Where should we draw the line on genetic screening?
Airdate: 
Tuesday, October 9, 2012 - 20:30
Channel: 
SBS One

Is there anything wrong with choosing your baby's health, sex, personality, even intelligence?



Every day, mothers are being screened to see if their future children could be at risk of diseases including Down syndrome, cystic fibrosis, muscular dystrophy and spina bifida.



But sex selection for non-health reasons is not allowed here so many Australians are going to IVF doctors overseas to choose to have a boy or a girl.



In the not-too-distant future, parents might even be able to choose elements of their baby’s personality and intelligence.



Insight looks at the ethics of so-called designer babies. Should humans embrace the new genetic technologies to 'breed out’ disease? Or are we, as one guest puts it, in the grip of 'gene mania"?



Producer: Meggie Palmer

Associate Producers: Saber Baluch and Sarah Allely

Transcript

JENNY BROCKIE: Hi, I’m Jenny Brockie. Let’s cross straight to Bangkok tonight, and Danielle Morris, tell us why you’re doing IVF there and not here?

DANIELLE MORRIS: Yeah, we’re over here because we’re doing the PGD and um gender selection which obviously they don’t offer us back at home.

JENNY BROCKIE: So what is it that you want, a boy or a girl?

DANIELLE MORRIS: A boy.

JENNY BROCKIE: Any why do you want a boy, Corey?

COREY LEIGHTON: We have six lovely girls. Um Danielle has one boy from a previous relationship, um so we’re a split family.

JENNY BROCKIE: And how does the sex selection process work? What’s involved? What do you have to go through?

DANIELLE MORRIS: Um it’s basically the same as IVF, but instead of them taking the eggs out and putting them straight back in after they’re fertilised, they grow them for five to six days, and then they do the tests on them, the PGD testing. And then they do the gender um testing, and then they put them back in and we find out which are girls and which are boys.

JENNY BROCKIE: How much does it cost to do it?

DANIELLE MORRIS: If you just had standard IVF it would be probably cheaper than Australia, but with the PGD and gender selection it’s about nine and a half thousand Australian um to go through the whole cycle.

JENNY BROCKIE: Corey, what if you get all female embryos and you don’t get a boy? What will you do?

COREY LEIGHTON: We would still have one implanted, I suppose. Um we still want that child, so yeah - we’d still go ahead with one of the embryos.

JENNY BROCKIE: David, ah why can’t this couple select the sex of their baby here in Australia?

DR DAVID MOLLOY: Well IVF units in Australia are licensed and you’ve got to agree to follow the NHMRC’s code of eth-ethical conduct. And the NHMRC in its wisdom has decided that gender selection just can’t be offered to Australian couples. So a very small, very select, very narrow committee of the NHMRC has decided to limit reproductive choice for couples in this country, and we can’t offer it.

JENNY BROCKIE: Now you used to do it.

DR DAVID MOLLOY: We used to do it, that’s right.

JENNY BROCKIE: And when did that stop?

DR DAVID MOLLOY: In about 2004.

JENNY BROCKIE: And what did most people in Australia choose?

DR DAVID MOLLOY: Well, surprisingly, ah and this is also true in the United States, our requests for gender selection were about eight to two for girls versus boys.

JENNY BROCKIE: Mm, interesting, eight to two?

DR DAVID MOLLOY: Yeah, it’s even politically correct, yeah!

JENNY BROCKIE: Alright, Vijay, what do you think of the idea of being able to choose the sex of a baby, particularly given your background, where you come from?

VIJAY YADAV: I’m totally against it. I come from India, for people who don’t know me. I mean all of you don’t know me! But um um in India i-it’s the opposite of what um the ratio it is. It is more boys ah as opposed to girls, and um the recent numbers show that for every 100 girls there are about 110 boys.

JENNY BROCKIE: Is gender selection allowed in India?

VIJAY YADAV: It’s illegal in India, and people still are able to do it.

JENNY BROCKIE: So what would happen in India, do you think - if there was gender selection?

VIJAY YADAV: You’d see a whole lot of boys and"¦.

JENNY BROCKIE: Why?

VIJAY YADAV: The reason I think in my head why this has ah come about is because of two very distinct things, one being the dowry system in India, which is still very prevalent in in the society.

JENNY BROCKIE: This is where the woman has to provide a dowry when she’s married?

VIJAY YADAV: Yes, yes. So every time a couple, you know a family is about to have a child and it turns out to be a girl, there is a whole lot of things going through the parent’s mind, even before the baby is born. And the first and foremost thing I’d say would be how- where would be - where would we come up with all this money from to sort of you know marry our daughters into the family that we want to marry? . . .

JENNY BROCKIE: So it’s cheaper to have a boy?

VIJAY YADAV: Yes!

JENNY BROCKIE: Yeah. Imtiaz, what about you? You’re from Bangladesh. Does Bangladesh have sex selection?

IMTIAZ MULLICK: No, no, no. Bangladesh don’t have it.

JENNY BROCKIE: Okay. And what would happen if you did?

IMTIAZ MULLICK: Obviously boys and boys all.

JENNY BROCKIE: All boys?

IMTIAZ MULLICK: All boys.

JENNY BROCKIE: Everybody would want boys?

IMTIAZ MULLICK: Yeah.

JENNY BROCKIE: Um Turkan, what do you think about this?

TURKAN AKSOY: I’m for it. I mean having a child is a choice, and if this wonderful couple is a great example, they’ve gone far and wide to be able to make a choice of having a boy, because they want to balance out their family. I mean good on them! And I think that people have to be able to make that choice and not be judged for that.

JENNY BROCKIE: Okay, so you wouldn’t be concerned about - What’s your cultural background?

TURKAN AKSOY: I’m from a Turkish background. But I do understand what happens in other countries, and culture plays and finances play a big part in it. But in Australia . . .

JENNY BROCKIE: So do you see any dangers with it at all, culturally?

TURKAN AKSOY: Not in Australia I don’t. In other countries, yes - I mean the fact that there is an imbalance in India shows that there- it can get quite unbalanced. But in Australia, I don’t believe that there’s issues like that.

JENNY BROCKIE: Mm. Jin, you’re from China originally. What do you think?

JIN JING: My dad always wanted a boy, but you know I brought up the best way I could- they could um support me. I think there are, you know, parents out there probably have reason to select genders, but I don’t think it should be, you know, that readily available to everybody.

JENNY BROCKIE: 'Cause China is interesting, yes?

JIN JING: Yes, yes. . . .

JENNY BROCKIE: As a, as a study in this with the one child policy.

JIN JING: Yes, we have far more boys than girls.

JENNY BROCKIE: So is sex selection going on in China at a formal level or an informal level, or both?

JIN JING: I think informal level. Like my friends back in China who are having babies at this age, if they’re going to ultrasound they wouldn’t be able to know the sex of the babies, just because probably you know do something about it if it’s a girl . . .

JENNY BROCKIE: Terminate the pregnancy?

JIN JING: Exactly, yeah.

JENNY BROCKIE: So terminate it if it’s a girl?

JIN JING: Yeah. It happens. It still happen in China, like you know, people going to great lengths to make sure they have a boy.

JENNY BROCKIE: Mm. Julian, you’re an ethicist, what do you think of sex selection?

JULIAN SAVULESCU, ETHICIST: Well I think this ban is both ineffective and profoundly immoral. It’s ineffective because any woman in Australia can have sex selection by having precisely what you mentioned, prenatal diagnosis, and then having a termination of pregnancy. And in fact there are huge problems with sex selection in India and China, and that’s not through this technology, it’s through prenatal testing and abortion and infanticide.

But more importantly it’s profoundly immoral, because people’s liberty to do things should only be restricted when they’re harming other people. And in Australia this couple is not harming anyone. As we heard, most people in Australia want to have a child to balance the sexes of the- of the children already in the family.

JENNY BROCKIE: But what if it plays to you know – a cultural structure that’s going to favour people having one sex over the other? Is that an ethical problem?

JULIAN SAVULESCU: You should, you should have evidence of that kind of harm before you fundamentally infringe something very important to people. This couple spent a lot of money and time, and we have no evidence of that in Australia. And in fact they’re going to have it in Thailand and come back to Australia anyway. So it’s, it’s both ineffective and an improper restriction of liberty in Australia.

JENNY BROCKIE: Rob, you’re a philosopher. What do you think?

ROB SPARROW, PHILOSOPHER: I think it’s way too simple to think of this as simply an individual choice. It’s a technological system, it’s a set of ah regulations. Ah for most of human history people simply haven’t had this choice. And people who succeed in getting a male child, that child may still grow up to want to play with dolls instead of ah action figures, wear perfume instead of aftershave, might end up cross-dressing. Ah we simply can’t guarantee that we’re going to have the child we want through this technology.

JENNY BROCKIE: Okay, Vijay, you’re nodding your head here.

VIJAY YADAV: I agree 100 percent to that, I mean it also sort of brings up this whole um trait of people wanting to select and choose and always have their way with things. I mean where would it stop? It’s discrimination under the guise of preference really, according to me.

JENNY BROCKIE: Alright, Danielle and Corey, what do you think listening to that? That you’re somehow being discriminatory on the basis of preference?

COREY LEIGHTON: I don’t think we are being discriminatory. I mean we’d like to have a child together and the option we’ve chosen is to try our best to have a boy. And if we can’t, well we won’t. But at the moment we’ll try our best that we can.

DR DAVID MOLLOY: Can I say something? This couple are not doing anything that hasn’t been done for centuries. People have been sex selecting for millennia. Aristotle had people tying off their left testicles to have a boy baby. I mean bull’s pizzle, herbs, you get 60 million hits on Google if you ask sex selection. People are sex selecting out there in the suburbs left, right and centre. The only thing that can’t be done in Australia is the one technique that really works. But you can time your intercourse, diet, have yoghurt, hang from the ceiling to sex select, but the only thing that’s banned.

JENNY BROCKIE: People at home writing down . . . Hang from ceiling!

DR DAVID MOLLOY: Hit Google, it’s all there! You don’t even have to buy the book now. You know, but the only thing that is banned in Australia is the one thing that really, really works well.

WOMAN: But by using that technology you’re taking it a step further, that’s direct human intervention that we didn’t have, you know, hundreds and hundreds of years ago. You can tie off your left testicle or whatever, but it’s not someone specifically selecting an egg down like the passage of a microscope. It’s a different process. I think it takes it a step higher . . .

TURKAN AKSOY: And again, but isn’t it their choice to do that? I mean you get a choice to get your ears pierced or to get immunised. But why can’t they have a choice to have a son over a daughter?

MAN: I don’t think anyone’s making it compulsory, if you don’t want to select – that’s fine. But this couple do.

JENNY BROCKIE: Okay.

WOMAN 2: Freedom of choice is most important. I think you know as a democratic society here in Australia we should be able to say as, well for me a-as a woman, what I do and don’t want to do with my body and what I do and don’t want to do with my partner. And I agree with the point before, you know, as long as it’s not um infringing anyone else’s rights or imposing on anyone else.

JENNY BROCKIE: Okay, anyone like to take up? Julian?

JULIAN SAVULESCU: I think it’s really insulting t-to say to people like this that they’re discriminating what matters is how they’ll bring up their child and how they treat other people, not what choices they make about embryos. I think choosing between embryos is not discriminating against people, it’s deciding what child to have in the future.

JENNY BROCKIE: But can you understand why people would be concerned about where this might go, how far it might go?

JULIAN SAVULESCU: Well the problem in India, as we heard, is the dowry system and the social and cultural structures, the religions. Those are the things that should change, and not how people choose to repro - These are symptoms of a problem.

WOMAN: And as Jenny said, when does that stop? Where do you draw the line? Are you- Is the next thing that you’re going to have a child with brown hair because you want them to have brown hair and have a better life chance, something like that? I think it’s, it’s a risky area.

JENNY BROCKIE: Rob?

ROB SPARROW: Look, I think it’s naive to think that - you know India’s sexist, China’s sexist and that there’s no sexism in Australia. And that having a technology and an institution that says look, it’s very, very important whether your child is a boy or a girl because boys are like this and girls are like that. But that isn’t sending some sexist messages as well.

JENNY BROCKIE: So you’re against it?

ROB SPARROW: Yes, yes.

JENNY BROCKIE: Yeah, so you’re against it for potential reasons rather than actual reasons? Or are you against it because David’s saying eight to two girls to boys at the - in terms of the people that he saw?

ROB SPARROW: Ah, it’s not just about the consequences in terms of who’s choosing boys and who’s choosing girls. It’s about a society-wide message saying - it’s if you have a girl, that girl is going to be like this; if you have a boy, that boy is going to be like this . . .

DR DAVID MOLLOY: It’s important to draw the difference though between gender balancing, which is what this couple are doing, and choosing the sex of your first child, you know. I’m"¦.

JENNY BROCKIE: So you think there’s an ethical difference there between those two things?

DR DAVID MOLLOY: There’s certainly a big practical difference. You know, if you allow people to choose only one child and one gender, you get the India/China problem. If you allow gender balancing, which is really what I’m for, then basically you keep the ratio about right, because you know if you’ve had three girls and then you have your one boy, you’ve had three boys and you have your one girl, it shuffles itself out.

JENNY BROCKIE: So does that mean you wouldn’t do this selection for a first child?

DR DAVID MOLLOY: I’d be hesitant to, yeah . . .

JENNY BROCKIE: As a medical practitioner?

DR DAVID MOLLOY: Yeah, I’m really in favour of gender selection for gender balancing, and I think we need to be very careful about providing it just for first children.

JENNY BROCKIE: So you think there’s a big difference between those two things?

DR DAVID MOLLOY: That’s right.

JENNY BROCKIE: What does everyone else think? Julian, big difference?

JULIAN SAVULESCU: No. I mean I think in countries like China and India maybe. This is- this is Australia, it’s not China or India. There’s no evidence there are sex ratio problems. And Rob’s speculations about you know the message this is sending I think are just completely false. This couple are sending a message that they’ve had a number of you know children of one sex and they want a child of a different – perfectly reasonably!

JENNY BROCKIE: Louisa, what do you think?

LOUISA WALSH: I was gonna say that it seems um sort of massively hypocritical to sort of say oh not for the first child, but for children following. I’m sort of quite undecided, like about gender sex selection. But then if you’re allowing one and disallowing another, I mean this this gets very complicated and very thorny and brings up a lot of issues that are discriminatory in essence themselves.

JENNY BROCKIE: So better not to do it at all?

LOUISA WALSH: Yeah, probably!

JENNY BROCKIE: What do you think, Stella?

STELLA YOUNG, DISABILITY ACTIVIST: Who says it’s okay when, you know, is it okay for this couple to balance the gender in their family? Um would it be okay if this was their first child and they had a preference? Ultimately I think you’re saying that the doctors are the ones who make those calls.

JENNY BROCKIE: Is that right? The doctors do make the call, really?

DR DAVID MOLLOY: Not really. You know, we’re the"¦

JENNY BROCKIE: The law makes the call or the framework makes the call at the moment.

DR DAVID MOLLOY: That’s exactly correct . . .

JENNY BROCKIE: And that’s under review, yes?

DR DAVID MOLLOY: Yeah, and what I’m"¦

JENNY BROCKIE: But you’re saying you would make the call as a doctor, because you have an ethical- you see an ethical difference between those two things?

DR DAVID MOLLOY: No. What I’m doing is I’d like to see the law changed and I think the best way to change it is by stages. And we do have examples internationally where if you can only choose one baby, then what happens, or one gender, then what happens is imbalances occur. Gender balancing is a safer first step than open slather gender selection, and so you know Julian’s got a very good point. It is slightly hypocritical, it is slightly discordant. But the fact is that if we’re going to relax in Australia and allow some gender selection, as I believe passionately we should, gender balancing is a good first step.

JENNY BROCKIE: Okay. I wish Myles could talk. I really - I really do. I think he really wants to talk, but he just can’t quite get there.

MELISSA HUNTER: Yes.

JENNY BROCKIE: Um David, let’s leave sex selection behind for a moment, and let’s talk about other things that you can identify, other genes that you can identify and screen for at the moment. I mean I know there’s a long list of diseases and things, but what are some of the key things that we now can screen for?

DR DAVID MOLLOY: Probably the most important one that’s really on the map now is cystic fibrosis. One in 24 people carry the gene in the community. There’s now a screening test that will pick up over 80 percent of carriers, and IVF can reliably pick embryos that carry the cystic fibrosis gene and we can prevent cystic fibrosis couples from having cystic fibrosis children.

JENNY BROCKIE: Brad and Melissa, we’ll get back onto cystic fibrosis in a moment. Brad and Melissa, and baby Myles, welcome. And you didn’t choose Myles because of his sex, did you?

MELISSA HUNTER: No, no.

JENNY BROCKIE: Tell us what you - why you decided to go through the process you did and the reasons why?

MELISSA HUNTER: Well we found out that we were both cystic fibrosis carriers. Um so we automatically just went straight through to the IVF process, using PGD, so we didn’t actually have to, you know, have a child with cystic fibrosis. So basically cutting a long story short, two and a half years later and six cycles of IVF/PGD we have this little man.

JENNY BROCKIE: You checked out the chances that the two of you had of this before you went through this process, yes?

BRAD HUNTER: Yeah, we were a one, one in four chance ah of having that child with cystic fibrosis.

JENNY BROCKIE: How did you feel about that possibility of having a child . . .

BRAD HUNTER: I wasn’t going to take that risk. I think life is hard enough as it is. Bringing a child into the world, let alone one with ah special needs. And mentally I don’t think we were ready for that in our life, and we want to give the best chance for our baby boy or baby girl, whatever may have been.

JENNY BROCKIE: Louisa, you have cystic fibrosis?

LOUISA WALSH: Yes, I’m a child with special needs!

JENNY BROCKIE: How do you feel hearing that?

LOUISA WALSH: Look I guess, you know, I am pro-choice and so sometimes that means that people make choices that are uncomfortable or that you don’t necessarily agree with or that challenge you. Um I guess this sort of, this sort of concept that perhaps people or children with CF suffer or that their lives are somehow less because of their CF is very interesting to me. I don’t feel that I’ve ever been a sufferer - my life has been difficult at times, but I think everybody has difficult times. And mostly because of m-my parents’ influence I was brought up to think that I was no less, no less capable than my sibling, my brother who’s four years older than me and doesn’t have CF.

Treatments have got better, gotten better and better, so it means that I’ve never actually caught up to my life expectancy. So I’m still, because now it’s in the late 30s. So I think you know having a child with CF these days, um life expectancy still isn’t as long as someone without CF obviously.

JENNY BROCKIE: Can you understand Brad and Melissa’s choice though?

LOUISA WALSH: Look, I can. And like I said, you know, I am pro-choice and people make difficult choices. And some of those choices will challenge me. But at the same time I think that there’s a lot that people miss out on by not having by deciding against having children with um either disabilities or chronic illness. There’s a lot of value in being a person with a chronic illness. I’ve learnt a lot, a lot of my life experience I wouldn’t have had if I didn’t have CF.

My brother has never chosen to screen, to see whether he’s a carrier, because he and his wife made the decision that even if they happen to have a child with CF, that to them because they’ve grown up with me, his wife has known me since I was 18, they’ve seen the things that I’ve gone through and they sort of think, oh we could cope with that.

JENNY BROCKIE: Brad and Melissa, what do you think listening to that? . . .

BRAD HUNTER: Look my feeling on this is that through today we’ve got all these great ah help that we can have through genetic testing, and I guess we could stamp out this disease, cystic fibrosis, through genetic testing. And anyone can be tested, anyone here in the audience, there could be two, three people in this audience that are carriers, sitting here now with us. And it’s as simple as a mouth swab to determine if you’re a carrier of CF.

JENNY BROCKIE: What if you hadn’t been able to have an embryo that was free of the cystic fibrosis gene? What would you have done then, do you think? Would you have implanted an embryo . . .

MELISSA HUNTER: We did do - Yeah, we did do it. We actually did two carrier, two embryos transferred that were carriers. So we were happy with obviously a baby carrying the gene of cystic fibrosis. We just, we as a couple weren’t prepared to have a child with cystic fibrosis. And I think it comes back to us being perhaps selfish, that if we you know did end up having a child with you know potentially a life-threatening illness, then we were kind of selfish to do that.

JENNY BROCKIE: I don’t want you to feel defensive about this . . .

MELISSA HUNTER: No . . .

JENNY BROCKIE: Because it’s just different points of view, you know . . . I really don’t want you to feel that you have to be defensive about it because . . .

MELISSA HUNTER: Oh no, definitely not.

JENNY BROCKIE: Louisa?

LOUISA WALSH: I actually find that sort of the easiest thing to understand, so people, couples owning their own feelings about having a child with a chronic illness or a disability. It’s actually easier for me to conceive than this sort of nebulous idea that that child’s going to have a bad life because they have some sort of disease. I think the fact that you guys have said it was our choice as a couple because we didn’t feel that we could parent that child adequately. Now I’m sure you actually could’ve, because I don’t think it’s - You know, I don’t actually think it’s that that difficult.

MELISSA HUNTER: No.

LOUISA WALSH: I mean my parents did it, probably gonna watch this. No, they’re great, my parents are great! Um but you know, they - It’s a situation that you don’t know until you get into it.

JENNY BROCKIE: Julian, you say that we shouldn’t tolerate children being born with genetic disorders. Why?

JULIAN SAVULESCU: Well, I wouldn’t - don’t know that I’d put it that strongly! But I do think we have an obligation, as was said, to try to have healthier children. I mean if we put folate in cereal in order to prevent spina bifida. Now if there was some vitamin that we found that could prevent cystic fibrosis, then of course we should put that in the cereal. I mean that’s as straightforward as anything. And I think there’s a big mistake that’s made between how we should treat people and how we should treat diseases. And of course people all deserve equal concern and respect and opportunities and choices, equal choices. But diseases are not people and cystic fibrosis is a bad disease.

Every person who wants to become pregnant could be given carrier screening so that they know what the risks are of having a child with cystic fibrosis, Tay-Sachs disease, lots of conditions. And they could be offered free. I mean I was shocked to hear that the government doesn’t support this, and they could be offered you know free testing and free, you know, facilitation of their decisions to have a child who’s healthier rather than suffering from a serious disease. So disease is not the only thing that represents an impediment in our lives. And all of us have limitations of different kinds. If we can overcome those and make it easier to have better lives, I can’t see the reason why we shouldn't. We will always have disability and disease and injury. There will always be ah things that happen all through our lives so there’ll be plenty of that to go round. Life will always be difficult. Why make it more difficult?

JENNY BROCKIE: Okay, lady over here. Yes?

MARGOT KELLY: It’s the use of the word to have better lives that I think is really loaded, that’s really implying that if we haven’t stamped this out yet, people who are already living with these conditions have an inferior quality of life. So while, you know, while we do want to do the best to make sure people don’t have to suffer, the flow-on effects of in society of how we then view people who do have these diseases and who haven’t been stamped out yet, that’s where it gets quite dangerous.

JENNY BROCKIE: Stella, y-you’re an activist for people with disabilities. What do you think about this?

STELLA YOUNG: Um look I find it really confronting to have conversations about whether or not it’s moral to let people with disabilities exist, people with whether you want to call it diseases or genetic conditions or whatever you want to call it. Louisa and I, you know, we both have them, lots of different conditions that some of those qualities are seen as bad. Like we said before, someone said before that CF is a bad thing. Um I don’t know that that’s necessarily a fair statement. I don’t consider the condition that I’ve got to be a bad thing. I consider it to have really enriched my life, and my family considers it to have enriched their lives as well. And I think that if we lived in a fair and equal society where everyone had equal rights, disability or genetic conditions or diseases or whatever you call them, wouldn’t necessarily be such a disadvantage. My issues in my life come not from the fact that I break my bones occasionally, they come from the fact that I can’t get into the vast majority of public buildings I want to get into. Those are things that we could address and we could fix.

JENNY BROCKIE: So what do you think of genetic screening?

STELLA YOUNG: Um look, I, like Louisa I’m pro-choice and I think people should be able to make decisions based on who they can parent, they were told after I was born that they really shouldn’t have any more children. Ah by the time they pinpointed the exact genetic issue with me, they’d gone on and had two more, because they said this is not bad? We don’t think so, we want more kids, let’s have two more. They say in many ways I was one of their easiest children because I didn’t have independent mobility until I got a chair. So I stayed where they put me!

It’s easy for people to support my right to exist now, but when I was a cell, when I was an embryo, when I didn’t have that same right to be alive - it’s an entirely different story. And people do say things like but what about the suffering? And those people who say that, they come from positions of privilege and also of ignorance. The assumption that my life has involved suffering is a prejudiced assumption. A friend of mine who suffers from incredibly chronic depression, he has suffered far more in his life than I have in mine from my condition.

JENNY BROCKIE: Julian? Your reaction to what Stella is saying about the, about . . .

JULIAN SAVULESCU: Well I think it’s certainly true that much of the disadvantage that people with disabilities suffer is from the way in which society is constructed. I think that’s correct. But I think there’s also an element of inherent disadvantage. If I said to people in this room that you have a virus and you’re going to end up with Osteogenesis imperfecta, unless I give you this treatment, everyone would be clamouring for that. And nobody thinks we shouldn’t be looking into treatments for Osteogenesis imperfecta and trying to alleviate that condition and that shows that people inherently view this as some kind of disadvantage.

STELLA YOUNG: I haven’t overcome Osteogenesis imperfecta, like no amount of you know putting on a happy face will make it go away. I’ve incorporated it into my identity and it’s something that has made me who I am and I’m fiercely proud to be a disabled woman, to be a woman with Osteogenesis imperfecta.

LOUISA WALSH: Yeah, and I think living with these - with genetic conditions and makes- gives you a lot. It gives you a lot of resilience, it gives you a lot of strength.

JENNY BROCKIE: Would either of you want to have children with your conditions?

LOUISA WALSH: I’m not bothered!

STELLA YOUNG: Yes, yeah. I think that um being someone who is - I’m really passionate about disability culture, and I think that disabled adults in particular have a lot to offer disabled children. And there will always be disabled children. I would consider it a great privilege to parent a disabled child.


JENNY BROCKIE: Tonight we’re talking about genetic screening, everything from choosing the sex of your baby to eliminating disease. David, you wanted to say something about what we were talking about before the break.

DR DAVID MOLLOY: Oh I pretty much admired Stella’s resolve but I think in in balancing the argument, hardly a week would go by in my practice where I don’t have a couple or a patient who’s got a genetic disability come and see me and say look, can you make sure our children don’t have this because I don’t want them to go through what I’ve had to go through in my life.

JENNY BROCKIE: Debbie, that’s a good point to talk to you because you and your husband do wish you’d had a choice to screen out the genetic disorder that your 12 year old son now has. Can you can you explain to us what he has.

DEBBIE WALLER: He has a blood clotting disorder called anti-thrombin deficiency so it predisposes him to his blood clotting basically, and in the newborn period that’s exactly what happened, he had what’s called extensive venous sinus cerebral thrombosis so he had extensive blood clots in the veins of his brain. From that, he now has severe cerebral palsy, um he also has epilepsy and his seizures can last up to 30, 40 minutes if we don’t give him medazolum, which knocks him out. Um probably for the first four, five years of his life he was having 30, 40 minute seizures if not daily, every second day. Um it’s a bit better now, under control. He also has cortical visual impairment, which is from the cerebral palsy and he has sensory processing issues so he’s a 24 hour a day care job basically, so.

JENNY BROCKIE: Let’s have a look at your family.

THE WALLER FAMILY:

DEBBIE WALLER: Sometimes you sit here and think, "How does this happen?" Your mind wanders and you think of the movie 'Sliding Doors' where life goes one way or life can go the other way.

Your mind plays tricks on you, you think of Keeden running in after school with his backpack on and a couple of mates behind him and yacking away and having a good time. And then the mind plays the other trick and you obviously have Keeden, as much as we love him, but he doesn't talk and can’t walk and doesn't go to school.

MR WALLER: Keeden's made that. It's toast. It's nice. You can eat it. It's nice.

Keeden wants to do things and he can't. We have to keep him happy and push through the day.

DEBBIE WALLER: Nobody would want a life like this for their child. Nobody would want – I assume - a child with severe disabilities.

MR WALLER: It's a hard life. It's a life of suffering for the child, for the families, the extended families. I used to surf before Keeden came along, every day and work and I don't do any of that anymore. I can't. Once he was born, any mates I had, they dropped off pretty much. You don't fit in anymore. You're a carer, you're a nurse type thing. He's a wonderful little boy. He's here. We look after him till the day he dies.

When there is something that's preventable, my view is why not do it, really?

REPORTER: Prevent it?

MR WALLER: Yeah. A genetic condition that can potentially kill someone and give them brain damage, why not stop that? I personally think it would be a better world. There's people that don't have genetic conditions in the world that are suffering.

DEBBIE WALLER: He should not have – Keeden himself should not have been born. He shouldn't be here.

JENNY BROCKIE: Debbie, would you have gone ahead with that pregnancy if you’d known?

DEBBIE WALLER: No. No. I was only 24, 25 at the time, had we have known we certainly would have stopped and we would have gathered as much information as we could so that we had, just like this couple here, the right to make a decision as to what we wanted to do as, you know to have as much chance of having a healthy child as the next person.

JENNY BROCKIE: But you didn’t have that information?

DEBBIE WALLER: No, no unfortunately not. We also went through IVF for infertility reasons and it’s a long story, but to cut it short in amongst that IVF procedure this condition was discussed so our IVF practitioner knew that my husband had this condition, unfortunately the process went astray and we didn’t get genetic counselling and we just went through IVF and Keeden was born and then after he was born we found out he had this condition and yeah.

JENNY BROCKIE: So how have you felt listening to this discussion?

DEBBIE WALLER: I guess, I think if people have a right to make decisions about their lives and their bodies and their, you know, their reproductive rights, then you know they should be allowed to make decisions based on, you know, selecting healthy embryos. Um as like my husband said in the picture there, we’ve lost our house 'cause we’ve lost our incomes, we’ve, our lives have been completely turned upside down. We have to care for our child, which we love, 24 hours a day for the rest of his life. He’s in nappies, he drinks from a bottle, he’s never going to go to school, he’s never going to grow up, he’s going to be a baby for the rest of his life and that’s not something that, any parent would choose. If something went wrong in the delivery process or something happened by nature, there’s nothing you can do about that but we didn’t get the right to make a decision.

JENNY BROCKIE: Stella, can you understand why Debbie feels like that?

STELLA YOUNG: I can but I wonder if you would feel differently if you had a different system of support around you. I mean what we know about the Australian system

DEBBIE WALLER: Yep

STELLA YOUNG: "¦is that the disability support system is absolutely stuffed.

DEBBIE WALLER: I’m sure it would have made life a lot easier but I mean I, I certainly wouldn’t sit here and say that we still wouldn’t have changed like the course of action that we took. I guess I don’t understand why people wouldn’t want to have a healthy child if they’re able to.

JENNY BROCKIE: Leon, what you, I’d like to hear from Leon on this.

LEON SUGRIM: But I think you know the discussion that we’ve had so far is it’s sort of struggling to establish where the line should be drawn and I think, you know, the other flip side of the coin is some people with disabilities lead a very normal life, they lead a very full life and we’ve had some in the audience today. For a foetus with Down Syndrome the most dangerous place is in the womb because about 80 or 90 percent of Down Syndrome foetuses are terminated. So I, and now if we screen Down Syndrome out of the population, I think the population will be poorer, the society will be not as rich because they do, you need imperfect plus perfect people in society. They all have something to contribute I think.

DEBBIE WALLER: And I agree with you but that’s everybody’s choice as to whether they want to have a child who has that.

STELLA YOUNG: You are talking about choice though as though these choices exist in a vacuum, they don’t. I’ve got a friend who has a 7 year old daughter with down syndrome who says that her choice to carry her pregnancy to term was not supported, she had to fight that every step of the way. She fought against having the testing in the first place, was pressured into it, then found out she was carrying a child with down syndrome, was pressured to have a termination. She said that she was asked so many times, are you sure, are you sure, that the translation became are you mad.

MELISSA HUNTER: Well cystic fibrosis in particular, one in twenty four Caucasians carry the gene and look how many people in the audience tonight, there’s potentially three or four of you that carry the gene. Now it’s only where it presents the problem when there’s two people that actually get together that, you know, we have that one in four chance, but I think when you’re coming to a child’s life, that you want to have a healthy baby, then why not allow it. I think it’s..

JENNY BROCKIE: Louisa, do you want to "¦

LOUISA WALSH: I mean there’s always going to be people who choose to have that that child or to not have testing so I think this idea that we can, we should and we can and we should get rid of CF or any other condition is sort of, again it’s a flawed idea because there’s always going to be people who, who don’t choose to get testing or choose to take that

BRAD HUNTER: But that’s their choice not to do that, but as the doctor said we’ve got a real problem with cystic fibrosis in Australia, why why why don’t we screen for this.

LOUISA WALSH: Yep but then it’s also about, you know, what’s the I guess status of people who then go onto live with these conditions when it’s seen to be something that could have been stamped out.

JENNY BROCKIE: So is what you’re worried about that the status of people with the conditions will get worse"¦.

LOUISA WALSH: Yeah

JENNY BROCKIE: "¦.if this screening becomes more widespread, is that a fear?

STELLA YOUNG: Absolutely. That’s that’s true.

LOUISA WALSH: Yeah.

JENNY BROCKIE: What do you think about that Leon?

LEON SUGRIM: Yes I think, I mean like I said before, I mean there are some things, some that I can understand if it’s a disease or whatever and you can screen for that that and I think we are struggling to draw the line, where do you draw the line. I’ve seen a lot of down syndrome 'cause there’s a whole community of them, they live perfect lives, they are happy.

JENNY BROCKIE: Well your daughter’s sitting right beside you, Rachel.

LEON SUGRIM: Yes

JENNY BROCKIE: And I know that you’ve had a conversation with Rachel about being here tonight

LEON SUGRIM: Yes

JENNY BROCKIE: And about whether she’s comfortable about being here tonight and you said you were Rachel, yeah? Yeah?

RACHEL SUGRIM: Yeah.

JENNY BROCKIE: What do you think about what you’ve heard? Do you do you want to say anything about what these people are saying?

RACHEL SUGRIM: No.

JENNY BROCKIE: No. Is it interesting to you to be listening to this?

RACHEL SUGRIM: Yes.

JENNY BROCKIE: Yeah, okay. Alright, but you don’t want to say anything.

RACHEL SUGRIM: No.

JENNY BROCKIE: Okay. Julian, I’m going to quote something back at you that you’ve said again, you’ve said parents have a moral obligation to create the best child possible with the technology available. What do you mean by the best child possible?

JULIAN SAVULESCU: Yeah well as you heard, if you have a range of embryos and you can do certain genetic tests, you should pick the embryo that on the basis of the tests is going to start off with the least obstacles in life.

JENNY BROCKIE: Okay, Karola, I wanted to ask you about this because you’re a philosopher of science, your reaction to what Julian’s been saying?

KAROLA STOLZ, PHILOSOPHER OF SCIENCE: All of that is of course based on certain assumptions of what can science can do and what assumptions of what genes do, after all I our genome is not just a box of apples which you can open and you can pick out the wrong the apples which are rotten and throw away, we have certain well working genetic tests where we have a very good ah probability of what this ah this particular genetic disease, this mutant is doing but for the most cases, we don’t.

JENNY BROCKIE: Julian what other kinds of"¦.

KAROLA STOLZ: So what we’re doing then is not designing babies, we’re doing astro-genomics in a way. You get, astro genetics.

JENNY BROCKIE: What are astro-genetics?

KAROLA STOLZ: Well it’s a little bit like asking the stars what but probably the percentage is a little bit higher but not much for many genetic mutations.

JENNY BROCKIE: So you’re not talking about things like cystic fibrosis..

KAROLA STOLZ: No

JENNY BROCKIE: You’re talking about the other things that that are now being identified.

KAROLA STOLZ: Yeah, the general idea, now there is not a gene for schizophrenia, right, there may be 20,000 oh well, well let’s say 5,000 genes for schizophrenia, right, you cannot screen for them.

JENNY BROCKIE: Okay Julian, what kinds of things are being identified at the moment, genetically, what other sorts of things?

JULIAN SAVULESCU: Let me give you some that you can test for now, there’s a there’s a gene, the mayo A gene, comes in two variants, okay the low and the high activity variant, okay. If you have the high activity variant, two thirds of people have this variant, then you’re protected in early childhood if you’re abused and deprived as a child, you turn out more normal, less likely to be a criminal than if you have the low variant. Okay. Now that effects one third of people.

If you have the low variant plus social deprivation or violence as a child, you’re much much more likely to be a criminal than the ordinary population or indeed even somebody who’s had social deprivation. So here is a test that you could do today on top of your genetic tests for something which seems to have some relevance.

LOUISA WALSH: So then if you choose the high variant, you can abuse your child at will without them going on to have problems later in their life.

JULIAN SAVULESCU: Ah and this is again a mistake to think that how we treat our children is determined by how we select the genes, I mean these are completely separate events.

KAROLA STOLZ: We know that there are there are hundreds or thousands of genes involved and any- any one you can screen for will only have a very very very small effect on the final outcome of schizophrenia.

JENNY BROCKIE: So you’re saying that it’s not eh just because the gene is there it doesn’t necessarily mean that it’s going to have a uniform result or "¦

KAROLA STOLZ: Yeah so so . . .

JULIAN SAVULESCU: But why not reduce the chances of schizophrenia, even by a little bit. What’s wrong with that, isn’t that, truly that’s a rational thing to do.

JENNY BROCKIE: Okay. Hang on over here.

MAN 2: Where do you draw the line? Like if have a, the people say that there’s a gay gene now, would you allow parents to say oh I don’t want to have a gay child so please eliminate the gay gene. Like you can’t give freedom of choice to parents nil- like willy nilly and expect them to um have kind of moral ethics at all points of time.

KRISTINA TJERNSTROM: Eh I’m the mother of a child with cerebral palsy. I love him dearly, I’ve loved him from the first day he was born and I went on loving him even when he showed that he had cerebral palsy. I have been thinking of it many times, what should have happened if I had had a choice to get a real healthy young man, a rather healthy baby and he would have had a quite different life.

JENNY BROCKIE: Would it have made a difference to you, would you have made a choice not to have him.

KRISTINA TJERNSTROM: I certainly would have made the choice to have a healthy child for the sake of the child mainly. A little big egoistic also, little bit for the sake of me but above all for the sake of the child.

JENNY BROCKIE: Julie, you have a child with down syndrome"¦

JULIE FISHER: I do yes. Yes

JENNY BROCKIE: Yeah, what do you think about this listening to this discussion?

JULIE FISHER: Look there’s lots of different variations with disabilities, you know I can certainly understand where the lady behind me is coming from and the lady on the stage there. Kids with Down Syndrome, there’s lots of varying degrees with that too but they’re very active in our community. They can be taught to be anything they want, they can work, they can drive, I found out that I was having my son with downs and I chose to go ahead with that because I didn’t want anyone to cry or grieve when he was born, I wanted everyone to be happy when he was born and that’s what happened and he’s had nothing but unconditional love since he’s been born and he’s just amazing, he’s doing some great things, great with speech, all sorts of things and the community are really supportive as well.

JENNY BROCKIE: Mm and is he your only child?

JULIE FISHER: No I’ve got two older sons as well, so yeah I’ve got two average children as well but I consider Darcy yeah just as average as they are.

JENNY BROCKIE: Julian, tell us just a little bit about other genes that could be identified for other things, like intelligence, psychopathy is one thing that’s being discussed.

JULIAN SAVULESCU: The callous unemotional personality in children, we have to talk about Kevin, that film, is about this condition that goes on in many cases to psychopathy. This has a very strong genetic contribution. Now if you identified the genes that contributed to that condition in children, that’s something that you could make selection decisions about. Now you know it seems to me that in addition to diseases, if we have information about these conditions, even if it’s weak, even if the chances are only 5 percent, 1 percent, why shouldn’t we use that information?

JENNY BROCKIE: So does that mean everyone goes through IVF, everyone goes through screening when they have a baby? Because at the moment it’s just the people who choose to go.

JULIAN SAVULESCU: Well it’s very expensive as we’ve heard, it’s still not quite as efficient as natural reproduction, but natural reproduction’s very inefficient. Only one in five embryos goes on to produce a baby normally and 5 percent of them are abnormal. At some point in the future, IVF will be more efficient and safer than natural reproduction and who knows, maybe more and more people who aren’t infertile will choose to have it.


JENNY BROCKIE: Okay so who here would test for those things with babies, would test for intelligence, who’d take up that option?

NIGEL LECK: Yep, absolutely.

JENNY BROCKIE: Yep.

NIGEL LECK: Yeah look if I was in the IVF and you- you’re presented with 20 embryos, of course you’re going to take the best chance, you’re going to get the kid with the best chance for whatever it is, what are you doing otherwise, you’re rolling a dice, I mean. Can’t we"¦

JENNY BROCKIE: So you’re going to check, so you’re going to check out for, what would you check out for?

NIGEL LECK: Yeah I, if yeah, obviously the genetic diseases, CF, etc and um"¦

JENNY BROCKIE: Altruism?

NIGEL LECK: Yeah actually, but intelligence"¦

JENNY BROCKIE: Intelligence?

NIGEL LECK: Sure, yeah absolutely intelligence. I can’t see a downside to that. Do you below average or over . . .

BRYLEE TODD: But the downside, sorry, the downside would be that the child"¦

NIGEL LECK: To intelligence?

BRYLEE TODD: "¦might be more intelligent than you

NIGEL LECK: I’ve already got that.

BRYLEE TODD: How are you going to cope?

NIGEL LECK: I’ve already got that . . .

DR DAVID MOLLOY: Julian, Julian’s selection is happening, it happens in donor sperm programs where the recipients pour over the characteristics of the donor looking for intelligence, social status, job status. That sort of selection, not genetic selection but gene- ah selection is already happening on a small scale.

MARGOT KELLY: Do that with a husband as well.

DAVID MOLLOY: Oh exactly.

JENNY BROCKIE: Sorry, sorry?

MARGOT KELLY: No you do that with a husband as well, you look for the best qualities that they could have. You choose someone who you think’s going to produce good children

DR DAVID MOLLOY: Exactly and this, the I guess the second thing is that that I still, even though I’m heavily involved in this, I still have a lot of faith in what I call the genetic tumble dryer. You know when those genes tumble mostly it goes very well. I mean we’re there to try and pick up the problems when the genes go bad and that’s what we’re currently doing, but there’s an enormous diversity in society and there’s a wonderful diversity and richness in our society that perhaps breeding that diversity out may not always be the best thing in the future and we should be very careful about it.

JENNY BROCKIE: I just want to ask, I just want to ask a few people here, a little bit more about what they would and wouldn’t choose. If that doctor sat down with you and said we can now test for altruism, intelligence, infidelity, psychopathy do you . . . somebody said infidelity was awesome over here. If you had a doctor who presented you with those options, I mean would you take them up?

BRAD HUNTER: I would take the option where they would be the best golfer in the world or the best tennis player in the world.

MELISSA HUNTER: So hopefully we get the money back.

BRAD HUNTER: That’s the option I would take.

JENNY BROCKIE: To support you in your retirement, yeah okay.

TURKAN AKSOY: If you could screen things for Alzheimer’s, if you can screen for alcoholism or any other kind of problems, like I mean we talked about schizophrenia or mental disorders, but if you could screen for those things in the future, why not. I mean they cause as much problems to people’s families and lives as you know having a child with a disability or not, I mean that’s just one aspect of it, people have a lot of aspects, in like particularly addiction problems, if I can screen my kid for addiction, give me one without any of those.

MARGOT KELLY: Is there actually going to be a an embryo that doesn’t have any problems with it, like are we going to be able to find something that’s not got an issue that’s going to cause problems later in life.

JENNY BROCKIE: Rob, what did you want to say?

ROB SPARROW: I think people’s thinking about this issue would change radically if they realised that the best child they can have is probably not their child, I mean we all have genes that we might wish that we didn’t have, if you really wanted to have the best child possible, you’d be looking around the community for people who had the best genetics, you’d be you’d be asking them for their embryos and people don’t do that, they want to have their child and that means they’re prepared to accept all sorts of things that won’t give their child the best life possible.

FEMALE: That’s not necessarily true though.

JENNY BROCKIE: So where"¦.

NIGEL LECK: Wouldn’t you have the best child you can have though? Your best child.

TINA ODLING: But what’s the best child?

NIGEL LECK: Best chance, best chance, I need to reword that.

JULIAN SAVULESCU: . . . these people are having IVF anyway, they’re having I- they’re already incurring the cost, they won’t be incurring any additional cost, at the moment the law prohibits them from accessing other tests which are available and I think that is profoundly immoral. First of all they should be free to access any extra tests and if it incurs any extra costs, maybe they should have to pay that, but it’s illegal in this in this country to do anything else than test for diseases. Now why’s that?

JENNY BROCKIE: Okay we do we do have to we do have to wrap up here, um where does all this leave us in terms of law because we do have laws around these things, we have decided um various things and the science is racing ahead. I mean how do we frame our attitudes to these things when they’re happening so quickly?

JULIAN SAVULESCU: Well I think the basic principal is we should give people freedom and liberty to make their own choices unless they’re harming others.

JENNY BROCKIE: But we’ve still got to frame laws and we’ve still got a situation where sex selection’s under review at the moment in Australia.

JULIAN SAVULESCU: Remove the ban, let people access tests, try to work out and encourage and persuade or engage in dialogue about what sorts of choices they should make but don’t stop them making choices about their own lives and families unless you’ve got a really good reason, and we don’t have any good reasons to.

JENNY BROCKIE: Stella what do you think we should do about this in terms of the frameworks around it?

STELLA YOUNG: You know we’d be naïve to think as it as someone said before that there’s no sexism in in Australia, we need to look at the broader social context and the laws need to reflect broader social values and make sure that they’re not based on prejudice and misinformation.

JENNY BROCKIE: Mm okay Rob, what do you think we should do?

ROB SPARROW: I think it’s a really bad idea to leave ah the future of human nature and our genes up to the free market or even to individual choice ah when the reality is there’s an enormous amount of money ah to be made here, businesses are offering these services, aggressively marketing them. We know where that goes.

JENNY BROCKIE: Okay we have to wrap up here, thank you very much too for all your stories tonight. It’s been ah a fascinating discussion. You can keep talking on our Facebook page on Twitter or on Insight’s website. While you’re there, you can also find information about some of the technologies that we’ve heard about tonight.