 Thank you very much. It's a pleasure to be here today and I'd like to begin by thanking the organizers for having invited me I'm conscious. I'm speaking at 5.30 in the morning in Colombo This is the earliest talk that I've ever given in my life So whenever it's invited to talk I was really wondering what to talk at this audio I know it's going to be a high-part gathering of global leaders and I don't consider myself in that league Operating in a research resource poor setting as it were although I really don't like to say that The first question that's asked from me most of the time when I come to the states is very Sri Lanka So I thought I'll put this picture up and tell you that it is in the middle It is the middle of the old world and the new world is not there And Just to tell you that it's the middle of the old world meant that it was in the middle of the silk route And if you really look at the archaeological evidence in Sri Lanka, we have coins from everywhere in the world Which shows that it was actually the middle of the world and Recently one of the archaeologists said that you know, we were the counterfeiting capital of the world And I didn't like that no characterization of Sri Lanka as it were But you know, everybody knows about the pyramids of each other and the pyramids in Egypt But where if you that was 6,000 years ago, but 2,000 years ago The twin towers in the world were actually in Sri Lanka. Those two buildings up there. They are Buddhist troopers which are taller If they are more than 4,400 feet tall built and stand up to this day And they are and even the most ancient excavated hospital in the world is in Sri Lanka So we had a very advanced civilization at that time, which went into decline and the technology that built this also went into decline and About a thousand years ago and we don't have documentation of that When the British came to Sri Lanka in the 1800s We were first to embrace western medicine at as it were and some of the earliest institutions In that part of the world are there and this is where I am the faculty of medicine University of Colombo and you can see the old colonial buildings which are standing up to this day the Unit I work is the human genetics unit in the faculty of medicine in Colombo, which was established in 1983 by my Professor who my boss who was actually trained in the UK. I followed him About 15 years later and also trained in the UK and returned back to Sri Lanka in 2004 and up to this day We are the only medical genetic center in the country providing clinical genetics diagnostic services And also training research and so on and we serve a population of about 20 to 21 million people now when I went back to Sri Lanka in 2004 I was you know, I had this big idea. Okay done research Let's go there and set up a research program and thought very little about the clinical side of things But it didn't take me long to realize that There was no funding to do research and the research came became a real small component and it was the clinic that Where we really had to operate seeing the patients Kettering to their needs looking after them and so on so I thought I will try to Well, let me go back. I thought I will try to Tell you a little bit about the Sri Lankan health care system at this point because you see Although we are not as kind of strong in research I think we have been very efficient in translation of the research findings Elsewhere and applying it in in clinical practice after all we are all human and I think You know discoveries made in other part of the world We should be broadly applicable in our country and one of the advantages we have is that all our clinicians Serve a mandatory period of one or two years Outside of the country before they get birds board certified as consultants usually in the UK, Australia And therefore they are they are you know exposed to first-world care and when they come back they practice I would say Okay, which is comparable with the UK, Australia and that would mean rest of the world So if you look at some of the health indicators of Sri Lanka, I just thought I'd compare some of these indicators with that of the US and Singapore affluent neighbor in our neighborhood You can see the life expectancy Is hovering about 71 in Sri Lanka. I think it's 77 in the US and Singapore slightly higher If you go to the lifetime risk of maternal death, I mean Figures are coming down dramatically in our country and Infant mortality similarly and that in a background of Economics which look like this a per capita income of Sri Lanka standing at 3000 Compared to per capita income ten times that in the US and Singapore And of course a health expenditure, which also looks like that So if you were to talk to the World Bank or the other funding agencies, which I do very often There's think of us as a high efficient low-cost model and they are you know Query all the time is why can't other developing countries try to emulate that model so the issue that I face and a few of us who are you know Making the case for genomic medicine face is that what gains can we bring through genomics To offset the huge gains that have been made With the conventional technologies as it were and I think we need to You know take that into consideration and you would appreciate that Perhaps the reason only I'm here from kind of a less affluent country is that the people who operate actually Or the countries which are at that level Would find it very difficult to make that economic case because To you know bringing genomics into the picture to bring down the you know improvements such as we have shown in Sri Lanka So I think we need to be cognizant of these facts So this was this is a situation that I face in Sri Lanka in terms of research and the bedside and so we Try to work on the bedside More looking at research happening elsewhere in the world So towards the end of last year December it is the ongoing process we We thought we need to really take and how it's been almost 10 years since I returned and started developing a unit and a team and we thought we need to look at what we want to do and Look at it from a more strategic point of view Strategic planning and development as so we articulated a vision for us and a mission Which was very much focused on delivering care to the patients and Then We are not alone in that because we had by now established Collaborations of with various groups and networks across the globe. So we didn't feel You know that we were in a developing world setting. We thought we will embrace it head on What are the services available in terms of technology in the country? Mind you we are the only Center which is you know delivering any form of genetic care to the entire population we have partnerships with one of the private sector hospitals which has enabled us to bring in technology and deploy it through their system which is also You know propelling stuff and of course. We've just seen the process of establishing a next-generation sequencing facility So these are the technologies which are available in the country current manpower Support 30 to 40 people You know serving the needs and our biggest problem is brain drain I Would have trained 70 people in the last 10 years and out of them about 60 have found employment either in the US UK or in Australia and So it's a continuing Problem so we are moving from brain drain to brain circulation and trying to see how we can actually try to make use of these people even if they are working abroad and We have taken various tests to bedside including some of the farm cogenomic tests and so on And they are being widely used and of course we've also established partnerships such as with the European Molecular Quality Network to try and Subscribe to that External quality assurance program and also we are in the process of working towards ISO accreditation really in terms of research We are now developing Various thematic areas we've also on top of genomics brought in a little bit of stem cell biology because there seems to be Interest among the scientists working with us there as well and our research collaborations Are built around collaborations we have linked we have developed with the uncle the various professional medical groups the oncologists the surgeons the neurologists Thermologists and so on. I mean, there's some professional group always working with us And the next layer obviously is the international collaboration. So why do we work with the? professional groups it is with the view to bringing about you know continuing if they have in research with us They will work and then of course we want to use a kind of Online platform to make them genetic literate so that we can move forward. Otherwise, you know, we can't engage them In addition we that's where we asked located in Sri Lanka We have been training people from up north in the middle and down south and of course We are sitting we've in June last year when the International Genetic Education Networks had their meeting in Colombo We established a kind of a Network of medical schools in the country develop deliver, you know proactively engaging in Education not only of doctors, but also of the allied health professionals Now with that mission and mission We've now we are now in the process of articulating certain, you know, translational goals as it were and These are this is one of them because there is a need from the from the cancer the oncologist I won't go into details of it We've made the case for expanding cancer genetic services and the reasons the rationale is there and the strategies that we have adopted to Bringing some of these technologies to the country are also listed here another area that and I agree with that statement about you know Keras testing and you know her to test Keras testing which was mentioned earlier because that's the exact, you know You know case that we made to say that this test should be introduced here Similarly, we we are now in the process of introducing her to new testing because in the absence of testing every breast cancer patient is getting accepting which is a wasteful thing Well prevent and cure thalassemia is also one of our other goals Just to dwell a little bit on that because you know, this is the Big burden that we have still of the monogenic disorders We have for example thalasse 3000 thalassemics taking up 5% of the annual drug budget of the country for chelation and and and and and of course blood transfusion which is provided free in the public health service Which is leading to life expectancies of these children Going up to 30 40 years now and every year a million rupees is spent on a child for this and it's it's becoming a huge burden and of course that lack of other other services are also contributing to that and we are we are planning to You know help support establishment of those as well And one of the newer things that we really want to do is to work with genomics the last one last strategy Want to work with the primary and secondary modifiers genetic modifiers of the condition to see where the treatment treatment received by these people can be optimized and and These patients can be optimized and that and the condition made a more manageable one Again a traditional area but defects and inborn errors of metabolism. We need to work in that area simply because Because the burden is what is preventing us from achieving or you know, making that last mile from like 11 per thousand infant deaths to like six or seven, which is that in the west because we don't really Terminate pregnancies and we do not have a program which is aimed at controlling We've also worked on improving general genetic literacy among medical and allied professionals and one of those Initiatives have been the initiative that we have we have with the the international genetic education network run by the American Society of Human Genetics We had a successful conference in Colombo Colombo last June and we are now in the process of establishing South Asian network and of course we also trained the first geneticist in In Nepal and now Nepal is developing their infrastructure and we are trying to help them further so that Even with our resources so that they could also develop their services there So ladies and gentlemen, I think in the past 20 minutes I have just taken to you through briefly on how we've you know in the setting that we work in Try to do our best and I hope that you know the next time that is Gathering like this maybe in a few years time I'll be able to say much more about how we what we have achieved through the goals that we have set up for the next two years, thank you very much It was brought up in the panel something about pathogen sequencing Could you talk about you know given your location and you know it? I think global health being an important and infectious disease being You know so important. Can you talk about pathogen sequencing? Yeah? No, I think I I should have mentioned that I didn't put all our goals that we had put up So metagenomics is one of the areas that we want to really work on very strongly and at the moment We I wish I should say we are you know articulating our goals on metagenomics so in terms of genetic laboratories, I think the the bulk of the work in you know Genetic laboratories especially in the private sector sent to be on detection of Pathogens and so that tends to I think I know colleagues both in Sri Lanka as well as in the in in in India Where there's a lot of work, you know most laboratories genetic laboratories actually survive on the side business of doing diagnostics for infectious disorders disorders and I think There is definitely a case for you know introducing metagenomics and Taking that into the clinical realm Thanks, so you mentioned that you're using modified genes so you screen for modified genes for thalassemia It's one question the second question is are you considering using hydroxyurea for sickle cell and And thalassemia mosaicates The first question well, we don't do it in a clinical setting as it were This is some kind of a work in progress Trying to take a research and Secondly, we know we don't test