 So I know many, but not all of me here. I'm Sheila Wildman. I'm Associate Director of the Health Law Institute. And it's my honor to introduce today's speaker in our Health Law and Policy Seminar series, Professor Rivka Karni. Professor Karni is president of Ben-Gurion University, of the NetJet in Israel, a physician that she's held since 2006. Prior to taking up that post, she was Dean of the Faculty of Health Sciences at Ben-Gurion and Director of the Genetics Institute at the Soroka University Medical Center. I had that Professor Karni is the first woman to have been Dean of a medical school in Israel and the first woman to have been a university president in that country. Last year, she was chair of the country's Committee of University head. Apart from her impressive career in university administration, Professor Karni has made significant scientific contributions in the area of medical genetics. A graduate of the Hadasa Medical School of the Hebrew University of Jerusalem, she completed a residency in pediatrics, a fellowship in neonatology, and then a further fellowship in medical genetics at Boston Children's Hospital and Harvard University Medical School. Professor Karni is the incumbent of the Kregner Foundation Chair in Pediatric Genetics at Ben-Gurion. She's offered over 120 publications in medical genetics, and along with her team has identified numerous new genes and mutations, including one which has been named Karni Syndrome. Her research has focused mainly on clinical manifestations and molecular basis of genetic diseases in the arithmetric population of the negate. Professor Karni's many accomplishments will be formally recognized on Friday when this university will be awarding her an honorary degree. We're lucky that she could take the time to speak with us about the ethical and social dimensions of her work. The rough plan is for Professor Karni to speak until roughly one o'clock, but possibly later than that, followed by questions if we have time, we're going to have to wrap up by 1.20 to make way for an incoming class. So with that, over to you, Professor Karni. Well, thank you very much, Eva, for this kind introduction. And good day. It's not afternoon yet, right? So everybody, you're quite dispersed here. So if you feel comfortable like that, I need to go. And if any, every now and then, I will fix one group, bear with me. So it is really wonderful to be here. I just arrived at 1 o'clock, 1 AM in the morning. So if I have any kind of language barriers, lapses, whatever, I'm expecting new help. This is my first time, as I say, to Harry Fuchs. And I'm very thrilled to be here. And thank you for taking the time to come and hear my story about my research with the Benin community in Israel. Obviously, as a university president, I don't get to do too much of it lately. My last PhD student graduated about three years ago, when he fortunately managed to find a gene for the syndrome that I first clinically delineated 20 or 20 more years ago. So for years, we had the syndrome. We knew all the pathophysiology of this Karni syndrome. And only three years ago, we have identified the mutation that is causing this very unfortunate devastating disease. Just to show you that with all due respect to the wonderful technologies that we are encountering these days in genetics, in medicine in general, and genetics in particular, it might take some years and times before you actually get to the results that you are looking for mainly understand what is the molecular basis of those genetic diseases. So I came to the Negev, which is the southern part of Israel. As you can see here, this is the Negev region of Israel, the southern part of Israel, which is about two-thirds of Israel's enemies, only less than 10% of the population. It's vastly populated. It has a community of about 200,000 Bedouin, Muslim Arabs, residing in the Negev. We'll get there in a moment. Beresheva is the capital of the Negev. The Ben-Gurion University is located here. The main campus is in Beresheva. This is, I would say, a very regular picture for the Negev at this time of the year. When it's about to rain, it almost doesn't rain there. It is an arid zone or a dry land. But when it does rain, we have a lot of floods going on all over the place. Bedouin University is, in a way, kind of an oasis down there. It is located, as I said, in Beresheva. And it was created about 44 years ago with a governmental mandate to spearhead the development of the Negev. So the idea was to bring an institution of higher education to this part of the country in order to attract scientists, in order to attract scholars, and by that, to develop all kinds of academic research projects that will cater, will take care of the needs of a dry land to be sustainable in order for people to live there. But in that regard, the university has done a lot. Obviously, I do not have the time to dwell on all the fields and the fields that the university is involved in developing the region in general. And I will emphasize on my own research within the medical school. My research there, I came to the Negev right after I graduated from medical school in Jerusalem. And I came with a very ideological drive to actually help promoting the health system, especially via the community clinics in the Negev. And I was also interested in genetics. I was interested in genetics since I was 14 years old. And I pursued this interest very vigorously throughout medical school and later on. And I realized very, very quickly that one of the major health issues of the Negev was genetic disease birth defects among Bedouins. You know, in all other places, you find all other kinds of health challenges, either infectious disease or prematurity. But in that traditional community, the major health problem was birth defects and genetic disease. Now, what is the characterization of the Bedouin community? That, by the way, dwells in the Negev, but also exists in Jordan. In fact, a large degree of similarity between the Negev Bedouins and the Jordanian Bedouins emerged from the fact that they have common founders that actually came hundreds of years ago from the Arab Peninsula. Some of them came to the Negev, some of them to Jordan. And it is a highly traditional religious, but not that religious, becoming more extremist or more extremely religious in recent years. But throughout the years, it was more traditional rather than religious. So as I said, about 200,000, about 10% of the Arab population in Israel in general. This is a tribal community with almost 80 different tribes. And they have three very distinct social groups. One is the Lent Owners, the one that came the very old, the first to come to the Negev hundreds and hundreds of years ago. The peasants, the one that came later on mostly from Egypt. And the ex-slaves, the black Bedouins that came from Sudan were brought by shakes, Lent Owners as their slaves, and eventually later on developed their own community. And those three social groups are totally separated. I mean, they cannot marry within each other. In fact, they cannot even marry between tribes of the same social group, needless to say, between among groups. There are few founders in the sense that when they originally came, there weren't many, many people coming in. There were a couple of hundreds of founders that came there. And in a minute, you will understand why it is important in terms of genetics, in terms of medicine. Something which is very highly characteristic of the community is high rate of consanguinity. And the definition of consanguinity is marrying within the family. In the Bedouin community, as you will see in a moment, about 60% of all marriages are among first cousins. There are more 10% or 15% marrying within the family in a bit, in a less or more far away, but still within the family. Second cousins, third cousins. But first cousins, and sometimes double cousins, meaning sharing grandparents on both sides is something which is not uncommon in the Bedouin community. And by the way, this is the highest rate in all the Mediterranean, in all the far, in the Mediterranean area. There are a lot of consanguinity in other communities in the Middle East as well. But within the Bedouin community, it is the highest. Now there is another custom in the Bedouin community, which is polygamous marriage. Polygamy is not legal in Israel, but it is very often practiced in the Bedouin community. We don't have exact numbers, but the general impression is about fourth of the marriage in general are polygamous, having more than one wife, sometimes more than three wives. It means that the families are big. It means that there are many children there. And again, it has a very important effect on birth defects and genetic diseases. As I said, it is legal in Israel, but still the authorities in Israel just put a blind eye towards their trying not to extremely involved in their own traditional way of life. And lastly, there is a very high birth rate among the Bedouins. There are about 20% of the whole population in the Negev and more than 50% in the annual births in that Soroka Medical Center that was just mentioned before, which is the only hospital in the Negev, more than 50% of the births. And it is not unusual to see in an average Bedouin family about six, they say in terms of 6.7, not that we have a seventh of a child, but on the average, 6.7 children per couple. Just imagine in a polygamous marriage, you can get as high as 20 kids per family in one household. As I told you before, this is one of the early studies that we did with close to 1,000 people here. It's only part of that study where we found that the vast majority of the Bedouin population is actually married within the family. These are some scenery pictures of what you can see in that community, which was nomadic, or at least semi-nomadic, for many, many years and up until about 50 years ago. About 50 years ago, it was mainly around the nation build in this neighborhood. Israel was declared in 1948, Jordan in 47, Lebanon. At that point, they were more and more pushed to live in defined areas. But still, even in more official settlements, you can see a very modern house. But nowadays, there are more and more of them. But right next to it, you see the sheds, you see the tents, and the husbandry, camels, and all kinds of other animals that they grow. So some of them are of a very low-paid kind of blue color, either professional or not professional blue color workers. But unemployment is very, very high in this community. It can get as high as 24, 20, or 30%. Some more authentic pictures still. About 50% of the Bedouins live in former neighborhoods that the government has built for them. But almost 50% are still scattered in the Negev, in shanty towns, in encampments, in tents. And this is what you can find very often. I don't know whether you can see a baby lying over here, right there and then by the tent in the desert. So the ill effect of consanguinity is actually bringing about genetic diseases, the kind of, that we call recessive diseases. Are there any medical people around here in this room? OK. So I have to be a little bit more specific. In this kind of recessive diseases, each of the parents has to carry a mutation, which by itself, because we have two versions of the same gene, by itself, having one recessive mutation does not, should not cause any detrimental effects. So you can live normally and you don't even know in many cases that you carry a recessive disease. And it is estimated that about each and every one of us carries about six or seven mutations in various genes. However, there are in a single state, so we don't even know about it. But once there are in a double situation, then the disease is occurring, and the phenotype of the disease is being evident. So when you have the same grandparents, and if you are a product of consanguinity, your chances of having a recessive disease of parents of first cousin is 25%. And here you see a model of what's happening here. So there is a grandfather here that carries a mutation in itself, normal, no problem. Mostly the first generation that brings the mutations do not marry within the family. Then this union has two offspring, OK? Again, they marry out of the family, but they do transmit that recessive gene. Once there is a cousin marriage, and the two lines mean this kind of union, there is 25% of transferring both mutations to a child. 25% to have a genetic disease, which is quite high. So this is not unusual. This is what you see in the Bedouin community. And we've seen a lot of such family pedigree, because much of our research was basically relying on eliciting this kind of information, genetic information, genealogy for many, many tribes in the Bedouin community. And you can see here all the ingredients. I'm sorry. You can see here a case of polygamy, by the way. This is one man married to one, two, three women. And, consanguinity, first degree, first cousins married. And those are the affected children. I'm sorry you don't see this line, because here you have even many more affected kids. Because again, there are cousins of double first cousins. And this is not the most complicated family tree that we have encountered. So in the early 1990s, when the human genome project started, we have embarked on a systematic identification of genes in the Bedouin community. And the idea was actually coming from, I would say, two different considerations. One of them, as it always the case in research, a matter of interest. We were very much interested in really elucidating the molecular basis. What is going wrong with the DNA? So to bring those very, some of them, very severe devastating genetic diseases in the Bedouin community. And the idea was that the more information we get from those diseases, the more information we can provide the world with. And as a human genome project evolved, in fact, we have supplied the world literature with a lot of insights about very unusual genetic diseases, however, that had very much to do with other common diseases. So if you have a genetic disease that affects the kidneys, you can definitely look at it as maybe a way to look at more common diseases that some of them are being brought by some kind of a genetic change. So when we decided upon the first project, we have chosen one disease that was highly prevalent in three different huge, big tribes in the negative. I'm going to tell you the name, but obviously, you won't say anything to you. The Badder Beal Syndrome, three different tribes with many affected people with obesity, with progressing blindness, which is pigmentosal, with diabetes, with some kind of genetic, of congenital defects, having extra fingers, and other features which could be seen in other more common diseases. Obesity is very common. Most of the obesity are not genetically. Most of the diabetes are not genetically determined. But the idea was that once we get to the gene that causes those diseases in a recessive state, maybe those genes will be playing a role in common diseases as well. So that was the idea, first of all, to go systematically, look at the genes, find the molecular basis, having more ideas and information about those very unusual diseases. But then in the first place or the second place, provide the community with means to lower the prevalence of genetic disease. Meaning, finding a way to do genetic testing, both to carriers and also to pregnant women with children at risk of having those genetic diseases. So the idea was twofold. One scientific and the other one social. And we felt very strongly that our role is really to bring about a change in the situation in the Bedouin community, which was, if we go, if we look at infant mortality, meaning the death of children during the first year of life, you can appreciate the huge difference between the Jewish and the Bedouin population. This is going back to 2002, but in fact, we started our project in the mid-90s. I didn't bring the data before them, but they were very similar. So to begin with, we had around 18 cases per thousand of dead children during the first year of life. While in the Jewish community, you can say the number is about five and even less than that with the years. At the end of my talk, you'll see what caused actually the decrease over the years, a very dramatic decrease. But still, in 2012 still, there is a huge gap, almost threefold. And the reason for that is that when you look at the Bedouins and the causes for infant death within the Bedouin community, you can appreciate the fact that about 49% of the causes for infant death are due to birth defects or genetic disease, while it is only 23% in the Jewish population. The Jewish population, most of the cases causing infant death is prematurity. This is not the case with the Bedouins. Most, about 50% of them. So just imagine lowering this percentage will almost bring their numbers to what we see in the Jewish community. By the way, they are very high. They are relatively high to the Jewish community, but in terms of the neighborhood, numbers that you see or percentage that you see in the Middle East in general, they are still very, very low. In other countries, they are much higher. So in parallel to the bench work that we are doing for many, many years, bench work, meaning using all technologies to look into the molecular, the genetic basis of those diseases and looking for gene. And we started with very, what is perceived today, very basic, very old-fashioned, very quote unquote primitive methods, linkage analysis, which was highly prevalent in the early 90s. Now nobody is doing this or almost nobody is doing those kind of things. The technologies nowadays are very advanced, very robust, very high throughput. You can do it in a very short time very large samples what took us a year at the time, to realize to find the first location of the first gene takes now 24 or 48 hours. So we have witnessed this kind of progression and throughout the years. I don't feel that old, but still, I feel like I managed to be in three different centuries in one lifetime in that regard. So at first we were using linkage analysis, which didn't really point out the gene itself but the location of the gene. But when we did it in a certain family, when we found in a certain family location, we could readily, it was readily available for them to use it as a mean for prenatal diagnosis and carrier detection as well. So even then, even then before we had a very precise mutation which means if you have the mutation and if the infant has the double mutation, there is a 100% that we will be affected. Even then we could say but not in a definite reliability. So the reliability of the test was about 98, 97% and I'll go back to that in a moment. So the idea was in parallel to that benchmark biological research to develop a community-based program to reduce the rate of birth defects and hereditary diseases in the negative population. At first it was a program by us, the medical school, I was leading this program together with the department of epidemiology and the department of sociology and anthropology in the university. Later on in the mid-90s, but in the beginning of 2000, the Ministry of Education has undertaken that, seeing that we were very successful, undertaken this kind of disease and also adopted some other recommendation that we had and I'm going to tell you about them in a moment. So what were the objectives? They were to increase knowledge and understanding of the torrential effect of consanguinity. We didn't want to go directly attack consanguinity. We had very bad experience with doing it and the bettering community in other communities as well, but especially in the bettering community. Years before we were still very young and very naive. We had this tribe with maple syrup urine disease, some metabolic disease that actually kills babies during the first month of their life. And we were going back to the tribe and we were literally educating them on the ill effect of consanguinity and we said, and we preached, we said you have to stop it. You have to stop marrying within the family. So what happened was that the men, the males, went out of the family, looked for wives, out of the family and the women were first of all remained, I mean they didn't have enough cousins to marry, so they ended up being second and third wives. And this caused a very, very big issue in the family. We felt very bad because in a way we were undermining the very basic, very delicate fabric at least the one that was somehow present throughout the years especially between the young and the old generation and we've decided this was not the right way to go about it. But still we thought that we need to educate the public as well as the young generation about the issues involved with consanguinity and of course how to deal with it. So to promote the use of prenatal testing and early on because we realized very quickly that termination of pregnancy even for a very detrimental disease for very devastating disease is not an option unless, and this is what we realized by really working very closely with the community that if we managed to do it before the 120th day of gestation then there is an option for pregnancy termination of a very severely affected fetus because according to some, not all religious leaders but according to some of them the soul enters the body at around 120 days of gestation and up till then the fetus is not regarded human being and actually if the disease is bad enough you can consider pregnancy termination which meant that we had to really design for some kind of very early prenatal diagnosis as you know amniocentesis doesn't go before the 16th week four months so we had to plan it early on by colonic villus CVS, villus vepsi or even earlier with prenatal, with pre-implantation genetic diagnosis. Another objective was to do carrier screening. Again, healthy carriers. So to allow for the matchmaking process to incorporate genetic information. I didn't mean, I didn't mention but I should have mentioned that many of those consanguinous marriages are being prearranged. So they are being prearranged between brothers, mostly brothers at a very young age and at a certain age they have to implement this agreement and the couple marry. So what we have offered them is to give them the genetic information about the carrier status in order for them to be able to do a more calculated kind of a matchmaking. If you matchmake between either non-carriers or where only once carrier, you actually still convince the risk of having an affected child. Only if two parents are carriers then this is the case. So use the genetic information in order to modify your decision about arranging those marriages. And then of course as I said carrier screening to allow early prenatal testing within families at risk. Meaning to change the whole habit of using prenatal services in general. Using prenatal services among the Bedouin and not the same way we see in the Jewish population they tend to come very late to have all those checkups and by the time they get there they're already seven or eight months pregnant and there is nothing you can do. So the whole idea was to educate and change attitudes towards genetic diagnosis. I'll go very fast through the audiences that we had or the public that we approached. So within the years we managed to accumulate genetic tests for over 30 diseases. And this is something extremely, extremely unusual. There are very small, very few communities where you have so much genetic information on the community. Even in the Jewish community you have like 15 or 16 kind of diseases that you can diagnose. Here in the Bedouin community we found nowadays it is closing to 40 new mutations not only new some of them known diseases but new mutations in the community, in those tribes. And for all of them we can provide the genetic test and it can be provided only in our lab because other labs obviously are not dealing with this kind of disease. Since 2002 those tests became free of charge that being covered by the government and again it was, we were very instrumental in pushing forward the idea that in communities where there is a certain higher percentage than normal of the disease you should offer this kind of free tests which eventually will reduce costs of hospitalization, longer hospitalizations, very complex kind of treatment for children that nowadays even though they have really very serious genetic disease can survive because of all the modern kind of care that we can provide them. We have produced a lot of reading materials in Arabic discussing the diseases in their own terms, own ways. We have targeted, we have made referrals much more easier to the community. Women in this community do not go freely they need to be escorted by their husbands or by their spouses and some of them you know are not readily available so we provided them with those services on the premises in their communities. And I'm not going to talk about the last thing which is a bit more time consuming. Some pictures I should show you. We made it very clear that we want to use people from their own community. The best people to communicate this kind of ideas and information, the best ones from the community. Obviously this is not a very highly educated community but we managed to bring young people, mostly women. High school graduates that we trained in the very I would say contained way. They are not experts in genetics in general but at least to convey certain ideas and certain messages that we wanted to convey. This is one example of a young woman do it in the mother and child health clinic. See the women sitting there. I mean this is the meeting place where they come for immunizations with the kid where they come from for their prenatal care. And obviously it has become some kind of a social gathering as well. And in all those opportunities we had women educating them in various sessions on various genetic issues. Now we targeted also high school students thinking that this is the future of this community. We produce a duke a drama very nice film that students, young people can relate to it in a very empathic way about a constant community. We have created a new curriculum in human genetics at school, lectures, workshops about those various toppings. The cousin marriage, the advantages because there are some advantages to cousin marriage as well but the ill effect or the potential ill effect of them all kind of issues, all kind of facts about carrier screening about prenatal diagnosis using folic acid, et cetera. We also addressed the religious political leader because we thought or realized that those leaders have much influence on the community, not on the whole community, but at least in their own tribes, own families. So we have designed courses in genetics to religious leaders. Obviously this was very, very challenging but we managed to do that. Leaders of the community now participate in our steering group, steering committee for the project. And since three or four years ago we have a leading religion figure joining the project staff and he's much, he's very instrumental and really conveying the ideas to the public. Okay, we're targeting men, all the women, community events of all kinds, training community, activists, all around the genetic messages and also educating the Jewish health care social services professionals. Many of them are still Jewish. We have more and more bedwing professionals, nurses, physicians, social worker, psychologists more and more. The vast majority are still Jewish and we have about educating them vis a vis you know, both the religion, tradition, all kinds of myth and conceptions within this community. Now, what were and are still the major changes coping with doing both research and community interventions in this very specific community. Now, I have chosen some very clear kind of issues that I think you should be able to relate to because they are coming from our Western culture, Western society kind of issues that are very, very strange and not understandable to these kind of communities. First of all, the informed consent, something which is so natural to us. There is nothing that we do nowadays and we don't do it for many, many years without having informed consent, meaning that you have to inform the patient either before he participates in a study or get any kind of treatment or procedure, whatever. So informed is something very tricky there. I mean, you have to inform, but you also have to guide to say, you know, it's not that only, not only that I give you information, I'm expected to give you an advice what to do and to tell them, you know, it is entirely to you, it's entirely to your wife and to you as a couple or to you as a family to make the decision after you have been provided with all the information. This is something that they don't really comprehend. And we had to really find a way how on one hand, not to be directive because you shouldn't be directive and on the other hand, you know, provide them what they really expected us to provide them with. So another thing that was created to inform consent was the idea of autonomy, for example. You know, we would go to a family and either ask for blood samples, for example, to write an informed consent or, you know, after having an education session, give them an informed consent that they would like to participate in these kind of activities. And then would come the father of the household who said, okay, I agree. I agree, not only for myself, but for everybody, all my kids, you know, my wife, et cetera. At first, we used to sit there for hours explaining what is autonomy. You know, everyone is entitled to her own rights or his own right to decide about his or herself. It was useless, it was useless. Then, many of the participants are illiterate. So one thing was consent verbally. The other thing was to sign. I mean, the idea of having to sign on something that you heard, you couldn't read, but actually somebody else read it to you and somebody else is not really from your own community, somebody from the Jewish community are not going to open this stuff because this is another very sensitive issue here. It was totally unacceptable. So the household was ready to sign up for everybody or not for anybody or not at all. And we ended up by losing a lot of information on people that we couldn't get informed consent and we couldn't really get, you know, the real approval by the participants. Confidentiality goes together because for this community, I mean, knowing what is the genetic status of my brother's son, something very natural. Why shouldn't I do? I know what's my son's genetic status, whether he's a carrier of mutation. I know, I want to know what is the carrier status of my brother's daughter. So to be able to decide whether I want to match them or not. And the idea that this kind of information is going to be either her father if she's a minor or herself if she's already an adult was very, very difficult to understand. And usually, can imagine you're sitting hours on hours with people in the community trying to explain them. And I would say with not much of a success. Test my reliability at first when we only had those link geneticists was nightmare, was nightmare, you know, for couples who understood that their a priori risk was 25% to have an affected child. To be told that now there are the chances only 2% because the test liability is 98% but there is still 2% risk. I mean, it was such a relief, you know, going down for 25 to two was a big deal for them. But for us, 2% was really not highly reliable or the test was not highly reliable. So again, another something very, very challenging was the idea and conception of carrier versus disease state. The idea that the carrier is something, somebody healthy that can transmit the gene, but in himself or herself, our health is very, very difficult. Especially in this kind of a community where the women are the lowest on the social ladder, even lower than children, the lowest. So automatically, they were always blamed. So a carrier woman in that community has a huge stigmatization on her. She's highly stigmatized and have tough time finding mates, although she's perfectly normal, perfectly healthy and with a non-carrier spouse would have normal children. And the whole gamut of mis-prejudices and misconceptions. For example, you know, the term in Arabic for amniocentesis says it is mayat aras, the water in the head of the child. This is the term for amniocentesis. That implies that you have to get into the head of the child in order to take out the water. And you know, they couldn't care about our explanation. It took us years to really take out this term from the discourse and talk about amniocentesis in the right way. Mis-conceptions. You know, there is no term for gene in the Arabic language, but it sounds very much like gene. Gene is a spiritual creature, you know, between a demon and a genie. So, you know, within the whole concept of genetic diseases, pre-determination, you know, all kind of very risky tests. You know, the idea that there are some demons over there and obviously a great deal of suspicion about, and this was another thing that was going on within the community, about a whole plan of the Israeli government to reduce birth rate by way of, you know, eugenic kind of a mission, which was obviously total nonsense. At the end of the day, we were, I think, very, very successful in conveying data and information. We had a lot of evaluation, study evaluation, and the cognitive perception of people, the way they were educated about genetics really made a big deal and a big change, both among students and among professionals. They could understand the facts, they couldn't understand the idea, they could explain you the science behind it. But once it came to the practices to actually decide or actually agree to go through a prenatal diagnosis, this was entirely different. It means that decisions about prenatal diagnosis in general and about prenatal determination in particular, because unfortunately this is what we could offer them right now, there and then, we realized that the factors in such a traditional community are not the ones that we would necessarily anticipate. Well, obviously, the level of location really was very much kind of a factor that really determined. The more educated the couple were, obviously, both of them, the more they were compliant with our counseling, with our suggestions and with early prenatal diagnosis. Gendered, women were more open to that than men. Obviously, women are the ones that take care of the children that are involved with the burden of having an affected child. The strengths of religious belief also correlated with the results, the more religious they were, the less open they were to prenatal and abortion. But the two most important factors were the ones in red, the severity of the familial disease and the number of unsuccessful families. So obviously, the more affected, the more complicated was the disease. The longer the survival of the affected person was, and the bigger the burden was, the more open they were for prenatal diagnosis and wanting to prevent it. But also the number of unsuccessful pregnancies. Because children in general, and male children in particular in this community, is something extremely, extremely important. One woman paid it better having six children than not having children at all. Women are perceived as, the world is perceived as having children. This is the mere existence. This is why they are there. And women without children are being treated, I would say, as a very lower, or extremely underachievers. And of course, they face the risk of their husbands taking third or second or third wife. And what is very, very scenic in that is that usually the second or third wives are not blood relatives. They are women from out of the clan, out of the tribe. Their chances of being carriers of the same gene of the family is very low. So they are having healthy children, just to prove that the blame was on that woman, rather than on the union. So we had really to cope with all these kinds of ideas and thoughts, and as much as possible to protect the women over there. And actually from that kind of experience that I had, emerged my strong belief that one of the major goals should be increase the education of women in that community. So thereafter, it wasn't consequential, but earlier we have founded the first organization to promote education within, better in women in the community, and moreover higher education among those women, in order for them to actually take a more central role in their community, in promoting, and this kind of knowledge and this kind of participation, but also in order to promote their own status. And what we are very glad to tell everybody that we were at least partly successful. So if you go back to this graph, you see that between 2002, in a decade, we managed to bring down the infant mortality in the women community, I would say significantly. Not enough, there is a lot to do still because we are talking about very small numbers. I mean, the percentage look high, but the numbers are small. And now we are actually monitoring each and every case. So each and every case when we have a child born with congenital defects or on genetic disease, we go back to the family and we look what was going on throughout the pregnancy. Were they getting the right counseling? Were they getting the right services? But obviously something significant happened there and the reason was in fact that we managed to bring down the congenital anomalies in genetic disease, I think in a significant way, not again the way we wanted to do it, we wanted to appear, but still I can tell you that in four years, we have managed to bring it down. It is now less than four and the aim is of course to bring them to the ratio that you see in the Jewish population. So it is a kind of a happy end, but we're not almost there already and we are still very active with this extremely comprehensive community-based program, project in the Bedouin community. Thank you very much. I hear you have questions, but it's... Diane. I mean, you talked somewhat about the ethics of abortion in general, but you haven't really talked about the ethics of abortion specifically for genetic disease. Can you talk about that? Yeah. Well, that's a very general issue. This is a very general issue and interestingly enough, the Jewish faith is in fact very open, very open to the possibility that pregnancy with severely affected foetus is a burden on the mother. The mother is the center of our concerns and if she wishes for an abortion, it is fairly easy in Israel to get pregnancy termination. Obviously, this is not the case in the Orthodox community and this is not the case in the Arab community. So we do cater to two communities in Israel that such an option is not on the table at all and there is another program in the Orthodox community called Dori Sharim, a very effective program that actually managed to bring down the Ashkenazi disease in this community to almost zero. But I could talk about it for an hour now but this is, I think, in essence, what I can say. Oh, I'm sorry. Now that you know the molecular relations of Kami syndrome and perhaps others as well, do you have an opportunity to look at the known areas to see whether that gene in single state is affecting the occurrence of diabetes and obesity in that population? It's a very, very important question and this is actually one of my huge disappointments because although, for example, in the mother-bed syndrome, we were the ones, the first one to start studying this very rare syndrome and now there are huge plethora of studies on that syndrome. Yet almost none of the pathways that have been identified till now, there are a lot of pathways because there are now like 16 genes involving that syndrome, 16 different genes. None of them are very prominent in diabetes, for example, or even in obesity. They have something to do with the, I would say, population of genes that involves with all these things, but they are not major. This is one very, however, we do have one disease, growth hormone deficiency in a Bedouin tribe where we identified the mutation in short sets of people, very interesting. First of all, we thought about it because we observed many short people in that tribe that were not as short as affected, but shorter than average. And then when we checked the mutation in a general population, we showed that it is more prevalent in low-stature individuals, low-stature of unknown origin, definitely. So this is the only place where I found a genetic mutation involved in a common, much common trait. So I was just wondering whether the success of your initiative is different between types of Bedouin communities. So between the community that's settling their shell and between the community that's in illegal settlements and communities that still practice thematic lifestyle and whether that is also affected how the Department of Education has taken a long year of treatment. So obviously we have started in the largest city of the Bedouin community, the Rahat, because there the services are much well-organized in the non-recognized settlements that almost no health services or not something which is well-organized. But in terms of genetic diseases, there is no difference, very interesting. No difference whatsoever. There are maybe one or two tribes that don't have any genetic disease and in fact has a very high education rate, meaning maybe it has to do with a more higher intelligence, whatever, we never touch that. But for all others, changes are being scattered in the non-recognized as well as in the recognized places, no changes whatsoever. We started our project in that community, but now the project is all over the place. So it includes also the other neighborhoods, the other former neighborhoods, but also the non-former ones. Okay, I think we're going to have an onslaught of a class very soon, so let's just welcome to thank you so much for this rich and interesting set of reflections on your work. You've given us a lot to think about and to take away and to reflect further on before we break. I want to remind people of our next seminar coming up on November 1st, which is Kim Pate. The title of her talk will be Prisons, The New Asylum. So I hope that you will come back to that lecture. But for now, thanks once again to Professor Karn. Thank you.