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JENNY BROCKIE: Hello, I'm Jenny Brockie, welcome everybody. Kirstie and Lyle, you're first cousins and you've been in a relationship for six years. Kirstie, when did you first meet Lyle?



KIRSTIE FISHER: I was nine years old and before then I didn't know he existed.



JENNY BROCKIE: And I think we've got a photo of you when you were quite young here.



KIRSTIE FISHER: Yes.



JENNY BROCKIE: When you were cousins - that's you on the chair?



KIRSTIE FISHER: Yes.



JENNY BROCKIE: And that's Lyle in the foreground?



KIRSTIE FISHER: Yes.



JENNY BROCKIE: Okay, how did you feel about him then?



KIRSTIE FISHER: I thought he was cute. I remember myself and my, another one of our cousins used to fight over him for the whole week that we were him, but yeah, at that time I just thought he was cute.



JENNY BROCKIE: So you didn't see him a lot, like you didn't grow up side by side?



KIRSTIE FISHER: No, we lived in Perth and he lived in Melbourne so that was the first time we'd ever met each other.



JENNY BROCKIE: And when did you first realise you were sexually attracted to him?



KIRSTIE FISHER: Probably when I was about 17. He came over for our auntie's funeral and he'd grown up and I'd grown up and I think that was when I was sexually attracted to him.



JENNY BROCKIE: And what did you think about that, about feeling sexually attracted to your cousin?



KIRSTIE FISHER: I didn't know at the time that it wasn't illegal so I tried to push the feelings aside and pretend that they weren't there.



JENNY BROCKIE: So you thought it was illegal at that time?



KIRSTIE FISHER: Yeah.



JENNY BROCKIE: That must have been pretty confusing?



KIRSTIE FISHER: It was, it was, and I think I went through a lot of relationships just to try and ignore the feelings I had with him.



JENNY BROCKIE: And did you tell anyone?



KIRSTIE FISHER: I told a couple of my friends and we're no longer friends.



JENNY BROCKIE: Did that happen straight away?



KIRSTIE FISHER: Yeah.



JENNY BROCKIE: That they just cut you off?



KIRSTIE FISHER: Yep, yep.



JENNY BROCKIE: What about you Lyle, when were you first physically attracted to Kirstie?



LYLE FISHER: When she was 17, like she said, when I was over there for our auntie's funeral so I think I would have been 19 at the time. The same sort of thing, she'd grown up, I'd grown up and it was more of a simple case oh, last time I saw you, you were just this little kid and now it's more, it's more of a grown woman type thing.



JENNY BROCKIE: And what did you both do about it initially, about that attraction?



LYLE FISHER: Um --



KIRSTIE FISHER: I tried to ignore it.



LYLE FISHER: I, I didn't really have an issue with it whatsoever. I was just like yeah, whatever, I'll go with it. She likes me, I like her, sounds good, just sort of slowly went from there basically trying to sort of see where it went without making it overtly obvious to everybody around.



JENNY BROCKIE: So what, you had a kind of secretive arrangement?



LYLE FISHER: Yeah, very much so.



KIRSTIE FISHER: A lot of webcam was involved.



LYLE FISHER: Yeah, a lot of webcam, a lot of texting, obviously like the week that I was there it was more sort of once everybody had gone to bed or gone out we'd sort of try and sneak some time together. Afterwards watch a movie or whatever.



JENNY BROCKIE: And did you tell your family or anyone about it?



LYLE FISHER: Not at that point, no.



JENNY BROCKIE: And you found out it wasn't illegal thanks to your mum?



LYLE FISHER: Yeah, I think she'd had, she'd had an idea, she sort of…



KIRSTIE FISHER: She guessed for a very long time there was something between us.



LYLE FISHER: Yeah, she very receptive with it, no matter how we tried to hide it.



JENNY BROCKIE: How long did try to hide it?



KIRSTIE FISHER: Um…



LYLE FISHER: Well basically it would have been from…



KIRSTIE FISHER: When I was about 17 to when I was about 22.



LYLE FISHER: Yeah, so probably a good five, six years.



JENNY BROCKIE: So how did it come out in the open eventually?



LYLE FISHER: Um, it was basically because of my mum, obviously she had the idea that something was going on and decided…



JENNY BROCKIE: Mums have a tendency to know those things.



LYLE FISHER: Yes.



KIRSTIE FISHER: And his mum ended up coming out and saying we know something's going on.



LYLE FISHER: Yeah.



KIRSTIE FISHER: Here's the paperwork, it's okay.



LYLE FISHER: Yeah, it's all legal, there's nothing wrong with it, just admit it. She came down with this big stack of paper on like past, past relationships of famous people and the wording of the law.



JENNY BROCKIE: Wow, some mum?



LYLE FISHER: Yeah, basically said look, get it out in the open, stop hiding it, we know what's going on and so yeah.



JENNY BROCKIE: Melanie, you're Lyle's sister, you're also Kirstie's first cousin?



MELANIE FISHER: Yeah.



JENNY BROCKIE: How did you react when you found out?



MELANIE FISHER: Oh, I was angry.



JENNY BROCKIE: Why were you angry?



MELANIE FISHER: Probably because they're cousins, we're cousins and it was just kind of, I don't know, a bit of a kick in the guts really, because we're family I think and to me, I personally don't agree with it, but because he's my brother, I'm happy for him.



JENNY BROCKIE: This is your child?



MELANIE FISHER: Yeah, this is Alex.



JENNY BROCKIE: Hi Alex.



ALEX FISHER: Hi.



MELANIE FISHER: I don't know, it was just when they told me, I had always had a suspicion but I think eventually when they did come out and tell me I was just angry at what they had done because I thought it was illegal and it was wrong and I think it was just a bit shocking really. To me, personally, it's not something that I would do but it's their life and if they're happy I'm happy for them.



JENNY BROCKIE: You're still upset about it though?



MELANIE FISHER: Yeah, yeah.



JENNY BROCKIE: So it sort of tapped something deep in you, was it hard for you as it became public?



MELANIE FISHER: Probably it was just that people tend to look at you differently if they know oh, your brother's in a relationship, oh they're with your cousin? Oh, even at recent times when I've told people I'm coming on the show to discuss it, they say oh, why are you going on and you tell them and straight away you see them take a step back from you.



JENNY BROCKIE: So strong social disapproval?



MELANIE FISHER: Yeah, oh absolutely.



JENNY BROCKIE: Hopefully they'll find out a little bit more tonight. Kirstie, how did the rest of the family react once it was out in the open?



KIRSTIE FISHER: For our joint side of the family, they all thought it was disgusting, it was wrong. I'm pretty sure after six years they're still gossiping about us. Personally, my father stopped talking to me and I haven't spoken to a word to him in about six years, so yeah, it was mostly…



JENNY BROCKIE: So total rift from your father?



KIRSTIE FISHER: Yeah, yeah.



JENNY BROCKIE: Over this?



KIRSTIE FISHER: There were many other things but this is the main thing and I haven't seen or spoken to him in six years. I don't even think that he knows about two of his four grand kids.



JENNY BROCKIE: Lyle, what's it like seeing Melanie that upset?



LYLE FISHER: Obviously being my sister it is worrying. Like it's been long enough, they should have either gotten over it or basically, cut us out of their life all together if they still had an issue type thing. So yeah, it is a bit concerning, obviously there's still an issue there.



JENNY BROCKIE: Strong feeling?



LYLE FISHER: Underlying issue there, yeah, about it.



JENNY BROCKIE: What about friends, how did they react?



LYLE FISHER: Most of the friends that I had at the time that I told, we were, we sort of stayed friends afterwards but from that time you could see it was a downward sort of friendship that basically evaporated into nothing. Like I don't speak to any of my friends that I knew from back then and some of them I'd been friends with for like ten years all through school. And basically, yeah, we don't talk to them at all or see them at all.



KIRSTIE FISHER: And we found that with friends it's kind of like you tell them and all of a sudden there's something wrong with you, you've grown a second head.



JENNY BROCKIE: And you've spoken about this openly in front of Alex?



KIRSTIE FISHER: Alex, yes, but he's not old enough to understand.



LYLE FISHER: He's not old enough yet to understand it.



KIRSTIE FISHER: But our oldest daughter she understands.



JENNY BROCKIE: And how did she feel about it?



KIRSTIE FISHER: It took her a little while to understand but now she's happy to go and tell her friends: My mum and dad are cousins and basically if they don't like it, then she's like well don't be my friend anymore because my mummy and daddy are happy, so.



JENNY BROCKIE: Okay. What do people think about cousins getting together? Can I get just some general reactions here? Cash, what do you think?



CASH: I'm under the impression that relationships within the family, is just wrong because I have a perception of like a theory of like incest. And I didn't also, before coming to the show today, actually realise that it wasn't illegal. I thought it wasn't, yes, that it wasn't.



JENNY BROCKIE: But it's legal?



CASH: Yeah, but it's legal, I was actually not aware of that at all.



JENNY BROCKIE: Yeah, I think quite a few people feel that way and are surprised. Ziad and Batool, you're first cousins and you're married. How common is it to marry your cousin in Iraq?



ZIAD AL-RUBAIE: In Iraq is common, as the same rate of the Middle East. I think nearly 50 percent of the marriages are related marriages, consanguineous marriages.



JENNY BROCKIE: So more than legal, it's actually quite widespread?



ZIAD AL-RUBAIE: Yes, it's legal, yes.



JENNY BROCKIE: And why do so many people marry their cousins in Iraq?



ZIAD AL-RUBAIE: I think the main reason is to increase the family ties because you know most of the families, they are grow together and they know each other's and they prefer to take or to marry their daughters or their sons to their sons.



JENNY BROCKIE: To someone they know?



ZIAD AL-RUBAIE: Yes, yes, because this is the tradition in Iraq.



JENNY BROCKIE: Batool, did you expect to marry a cousin, was that something you expected would happen?



BATOOL ZALZALA: In the beginning I didn't expect but we practice together in medical centre so, and I feel I saw him is good man and I don't know, handsome and a good education, like me, and I know him. This is the important that I know him, he's in my family, I know his mum, dad, I know his family so he's not strange for me. So this is one of the many points that I said okay, I agree.



JENNY BROCKIE: So was it an arranged marriage in some sense? Did your families arrange it for you or did you arrange it for yourselves?



ZIAD AL-RUBAIE: For us no, we arrange together, we take our decision and only once I told her about my feeling. I told her if you agree I will send our family and we are, the family arranged together the engagement and marriages.



JENNY BROCKIE: So I'm interested in where the lines are drawn across different cultures with this. You can marry cousins, who can't you marry within the family?



ZIAD AL-RUBAIE: You know, because we are Muslim and we allowed to marry cousin. But not allowed to, as you know, the sisters, the aunts.



JENNY BROCKIE: So first cousins, second cousins?



ZIAD AL-RUBAIE: Yes.



JENNY BROCKIE: Cousins once removed, all of that is allowed?



ZIAD AL-RUBAIE: Yes, that allowed, yes.



JENNY BROCKIE: Okay. Burak, you were born here and you have Turkish background, would you marry one of your cousins?



BURAK HALILOGLU: No.



JENNY BROCKIE: Why?



BURAK HALILOGLU: I just think it's a bit arbitrary because at my age my parents, well a lot of Turkish parents they expect me to get married at this point in my life.



JENNY BROCKIE: How old are you?



BURAK HALILOGLU: 24, and when you're not married, you know, they're either going to find someone for you and try to arrange a marriage or they'll just set up with the easiest option. For them the easiest option would set me up with one of my first cousins who may be single.



JENNY BROCKIE: And your parents would like you to do that, to marry one of your cousins?



BURAK HALILOGLU: Well it just seems like the quick fix, you know? I mean if I …



JENNY BROCKIE: Your dad's laughing there.



BURAK HALILOGLU: If I came home, if I brought someone else home to them, they're probably not going to raise any objections but I have been recommended by my parents, by my relatives, to marry my paternal aunt's granddaughter which is the extent that my parents are related to one another. And again, I just, it's just so arbitrary, I don't really consider that to be an option.



JENNY BROCKIE: Do you think you feel that way because you were born here? If you were in Turkey would you feel differently?



BURAK HALILOGLU: I don't necessarily think so because with my first cousins I've always had like a sibling like relationship with them and for me to suddenly view them as being a sibling to a marriageable prospect and therefore also a sexual prospect would, for me personally, would border on incestuous. I feel like I'd be crossing a certain barrier there.



JENNY BROCKIE: Husnu, how do you feel about this with your son, because your wife is your first cousin once removed, yes?



HUSNU HALILOGLU: Yes. Actually my mother-in-law, my mother-in-law, my father in law are first cousins to move here, right?



JENNY BROCKIE: Okay. I'm trying, I have a feeling, I just have a feeling about this program it's going to get complicated. Yes, go on?



HUSNU HALILOGLU: Okay, because I got married with my wife and we are both originally from same town. These days marriage breaks up so easy but if you got married with not, doesn't have to be, you know, close relatives, relation, but if it is someone who you know that makes it difficult.



JENNY BROCKIE: Okay, how are you trying to convince Burak to do this? Or are you trying to convince him?



HUSNU HALILOGLU: Look, I want to see the grandchild in my arm, okay?



JENNY BROCKIE: Burak, how is he trying to convince you?



HUSNU HALILOGLU: Doesn't matter.



BURAK HALILOGLU: Well that's the pressure, they want grandchildren and they don't care who it is with, but I also know that there are going to be other complications if I were to bring home someone who is from a different background, for instance, because traditionally in Turkish culture, particularly those whose parents were raised in rural communities, they want to get to meet the family first. If the family is trustworthy and of, you know, if they're virtuous and everything, then they'll approve of the couple getting married. As far as young Turkish couples getting married is concerned, it's not so about much about the couple themselves, it's about the two families coming together and uniting.



JENNY BROCKIE: And you want to make your own choice?



BURAK HALILOGLU: Yes.



JENNY BROCKIE: Whatever that might be?



BURAK HALILOGLU: Yes.



JENNY BROCKIE: Husnu, do you have someone in mind?



HUSNU HALILOGLU: I've got a couple of times, just tell them, like whispering, and he reject. Since then I'm not saying anything.



JENNY BROCKIE: Burak, how do you feel about your parents being cousins?



BURAK HALILOGLU: I think it's a bit weird but I don't - I don't - what I think is weird is the fact that my mum was raised here. She's had options to meet people here. Whereas my father, considering that he grew up in a rural village, that makes a lot more sense because they do have a more limited pool of people that they can communicate with. So I can understand from his side of things; I don't necessarily understand why my mother would settle.



JENNY BROCKIE: I don't think he's going to do it?



HUSNU HALILOGLU: There is no pressure there.



JENNY BROCKIE: Elisabeth, you're Lebanese, you were married to your first cousin once removed for twenty years. Why did you marry a cousin and not someone else?



ELISABETH HADDAD HOLGATE: Again, they're talking, they're Muslim from Iraq and Turkey, it's common in Lebanon, in the Middle East, not just Muslim, Christian and Muslim they marry cousins and it's very common. It's not like these days my daughter had the choices here to date and see many boys before she got married and she got married at age of 32 and I was married at 17. Because that's where you grow up with your cousins and that's the only boys you see so you didn't have that, you fall in love with the boys around you.



JENNY BROCKIE: So how did you feel about it at the time? It was quite normal?



ELISABETH HADDAD HOLGATE: It was quite normal, at the time I was 17 and I was in love and you know, you love the person you see and he was good looking and my dad saw his arm around me, that's it's, you're getting married. I don't have girls doing this, you're not going any further, sit, we're getting the priest - you are getting married.



JENNY BROCKIE: So how do you kids who are now grown up feel about the fact that their parents were cousins?



ELISABETH HADDAD HOLGATE: Oh, so embarrassed.



JENNY BROCKIE: Really?



ELISABETH HADDAD HOLGATE: They still to now, they won't tell anyone because I kept, it's my maiden name.



JENNY BROCKIE: Oh, you're on national television?



ELISABETH HADDAD HOLGATE: Had to get over it, grow up, I'm over 50. When they get to that age I think they get over it. It's just, yeah, they feel still embarrassed. They tell people just because it's a Haddad family, it's a common surname and they said it just happened my mum and dad have the same surname. They wouldn't say we're related, they so embarrassed about it.



JENNY BROCKIE: Who decides who you marry, you or your family in your culture? Did you have choices? Was it an option for you to have a boyfriend or anything like that before you married your cousin?



BATOOL ZALZALA: No, because our religion we are not allowed to make relation and even if someone have relations with me in secret and it's not common. So the girl always think when she will make a relation with someone, so this one will get married, not only legal marriage, not only relation like this and sort of hard.



JENNY BROCKIE: Kirstie and Lyle, what's it like hearing about how common it is in other cultures for cousins to get married compared to yours?



KIRSTIE FISHER: I had a strong suspicion or understanding that in other cultures it was very common and legal and everything, but in Australia I wasn't sure.



JENNY BROCKIE: Melanie, what's it like for you hearing about how common it is in other cultures?



MELANIE FISHER: I think I was more informed that it was quite common with other cultures but not so much with ours.



JENNY BROCKIE: So you don't recoil in the same way when you hear cultures practising?



MELANIE FISHER: No, because it's quite common in other cultures and I knew that already, but with our culture I didn't think it was very common at all.



JENNY BROCKIE: Alan, you've looked at cousin relationships globally, why is marrying a cousin accepted practice in many other countries other than here?



PROFESSOR ALAN BITTLES, MURDOCH UNIVERSITY: I think it's both cultural and religious, within individual religions you get quite a schism. So within Christianity, to marry a cousin or first cousin within the Roman Catholic Church you've got to get diocesan dispensation. Within the Orthodox Church, it would be very difficult to get permission to marry a first cousin. Within the Protestant denominations there's not a problem and that happened at the time of the Reformation, Luther came along and said look, these rules about cousin marriage that the church has adopted, there's nothing about it in the bible, in the book of Leviticus, and really it's a money making scheme being organised by the church and it should be stopped.

Within Islam, in fact there are Islamic groups where a cousin marriage will not be countenanced and they will be the European Islamic countries like Bosnia, like Kosovo, like Albania. In Buddhism the Tibetans avoid cousin marriage absolutely, whereas Buddhists in Sri Lanka, South India, south East Asia, cousin marriage is very common. So it's a total mix and it's very hard to know how you can put your finger on just one reason why people actually decide that cousin marriages are agreeable or not agreeable and whether you should proceed with cousin marriage.

But I think the important thing with western culture as well is that until the middle of the 19th century, first cousin marriage was regarded as being terribly romantic and all the English novelists were writing about "dearest cousin" and this was a wonderful idea. And then within a ten, twenty year period, the whole mood just changed.



JENNY BROCKIE: Why?



PROFESSOR ALAN BITTLES: In the middle of the 19th century. I think because at that point in time people started asking questions about possible medical and health problems that would come up. In particular about deaf mutism that was the first thing they came up and people started noticing that where cousins were marrying they seemed to have a high rate of children with deaf mutism.



JENNY BROCKIE: Abdullah, you have a Lebanese background, your parents are first cousins, how do you feel about that, about them being first cousins?



ABDULLAH KARIM: I'm against it.



JENNY BROCKIE: Why?



ABDULLAH KARIM: Um, the blood doesn't mix, like it's too close, like they're family, it's too close in the family because the risks are that the baby, like if you marry cousins, the baby could come out, um, pretty much like, maybe not normal. I have severe scoliosis of the spine, I have limb deficiency as well so I'm missing arms and I'm missing knees, so got no kneecaps.



JENNY BROCKIE: And do you associate that with your parents being cousins or not? Do you know whether it's got anything to do with that?



ABDULLAH KARIM: I reckon like probably about 85 percent, like it's probably from cousin related why I have a disability.



JENNY BROCKIE: Has there been any testing, have you had any testing done or have they had any testing done to establish that at all?



ABDULLAH KARIM: No, testing has been done at all, no testing has been done.



JENNY BROCKIE: And why did you so strongly believe it's associated with them being cousins?



ABDULLAH KARIM: Um, yeah like I said, it's - friends you know, they ask what my disability is as well and out of the blue I'll say oh, it could be the reason because my mum and dad are cousins. And they turn around and say they're cousins? Like maybe that could be the reason.



JENNY BROCKIE: Do you have siblings?



ABDULLAH KARIM: Yeah, I've got two brothers living with me at home and I've got brothers and sisters that come from Samoa, my dad married a Samoan lady and he got kids from her, but they're perfectly fine. I'm the only one with a disability in the family, so, yeah.



ASSOCIATE PROFESSOR EDWIN KIRK, SYDNEY CHILDREN’S HPOSPITAL: Can I get that question? Have you talked to your parents and do they believe that because they're cousins - that's why you have the disability? Like what do they think?



ABDULLAH KARIM: Um, mum, mum's not against this cousin relationship, she doesn't think that it's been caused from them being cousins. She just, she believes that it's all God's work, you know, why I'm disabled. Like God's creation.



JENNY BROCKIE: Kris, I wanted to ask you about this because you've worked as a genetic counsellor and an educator, what kind of genetic testing is available for someone like Abdullah and his family if they wanted to do it? Would there be a way of establishing whether, you know, disabilities were connected with being cousins?



PROFESSOR KRIS BARLOW-STEWART, UNIVERSITY OF SYDNEY: There could be many reasons that would have caused Abdullah's problems and it would be really important to first of all get a very clear diagnosis, if that's possible and it's not always possible, about what his problems are, and it may be that it is due to the sharing of faulty genes but that is not an absolute certainty in any way. And I'll just ask my colleague Edwin Kirk to follow up on that.



ASSOCIATE PROFESSOR EDWIN KIRK: Well I guess it would involve a careful clinical examination, review of whatever investigations may have been done in the past when you were a child and there might be a case for certainly some x-rays and there might be a case for some specific genetic testing and this might reveal a particular genetic diagnosis. Now there are literally thousands of genetic disorders that have been described and the genetic basis of many of them is known and some are what's called auto-zone recessive and that's the form where the sharing of genes is important.



JENNY BROCKIE: Have you talked to your parents about this, about how you feel about this?



ABDULLAH KARIM: Um, not really because mum gets emotional about it so I kind of step back a bit.



JENNY BROCKIE: And your dad doesn't live with your mum?



ABDULLAH KARIM: No, he doesn't live with my mum, no. He's not worried about me, about mum, he's not worried about us, he's living his own life, we're living our life so we're happy.



JENNY BROCKIE: If we can talk more generally about risk, I'd just like to broaden this out a little bit. How often are disabilities associated with the children of cousins?



PROFESSOR KRIS BARLOW-STEWART: So everybody has around a 2 to 3 percent chance of having a child with a problem, any type of problem, and we often don't know the reason for that. First cousins have then about a 4 to 6 percent, in other words it's double that small risk, so it is an increased risk because they are sharing the same faulty genes. But it is nowhere near the perception that I think many people have, that it is a really high risk, it's still small.



JENNY BROCKIE: Smaller I would imagine than a lot of other risks that people take having children when they have genetic issues in families?



PROFESSOR KRIS BARLOW-STEWART: Yes, and in fact if we know that a couple are sharing the same faulty gene, there is a 25 percent chance that they will have a child with a problem due to inheriting both copies of that faulty gene. So that's 25 percent compared to say 4 to 6 percent - Is much, much higher. But I have had future mothers in law ringing me in absolute distress because their son is planning to marry their cousin and convinced that all of her grandchildren are going to be, in her words, abnormal, or with a disability. And of course you've got to work very hard to change that perception.



JENNY BROCKIE: Is that the perception? I mean I'm just interested in people who've come along tonight and didn't know. Yes.



SARAH DAMOUNY: My parents are first cousins and within the family we have a few more couples that have married into the family. None of the children, thank God, have come out with any disabilities but my auntie, my mum's mum, she married someone completely out of the family and has two children with disabilities so it is God's will, it's whatever he wants. It doesn't necessarily have to do with cousins, you know, anyone could come out with a disability - that is my view.



JENNY BROCKIE: Okay, what about other people's perceptions, Burak?



BURAK HALILOGLU: I have two older sister, they're twins, one passed away and they were born about three months….



HUSNU HALILOGLU: 15 weeks premature.



BURAK HALILOGLU: And when I tell friends or just, you know, acquaintances that my parents are first cousins, the first question - sorry, when I mention the fact that one of my sisters is disabled and the other one had passed away, the first question that they ask is whether or not they're related to one another and I say that they do and they seem to think that there is some correlation between a child being born with a disability and whether the parents are related or not.



JENNY BROCKIE: Kirstie and Lyle, you have two children?



KIRSTIE FISHER: Three.



LYLE FISHER: Four.



KIRSTIE: We have three children together but four children, yes.



JENNY BROCKIE: Three children together?



KIRSTIE FISHER: Yes.



JENNY BROCKIE: Did you factor any of this in?



LYLE FISHER: My mum, like when she did all the research and that she had checked on the genetic risks as well and basically said the same thing. It's only a minute increased risk. There's …



JENNY BROCKIE: Your mum did everything?



LYLE FISHER: Oh yes, she'd go, she'd go to town on it, and yeah, basically, we didn't seem too concerned because there were still going to be enough of a risk that any kids we have could come out with any sort of problems that had absolutely nothing to do with our blood line and I mean…



JENNY BROCKIE: And the reason we're talking about this so much is actually I think to try and get out on the table what the facts are, as opposed to what a lot of the perceptions are.



LYLE FISHER: Yeah.



JENNY BROCKIE: But I wonder whether it leaves you in the situation you found yourself in, where you did have another child together that didn't survive. Did you think about it? Did you think about it perhaps being a factor? I mean a situation Abdullah's in where he's wondering what is going on?



LYLE FISHER: Yeah, it did pop into our heads afterwards, obviously being distraught as we were.



KIRSTIE FISHER: Like I thought about it but…



LYLE FISHER: But we had them do an autopsy on the foetus, on Danika, and determined a problem and what happened to her is a one in ten chance happening, basically it happens to one in ten pregnancies basically with anybody, whether they're related or not related, it's a very common thing.



JENNY BROCKIE: Greg, you're an obstetrician working at a hospital in Western Sydney, how often do you see women who are in cousin relationships in your practice?



DR GREG JENKINS, AUBURN HOSPITAL: About 20 percent of the women that birth at our hospital are in first cousin relationships and that number has remained fairly constant over the past 15 years or so.



JENNY BROCKIE: And what sort of cultural backgrounds?



DR GREG JENKINS: A range of cultural grounds. Initially we did some research in the late 1990's and the majority of the women at that time were from Lebanese backgrounds, but the cultural diversity of our local community has expanded substantially during that time. Interesting, to pick up on something that was raised a little earlier, interestingly in our first piece of the research, all of the women in consanguineous relationships were born overseas. In our follow-up piece of research several years later, 60 percent of the women in consanguineous relationships birthing in our hospital were born in Australia.



JENNY BROCKIE: You were to explain what consanguineous means.



DR GREG JENKINS: So first cousin relationships.



JENNY BROCKIE: What patterns do you see then?



DR GREG JENKINS: It's not just about babies born with a birth abnormality and we acknowledge that there is about a 3 percent increase in risk, but there is an increase in risk of babies dying shortly after birth. There's an increased risk of still birth during pregnancy.



JENNY BROCKIE: How high is that risk?



DR GREG JENKINS: Well in our study it was significantly higher. It's hard to put a precise number on because it's a relatively uncommon event. But in our study it was much more common in first cousin relationships than in couples that weren't in first cousin relationships and I guess touching on the 3 percent figure, whilst the majority of couples can expect a healthy outcome, there's lots of other conditions that occur with a much lower frequency than 3 percent that we get quite excited about during pregnancy.

We certainly educate and talk about down syndrome testing and screening for couples that have a much lower risk of down syndrome than 3 percent and we advocate or educate in regard to a number of other healthy interventions during pregnancy to reduce the risk of conditions that occur with much lower frequencies than that.



JENNY BROCKIE: So what do you think about cousins marrying?



DR GREG JENKINS: Well, we see babies with a range of rare and unusual genetic disorders. We do see an increased risk in still birth in late pregnancy and we do see a risk of babies being born unexpectedly at very early gestations.



JENNY BROCKIE: Ziad and Batool, you're both doctors, did you factor in a risk?



ZIAD AL-RUBAIE: No.



JENNY BROCKIE: Of disability when you had your son Tariq?



ZIAD AL-RUBAIE: No, because in Iraq there is not test for genetic, only for thalassaemia I think, there is no test for the congenital abnormality or genetic test to do before the marriages. For me I'm not worried because she's a product of first, a product of first degree cousin marriage, also her father and mother also cousins and also in our relatives and friends, I can remember around 20 or 19 marriages, they are cousin marriages and most…



JENNY BROCKIE: Are there disabilities in that extended family? Have there been…



ZIAD AL-RUBAIE: Look, we have only two families, one of them they have two children, both of them, they are mentally retarded and the other one also cerebral palsy. I don't know because this is maybe related or not because I studied in Jordan in the public health and I involved in studies there in consanguineous marriages, we found some relation between congenital abnormalities and still birth with first degree or cousin marriages.



JENNY BROCKIE: How definitive can you be about this? Edwin, I mean how clearly can you prove a link?



ASSOCIATE PROFESSOR EDWIN KIRK: It really depends on the situation. So there are many disorders where we know the specific genetic cause and if you can make a definite diagnosis, and then if you know the gene for the disorder and increasingly we know the genes for many, many disorders, you may be able to do a test which will identify whether the same change gene has come from each parent.



JENNY BROCKIE: You've got to know what you're looking for though?



ASSOCIATE PROFESSOR EDWIN KIRK: You've got to know what you're looking for, you've got to have a test that will give you a specific answer, and so it's often possible to say with confidence yes, this is related to the cousin relationship, or no, it is not.



JENNY BROCKIE: To what extent do you think this is driving disapproval of cousins marrying in the west in a way that there isn't disapproval in some other countries?



PROFESSOR ALAN BITTLES: I'm intrigued by the data coming from Westmead about still births because we did a study on 46 different global studies on still birth and came up with an additional 0.5 percent. So it may well than worthwhile finding out what exceptional circumstances there may well be in Westmead and this may be a starting point for this type of study. So you've got to get everything in context.

It's very important as well, rather than just concentrating on the adverse effects, the adverse genetic effects of consanguineous marriage, to take into consideration why people want to marry their cousins. The points you were raising much earlier and looking at the entire picture, the socio economic benefits, the benefits in terms of family solidarity versus the genuine medical problems that exist. And of course that will change according to the socio economic status and degree of a culturation of a particular migrant community.



JENNY BROCKIE: But what do you think drives the kind of disapproval that Lyle and Kirstie have experienced?



PROFESSOR ALAN BITTLES: Well western viewpoint, I think there are two factors. The first one is people think you're going to marry your cousin oh, that tacky, that's really pretty tacky.



JENNY BROCKIE: But why to people think it's tacky when other people in other cultures don't? In facts the opposite, when other cultures think it's a really good idea?



PROFESSOR ALAN BITTLES: To some extent it's going back to the early part of the 20th century and the over emphasis on the eugenics movement of cousin marriage being very harmful without any real evidence being produced.



JENNY BROCKIE: Kirstie, what's the worst thing anyone's ever said to you?



KIRSTIE FISHER: I had a friend tell me that my children would grow two heads and that we should move to Tasmania.



JENNY BROCKIE: Wow?



KIRSTIE FISHER: Yeah.



JENNY BROCKIE: Okay, Sandy, you've been in a seven year relationship with your cousin. What sort of things do people say to you, your daughter was born premature?



SANDY COPPINGER: Yes.



JENNY BROCKIE: What sort of things do people say to you?



SANDY COPPINGER: They ask if that's why for one thing but I've got a bicornuate uterus.



JENNY BROCKIE: You've got a what, sorry?



SANDY COPPINGER: A bicornuate uterus.



JENNY BROCKIE: What does that mean?



SANDY COPPINGER: This gentleman as probably best to explain it.



JENNY BROCKIE: We'll have an obstetrician sitting right beside you.



DR GREG JENKINS: Sandy has sort of a double uterus, so her uterus has two halves and it's a well recognised complication of having a bicornuate uterus that there is a high risk of pre term delivery.



JENNY BROCKIE: Okay so a perfectly, you know, normal explanation for why that would be the case?



DR GREG JENKINS: Yes



JENNY BROCKIE: But people make that assumption?



SANDY COPPINGER: All the time.



JENNY BROCKIE: Do you get other comments from people? What sort of reactions do you get?



SANDY COPPINGER: No, I don't tell a lot of people really. So yeah.



JENNY BROCKIE: And you're on national television too, you are aware of this?



SANDY COPPINGER: Yeah.



JENNY BROCKIE: Why did you want to come on and talk about it?



SANDY COPPINGER: Because for me it's normal, I mean we're normal, you know, we're not weird, yeah, yeah, we're just…



JENNY BROCKIE: Greg, when we talk about testing, do the women that you see want to be tested?



DR GREG JENKINS: Some do but a lot don't. A lot take the view that the child is a gift and whatever gift they're presented with will be their child.



JENNY BROCKIE: Would you want to know - would you want to have tests or not? No?



ZIAD AL-RUBAIE: No.



JENNY BROCKIE: And what about you two?



KIRSTIE FISHER: No. Personally I wouldn't because…



LYLE FISHER: No.



JENNY BROCKIE: Why?



LYLE FISHER: Any child you have is still your child, regardless of their mental or physical state. So it's, it's one of those things, you don't need to know.




JENNY BROCKIE: Denise, how do you feel about your daughter Sandy being in a relationship with your nephew?



DENISE LEWIS: Doesn't bother me at all, I love Sandy regardless.



JENNY BROCKIE: Has it affected your relationship with your sister, because I'm interested in the flow on effects of this?



DENISE LEWIS: My sister and I told them so long as, if you fight you don't drag us into it, we don't care.



JENNY BROCKIE: See this is what I'm interested in, what happens to the broader family?



DENISE LEWIS: They have had disagreements and you know, Sandy obviously might call me and say mum, blah, blah and whinge. In most cases her mother-in-law, or my sister, supports her over her son but other than that, I think we don't discuss their inside relationship, we leave it as it is.



JENNY BROCKIE: Do you want to say something about this Elisabeth? About the broader implications of cousins getting married?



ELISABETH HADDAD HOLGATE: Yes, I was married to my ex for probably twenty years before we divorced and because it's family it affected us really bad. Still till today I have about probably ten cousins I don't talk to here, they don't talk to me because I divorced my ex and his family. My parents in the beginning too stood by his side, it's the family, you can't do this to family. You know, like you can't divorce him.



JENNY BROCKIE: Okay, are there difficulties with family in terms of being so close?



KIRSTIE FISHER: For us, no because we've got such a big family, like broader family that we don't speak to most of them.



JENNY BROCKIE: Okay, Hythem and Leena, you're first cousins you married, how common is cousin marriage in your extended family?



HYTHEM DAMOUNY: Our grandfathers are twins.



JENNY BROCKIE: Your grandfathers are twins?



HYTHEM DAMOUNY: Are twins, yeah, and it's in the family, like maybe seven couples you know, they married cousins.



JENNY BROCKIE: Can you start explaining those people?



HYTHEM DAMOUNY: Like my mum and my dad, you know, they're cousins. My auntie and my uncle are cousins.



JENNY BROCKIE: We've got it up here.



HYTHEM DAMOUNY: Yeah.



JENNY BROCKIE: We also have it on our website so everyone can study it for a long time. But it is complicated, your family?



HYTHEM DAMOUNY: But in Islam you know, prophet Mohammed said a long time ago, you know, thousand years ago rabunika, means marriage is better to marriage from strangers. It's preferable to marry from strangers so it's a culture, it's got nothing to do with religion.



JENNY BROCKIE: But you didn't do this?



HYTHEM DAMOUNY: But my son, you know, he got minor thalassaemia and I think it's very popular there the Middle East, thalassaemia, it comes minor and major. They said because of the cousins marriage but I'm not sure.



JENNY BROCKIE: You have two adult children, what do you want for them?



HYTHEM DAMOUNY: I have Sarah and Swali supposed to be come but he's busy, you know, he couldn't make it, sorry but they put another Swali next to us.



JENNY BROCKIE: Okay, what do you want for your children?



HYTHEM DAMOUNY: I want happy life for them no matter, look as long as they marry somebody to, you know, to make Sarah happy and to make Swali happy, you know?



JENNY BROCKIE: If they wanted to marry a cousin?



HYTHEM DAMOUNY: I don't care. It's not I don't care but…



JENNY BROCKIE: You prefer not, Leena, why?



LEENA DAMOUNY: Because my family and my mother and my father is cousins and first the fathers are twins. I don't want my children to be in the same cousins again.



JENNY BROCKIE: Why. What are you worried about?



LEENA DAMOUNY: Because my mother she got also boys not normal.



HYTHEM DAMOUNY: But they died.



JENNY BROCKIE: So you had some disability in the family?



LEENA DAMOUNY: Yes, disability, but they died after three years, they don't live more. That's why I don't want my children to be suffer from the same problem because it's too much cousins, first cousins and second cousins, it's not good, I want relatives.



JENNY BROCKIE: What do you think Sarah?



SARAH DAMOUNY: Personally I wouldn't marry any of my cousins, I don't particularly find any of them attractive, sorry.



JENNY BROCKIE: A very important thing, completely neglected.



SARAH DAMOUNY: But if…



JENNY BROCKIE: You're on national television too?



SARAH DAMOUNY: I know. If there was someone I was attracted to, like I might, I don't find anything wrong with it. I find it completely normal, but I probably wouldn't, you know, with the circumstances I wouldn't.



JENNY BROCKIE: Kris, does the risk increase if there are generation, if there's generation upon generation of cousins marrying?



PROFESSOR KRIS BARLOW-STEWART: The answer is yes, it's difficult to quantify it in a general way because it's an individual, depending on whether the parents, the grandparents were first cousins, because what it means is that you are, because you've got generations of cousins, you are sharing the same faulty genes that are being passed down. So you've got a greater chance of sharing the same faulty genes. So we can give you an overall risk for something but we can't tell you what it is, unless we can identify the faulty gene that's in the family.



JENNY BROCKIE: So you've got to know what you're looking for?



PROFESSOR KRIS BARLOW-STEWART: Yes.



JENNY BROCKIE: Okay, Alan, how clear is the evidence on risk when multiple generations of families marry cousins?



PROFESSOR ALAN BITTLES: It's not totally clear because the cousins we've done are so called meta analysis putting data together from 64 different studies. I couldn't see much of an increase in the risk in a country like Pakistani where people have been marrying cousins from generation to generation, versus a country like Japan, versus France or Norway. So it's something that theoretically you should expect and I think we are seeing it in terms of looking at the genome, looking at the DNA. But in actual risk terms it's not quite so easy to prove this.



JENNY BROCKIE: Are there new areas of research in all of this? What are the thing that are being researched at the moment Edwin?



ASSOCIATE PROFESSOR EDWIN KIRK: Well, so things are moving very fast in genetics. The technology is changing very rapidly and what I think is going to happen is that it's going to become practical to look at very large numbers of genes, in theory all of them, at quite an affordable twice and also to be able to interpret the information within a fairly short time. And then you might be able to offer a couple, if they wanted it, if it was going to be useful to them and that's a really important point, the option of a test that would tell them if there was a risk to them in being together as a cousin couple.



JENNY BROCKIE: How would you two react if one of your kids wanted to marry a cousin?



KIRSTIE FISHER: As long as they're happy, my mum asked me the same question which I told her about Lyle and about my daughter marrying her cousin and I said well as long as she's happy, I don't have a problem with it.



JENNY BROCKIE: Lyle?



LYLE FISHER: I'm the same, I don't have an issue with it. Basically yeah, if she's happy, then that's the main thing.



JENNY BROCKIE: Sandy, what about you?



SANDY COPPINGER: No, and it's double, so yeah.



JENNY BROCKIE: So you wouldn't want to increase the risk?



SANDY COPPINGER: No.



JENNY BROCKIE: So you wouldn't approval of one of your kids doing what you've done?



SANDY COPPINGER: No.



JENNY BROCKIE: That's interesting. Elisabeth, how would you feel about your kids marrying a cousin?



ELISABETH HADDAD HOLGATE: I wouldn't approve on it and I wouldn't, but still I don't see it's wrong. Now it's one thing I learnt coming to Australia, there is no such thing wrong or right, it's your perception of things in life. Whatever it may sound right for the western society it's wrong in the Middle East, so which one is wrong and right? How do you weigh wrong or right? Whatever feels right for you as long as you're doing something in right that's not harming anyone and you're happy within yourself it's not wrong, that's how I see it.



JENNY BROCKIE: Tariq, do you think mum and dad have a plan for to you marry maybe a cousin in the future?



TARIQ AL-RUBAIE: Yeah, I believe that my mum and dad always do the right thing for me so it will be okay.



JENNY BROCKIE: It will be okay, do you think they do have a plan?



TARIQ AL-RUBAIE: Possible.



JENNY BROCKIE: Okay, do you have a plan?



ZIAD AL-RUBAIE: I have a plan.



JENNY BROCKIE: What is your plan?



ZIAD AL-RUBAIE: Look, nowadays I will keep everything, the decision up to him. But still I prefer I like to marry one of his…



JENNY BROCKIE: Someone in the family?



ZIAD AL-RUBAIE: Yes.



JENNY BROCKIE: So do you have cousins in mind?



ZIAD AL-RUBAIE: Yes.



JENNY BROCKIE: Your brother has a daughter?



ZIAD AL-RUBAIE: I have my brother, he's, really he's living in Belgium and he had three daughters, all of them they are, so he can…



BATOOL ZALZALA: He says, yes, he said he has the choice. He has the choice which one of the three.



JENNY BROCKIE: That was my next question, right? Okay, I'm getting to you in a minute. Alright, so three daughters, how old are they now?



ZIAD AL-RUBAIE: One of them is six months younger than him; the other is two years younger and the third one is, I think, five years or five or six years younger.



JENNY BROCKIE: And do you have your eye on one in particular?



ZIAD AL-RUBAIE: This depends on what …



BATOOL ZALZALA: His choice, you see.



JENNY BROCKIE: At this stage he has only a choice of three. So Batool, what do you think about this, is this your plan too?



BATOOL ZALZALA: Yes, sure, it's his choice. Not all three, no, I not know, no, this is, we are, it's free for him and he has a personality and his choice. This is up to him, but we prefer the cousin, yes.



JENNY BROCKIE: What if he wants to marry someone else?



BATOOL ZALZALA: Yes.



ZIAD AL-RUBAIE: I have no plan.



JENNY BROCKIE: You haven't made a plan for that?



ZIAD AL-RUBAIE: No, no, I have no plan. Absolutely to marry someone else?



JENNY BROCKIE: Yes, if Tariq wants to marry someone else, not you. I have no plan for you to marry anyone but Batool.



BATOOL ZALZALA: Very good, you tell him….



ZIAD AL-RUBAIE: Because it's not allowed to marry, this is not strange for me the question.



JENNY BROCKIE: What if Tariq wanted to marry someone else?



ZIAD AL-RUBAIE: This is the decision up to him. I'm happy to marry the one who in love with her and to build a future and good life and I appreciate everything he will do. But for me still I have, I prefer to marry his cousin.



JENNY BROCKIE: Okay, thank you very much for joining us tonight. All of you, thank you so much and thanks everybody else for your stories and we do have wrap it up here now but you can keep talking on-line. Go to our website, Twitter or Insight's Facebook page.