD: Yes he's super cute. I think that you know what's really important for the community I think is that it's like the mom, like Lucas's mom said, it's about acceptance and about recognition and about supporting people with special needs. I think that it's amazing that Gerber has done this. I think that it brings attention to children with disabilities. And at the end of the day you know people- we are all just individuals. And I think that it's important for people with special needs to be recognised as such beyond their disabilities. And I think that when they have that support from the community they're able to showcase their abilities and grow and succeed in life.

DC: So kind of a signal do you think it sends to the broader society?

KARYN MACMAHON BRADFIELD: I think I think just that. I mean I think that it's important that everybody, you know all of us, want to be part of our community we want to be recognised as individuals with our own strengths and our own abilities and I think that what often happens with kids with disabilities and with special needs is that sometimes the fear of the unknown or the you know not knowing what their abilities are, not knowing how to manage them, not knowing where they're going to end up we sometimes as a society stifle them. And they think that the opportunity is given to them, I've seen it with my own daughter, they really can strive.

DC: Tell me about Nicole. What kind of kid is she?

KARYN MACMAHON BRADFIELD: Nicole is 11. She is the middle of three girls. She's a great kid. She's determined and headstrong. She's super smart and manipulative just like most 11 year olds. She has a very typical relationship with her sister is where she blames them for a lot of stuff that they insist is not their fault. She has all of those things but she struggles you know. It takes longer for her to learn things.It is physically hard for her to do some things. She gets frustrated because she is very hard to understand, it is hard for her to articulate. She has some speech issues and so her behaviour is a bit difficult to manage sometimes when she's frustrated. But you know sometimes my other children are very hard to manage as well and they don't have any any any disabilities like Nicole. So she's great, she's determined and she moves forward at her own pace and she certainly thinks for herself. So she's a pretty great kid.

DC: I have a 4 year old and a one year old so I empathise with you [chuckles] but how did you find out Nicole had Down's syndrome?

KARYN MACMAHON BRADFIELD: I was 35 when she was born so I didn't do any testing. We, her dad and I, it was a choice that we made not to do the testing because we thought for our own family and our own decisions that we wouldn't do anything with the information. So we decided to not go through that and risk the [unintelligible] on all of those things. But of course I have to admit frankly you know when you're 35 you think 'oh well the odds are pretty stacked, it's not going to happen to us' and so you know you don't really expect it. So I think that at that time it was like one in 450 or one in 650 or something like that. But you know we found out after she was born. Some of the doctors staff some sort of similar or typical marker that perhaps that she might have Down's syndrome. So we tested and found out for sure at about five days later. But we were very lucky you know lots of kids were down and sometimes are born with some serious heart issues and those types of things and she didn't have any of those issues. So she was quite healthy and quite big [chuckles] and she was able to come home and all of those things right away. So we found out after it was very difficult because of your postpartum. I also had a 22 month old at home and it was an emotional time but we now look at it and we say 'we won that lottery. We won the one in 450 lottery'.

DC: How did your family and friends react to this? You said it was a very emotional time for you. How did your family respond?

KARYN MACMAHON BRADFIELD: You know people- It's interesting so many people, what I have learned and discovered is the people who have and know people who have people with Down syndrome in their lives and know people with Down Syndrome, they are 100 percent of the time their reaction is a positive one. So right from the very start when I said you know Nicole has Down syndrome, anybody that I knew who remotely knew anybody who had ever met anybody with Down Syndrome said: 'Amazing way to go. That's great.' As far as family goes I think that that reaction was much more emotional obviously because they're closer; worried about me, worried about our lives and the change that that meant. So some of their reactions were more emotional like oh boy this was going to be hard and all those things just like you do as loved ones for people, but they love her now. That's for sure.

DC: There's no delicate way to ask this so I'm just going to go ahead and do it. You said you didn't get tested. Do you regret not being tested? Because you did get testing for your next kid, correct?

KARYN MACMAHON BRADFIELD: I did. So I don't regret. I think I believe in you know obviously is right to choose what they want to do. That is a very hard question to answer. I'd say there's a part of me that probably regrets it because I think that knowledge is power, and I think that perhaps if I had tested at whatever time it is that you'd test - four months or whatever - I may have had... I would have had more time to prepare myself and manage sort of the emotion that goes along with that. I think that finding out when she was born was quite a shock especially since you kind of in the back you might never think it's going to happen to you. And so I don't regret because I would have changed anything. I still would have had her and all of those things. But I think that the knowledge part would have been for me personally probably an easier path to follow than the shock that happened when she was born, for sure.

DC: So it wouldn't have changed any decisions for you but you would have been more prepared for what lay ahead.

KARYN MACMAHON BRADFIELD: Correct correct.

DC: Karyn thanks so much for joining us.

KARYN MACMAHON BRADFIELD: Thank you. Thanks David

DC: Karyn MacMahon Bradfield. She's a mother of three in Toronto. David Perry has been listening in to our conversation. He's a columnist covering disability rights and other topics for Pacific Standard magazine. He's also the father of 11 year old Nico who has Down's syndrome. David Perry is with us from Minneapolis, Minnesota. David good morning.

DAVID PERRY: Good morning. Thank you for having me on.

DC: What was your reaction when you heard about the new Gerber baby?

DAVID PERRY: You know I want to echo everything that Karyn said before in terms of her broader message and her experiences with her daughter are very similar to the ways I feel about my son. I have to say though that although the Gerber baby is as we said super cute I am very sceptical that it is a particularly significant moment in a long journey towards acceptance for people Down's syndrome, and inclusion for people with Down's syndrome where people are disabilities more generally.

DC: Why are you so sceptical?

DAVID PERRY: Well I feel like we've seen this before and that while Lucas is cute, Lucas and my son too, they are very much conventionally cute. They are cute white children who are kind of typically cute and that most people look at them and they say 'Aw that's so cute'. But then what is the next step if this is a first step towards greater inclusion? What is the second step look like? If someone is walking through a grocery store and sees this picture and stops and has a little emotional moment. What do they do next? How does it change? And then even if they then sometime later get a prenatal diagnosis is that moment with the baby jar in fact significant? I guess I'm just sceptical that this is particularly important and its getting this huge wave of publicity across both social media and formal media. And even even on the CBC here, you know here we are. There's a lot of bigger things going on and a lot of more important steps that could be taken, that even Gerber could be taking around these issues.

DC: Is this another piece of the puzzle though in helping destigmatize things like Down syndrome? Does it not help there?

DAVID PERRY: It doesn't it does. I don't want to say that it hurts. But you know in 2012 Target and Nordstrom's had their first advertising featuring a really cute white toddler with Down's syndrome. It was a big deal and everyone celebrated it and I don't think again that it has made significant changes in any particular kind of way. I think that advertising is important. It is a form of representation and all representation matters. But I guess I'd like us to move beyond cute white toddlers with Down's syndrome as somehow revolutionary.

DC: Let's talk a little bit about Nico. Your son he's 11 years old. How did you find out about Nico having Down's syndrome?

DAVID PERRY: Well like your previous guest we found out at birth and it was a surprise, and it was a difficult one for a few hours, there. A couple of things happened that helped. One is our friends kept saying congratulations, no matter how distraught and confused we felt. We started to get actual information and I am very pro information and I think that really delivered well you know accurate information can really help and that of course I had my son to hold my arms and that made all the difference.

DC: So you didn't do prenatal testing either right, like Karyn, you didn't?

DAVID PERRY: We did not. And I think that's important because what happens is there are these really quite scary numbers and they are legitimately scary. I've written a lot about this, about the numbers of people who choose to terminate after a positive prenatal diagnosis of Down's syndrome and in some countries they're up in the 90s and other countries in the 70s but very high. But what you don't hear here so much is the numbers of people who choose not to test, who do so consciously and intentionally. So the people who choose to test then choose - a high percentage of them - choose to have an abortion after a positive diagnosis but lots and lots of people, the majority I think still choose not to test. What I am worried about is that these tests are getting earlier. They're getting more reliable and they're getting cheaper. And so I do think we have to change the way that we talk about and think about not just Down syndrome but human value more generally in a very broad way.

DC: What’s the downside you think of the cheaper early or more prevalent testing. I know there are countries like Iceland where Down's syndrome has essentially been eliminated because of this. So how do you feel about the prevalence of that testing?

DC: Well I think that as a as a species, as cultures were not really ready for that kind of information so early. There's risk to the amniocentesis and the current testing, the accurate testing takes place much later into pregnancy. So by the time we've reached the second trimester the pregnant individual is quite a long way through the pregnancy. They've decided not to terminate the pregnancy in the early months. That's a very small sample of people. If you could get a really accurate test in the first month or month and a half I think that would be a lot of information for people who would then hear the word Down's syndrome. And then again what would happen next? Would they get really good information? Would they get information about school and support and jobs and lifelong inclusion or would they say 'Down's syndrome here's a picture of a cute Gerber baby. Your baby will look like this' well for me I want to hear about the jobs and the schools and the long term support and the housing and all of the efforts that we as a society can make to build a more inclusive society and celebrate the agency of people with Down's syndrome.

DC: But there is that issue you raise about the high rates of pregnancy termination after people get this test and they discover this marker. I mean how do we reconcile those actions with the message received from the advertisers, like the new Gerber advertising campaign and the push for more inclusion and diversity in society?

DAVID PERRY: Well I think people are scared when they hear these words. They're often delivered in ways that - The news is often delivered in ways that don't really reflect the whole realities of life. You know when you're a pregnant individual and you hear the words Down's syndrome, how do you get from that moment of fear to hear Karyn's story or hear my story or meet my children? How do we do that? That's a really big big effort. And I guess what I'd like to see from Gerber is more than just this cute child. I would like to hear them say 'and we are going to be employing thousands of people with Down's syndrome and paying them for wages. We are going to diversify our workforce' or 'we're going to support children with complex medical food needs in infancy and we're going to really work on that and make sure that even the most vulnerable families have access to all of the nutritional support that they need'. These are the kinds of things I mean when I say I want us to go from this first step. We've seen this before, cute picture of a cute kid. Great. It made me smile too. But what is the next step and what does Gerber doing about it

DC: Before I let you go, Nico is 11. How is he doing?

DAVID PERRY: He's a spectacular kid. One of his most powerful- He loves to be seen. He wants you to see him. He loves it. Every morning he pulls up an iPad and he flips through and he finds his songs and he starts to play them. He's incredibly well liked in his school. At his former school they called him the Mayor because he would go out and shake everyone's hand and say hello to each person as he went by them. And it's genuine it's not sort of an empty 'oh he's such an angel' in a kind of sweet empty way. He genuinely is interested in people. He wanted to be seen and to see and to touch and be touched and be part of the community.

DC: Dave that's great. Say hi to The Mayor for us and thanks for coming in with us today. That's David Perry. He's a columnist; he's the father to Nico, the Mayor of his school in Minneapolis, Minnesota. Well quality of life and life expectancy for people with Down's syndrome has improved in recent years. But at the same time advances in genetic screening mean it's easier now than ever for parents to find out whether the fetus they are carrying has genetic abnormalities including the markers for Down's syndrome. The upshot is a set of ethical questions both for expectant parents and physicians. Vardit Ravitsky is a professor of bioethics at the University of Montreal. She also leads a Canadian research project called Pegasus looking at the ethical social implications of prenatal testing technology. She is here with me in our Ottawa studio. Thanks for coming in.

VARDIT RAVITSKY: My pleasure.

DC: Tell me about it. What is this latest screening method that might detect Down's syndrome?

VARDIT RAVITSKY: So this is just a blood test performed from a sample from the pregnant woman. The blood contains cell free DNA that comes from the placenta and we can now based on this DNA give women very early information, particularly by Down's syndrome but about other trisomys and other conditions as well. And the number of conditions that we can test for is growing very fast and the cost of the test as your previous participant noted is coming down. So these tests are becoming much more accessible.

DC: So what kind of ethical issues is this raising effort for parents and for doctors?

VARDIT RAVITSKY: So first of all previously as noted we could have access to these results later in the pregnancy. Deciding about termination when the pregnancy is far along as a different decision than deciding early on. The ease of the test, the higher accuracy it really means that you get reliable information much earlier and as I said for a growing number of conditions. So you know somebody said previously knowledge is power. It can also be vulnerability because the prenatal context is very you know- We have to understand you give people the information about a condition you don't give them treatment. You actually tell them you have two options: Carry on this pregnancy and have a child with special needs or terminate which is always a terrible decision. So this is a very vulnerable time, under time pressure and people get a lot of information and they do not always get the full information. Studies have shown that clinicians really focus when it comes to Down's syndrome about the health complications, the issues. They are not usually well equipped to give the full picture, to tell parents about the happy parts, the quality of life, the fact that most families raising a child with Down's Syndrome are tremendously happy with their experiences. Another element of vulnerability is that from the genetic test all you can know is that your child will have Down's syndrome but you cannot tell anything about the level of function that your child will have.

DC: Right. The severity of it.

VARDIT RAVITSKY: There is a full spectrum. Some kids as described thrive, go to school, will have a job, play weather table, are completely integrated into society. Other kids won't be able to speak and will be very dependent and you cannot tell that from a genetic test.

DC: So I just want to circle back to what you were talking about the way this is presented to parents who get the test results back. And what the [unintelligible] are talking about that. You know people are present, here are the schools, here are the support. I guess it is difficult for a doctor or genetics counsellor to even really talk about those sorts of things because it's outside their field of expertise. I guess that's part of the problem. Correct? They're trained to deal with the medicine.

VARDIT RAVITSKY: Yes so the problems is on two levels. With the clinicians some of them never met a kid with Down's syndrome. If it doesn't happen to be in their lives, it's not necessarily part of your medical education. And they really don't have the tools to discuss this, to disclose the full picture with women. So part of what we do with this Pegasus project is to create informational resources for the couples, the women, the pregnant women and the clinicians to allow a fuller conversation not just about the medical condition but what is it like to live with a child. We interviewed families. We are creating videos to put them online. Actually there are some videos already out there where parents give a balanced picture not just the rosy cute baby. You know these kids live to be 50 or 60. What's going to happen later in life? What happens when the parents are too old to care for the child? Where is the child going to go when it's an adult? So these are issues that are not addressed - definitely not when you are considering prenatal testing - but also by all these you know marketing and PR efforts. So that's where we put the emphasis. The other issue is the societal level. If we don't have social policies to really put the resources there for social integration to get your kid into school, to get them into the job market, maybe into a group home later in life then as the dad said the baby is not going to go very far. Parents need to know that they really have options for their kids later on if they're going to make a free and informed choice.

DC: I mean that's the conversation that has to happen when you've got the results. I mean how concerned are you about how the testing is even being communicated to parents by doctors?

VARDIT RAVITSKY: Great question because these conversations about Down's syndrome if you're lucky will happen after you have your diagnosis. And again the numbers show people vote towards their choices. 80 to 90 percent terminate when they get a clear diagnosis of Down syndrome. I think the conversation should happen before testing. Actually a majority of people do screen but some of them we see screen because it only really understand that screening is taking place or they don't understand what they are being screened for. They only get a sense of what the testing is after there is a problematic result. These conversations must, should, happen before testing. So we must find better ways to inform women when they choose whether to start this path through their pregnancy because if you screen you're going to be under pressure to diagnose. Once you get a diagnosis you will feel pressure to do certain things with this result. Unfortunately it shouldn't be this way.

DC: You are scared too. You make emotional decisions.

VARDIT RAVITSKY: You are not well informed. You didn't get the full picture. You are under time pressure because you know the pregnancy is moving along. So as I said it’s a very vulnerable time. My main message is that testing must be a decision that is completely informed, supported and free. And when we say a free choice it means that if you choose to reject testing, you won't be criticised. You won't be judged. It will be a choice.

DC: There's a lot of pressure to get the testing.

VARDIT RAVITSKY: Absolutely. We have so much work to do as a society, as clinicians, as through social policy because we can implement mechanisms that make sure women make the decision about testing really feeling that they're supported no matter what they decide. And that even if they tested and decided to carry the pregnancy to term and have their wonderful baby with Down's syndrome or not they have the resources and the social support to have this baby and to raise their child. I just want a really quick story that links prenatal testing to the issues we're discussing, the social issues. So a nurse came to talk to me after one of the talks I gave and she said 'You won't believe what happened to me today in the ER. A toddler came in needing dialysis for a kidney disease and the first thing the doctors said to the parents was. This disease is detectable prenatally. You didn't test?' Now what is the message sent to parents?

DC: It is your fault.

VARDIT RAVITSKY: Precisely. Now the kid is already there. The kid is born, needs treatment. This is what the parents need now? Guilt? Blame? Carrying this burden of deciding not to test or deciding to have the baby? That's what we need to fight. Genetic testing during pregnancy is a great thing because it gives access to information. Women who want this information should have it if it can be free of charge even better. But the link between having the option to detect these conditions and then stigmatizing families that had children with the same conditions or reducing the resources and the support for them, this is a tendency we must fight as a society. Every woman must make hard choices, every couple, every family based on their values, their resources. Choice can even be different between two pregnancies as we heard. It is a profoundly personal choice but once the child is born we have to create a society that is not just looking for the cute babies, as your other participant said, but really support families throughout the life-cycle with the integration of all children and the full support for all children.

DC: Just quickly we have seen in headlines, I mentioned this last interview by Down's essentially disappearing in countries like Iceland because of this sort of testing and the decisions that are made. What do you make of that phenomenon?

VARDIT RAVITSKY: Honestly the Iceland titles were quite misleading. Iceland has the same rate of testing and as other countries but they are a tiny population. So the number of actual births with Down's syndrome is very small. But they didn't make any conscious effort to eradicate the population. At the same time let's face it, the numbers are speaking. People with a diagnosis of Down syndrome, the great majority, will terminate. And what does that say about this tension that you tried to target between the positive messages that we hear through the media and the actual reality on the ground.

DC: It's a fascinating conversation. Thank you so much for your time. That's Vardit Ravitsky. She's a professor of bioethics at the University of Montreal. She was with me here in our Ottawa studio. And now a word from the team that made the show this week.

Alison Masemann: Hi. I'm Alison Masemann, one of the producers here at The Current. This week the show was produced by: Idella Sturino, Howard Goldenthal, Ines Colabrese, Rosa Kim, Pacinthe Mattar, Julie Crysler, Samira Mohyeddin, Kristin Nelson, Karin Marley, John Chipman, Kori Sidaway, Yamri Taddese, and Liz Hoath. The Current's writer is Peter Mitton. Our web producer is Lisa Ayuso. Our digital producer is Padraig Moran. Transcriptions are provided by Rasha Shehata and Nikhil Sharma. Our technical producer is Gary Francis. And our documentary editor is Joan Webber. Thanks to our network producers across the country...Anne Penman, Michael O'Halloran, Susan McKenzie, Mary-Catherine McIntosh, and Suzanne Dufresne. Our senior producers are Willow Smith in Toronto and Cathy Simon in Vancouver. The executive producer of The Current is Lara O'Brien.

DC: That is our program for today. Stay tuned to Radio 1 for Q. Today guest host Jael Richardson is joined by writer Zadie Smith. And remember you can always take The Current with you to go on the CBC Radio app that lets you browse through past episodes of the show and start listening in just a few seconds right from your smartphone or tablet. It's all free on the app store or Google Play. I am David Cochrane. Thank you so much for listening to the Friday edition of The Current.

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February 9, 2018 Full Episode Transcript

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