lot of barriers in implementing genetic testing. I know Ranjith has talked about the state of art in BARTs, but here we really barely have any access to genetic tests. It's quite costly. Sometimes three times higher than entire family income will be one test cost for BRCA, and that's only germline. I'm not even talking about tumor testing. So in this scenario, it just kind of thought about, I've been working on this for the last few years with Ranjith and also what we can do. Next slide, please. Next slide, please. So as you can see that, you know, on the left hand side, I always say that this is what, in a high income country, a patient with ovarian cancer will go through, have a good surgery, may have intubation or chemotherapy, then they will have BRCA testing or, you know, like HRD testing, have a genetic counseling, then we'll have PARP inhibitors, then we'll have a treatment of recurrence and have quality of life, data collection, survivorship. And when you are in a high resource setting, when I'm working in UK, everything is clockwork. It looks so easy. But then when you are in a low resource setting, everything is so patchy, you know, from top to the bottom. And, you know, as you can see that we have very patchy genetic counselors and tracing at risk individuals and PARP inhibitors are really not accessible. So we really need to look into some alternative strategies. And then one of the things we can, we test is available, but it's very costly, but then we don't have any counseling services. So therefore, we have been doing different type of interventions in all of these aspects regarding surgery, training, and regarding genetic counseling, whether we can train the nurses, HRD testing, low cost assays, PARP inhibitor testing, and, you know, intermittent dosing and things like that. So I'm going to talk a little bit about our strategy for genetic counseling. Next slide, please. So as you can see that there are barriers for both skills and operations, and then you can break down to technical and non-technical causes. And most of the time it is a non-technical cause, which is either the cost or the attitude of both the provider and the patients, which is possibly responsible to majority of the barriers. So you can break down into patient and provider, then sociocultural, genetic counseling services, times and resources and the cost. And then there are certain solutions, but mostly if it's an attitude, then you need to train repeated counseling and training of both the patients and the providers. That's the key. And maybe train up the doctors. We don't have time. There are not enough doctors even in the setups, but nurses are quite a stable workforce. So maybe train up the nurses could be one of the strategies. And this is where I think Australia has a programme called Traceback, where they're actually looking retrospectively into patients and the tumour samples to chase for the BRCA. We have not been there, but we're trying something called Neugena, which is training up the nurses. So this is one of the strategies which might be relevant to low resource settings. And next slide, please. So this is like we trained up a group of nurses, you know, a stage by process with a systematic training procedures, then they have some rotations in the bars as well. Ranjit was there, so I'm very grateful for his support in getting this programme started. Next slide, please. And then immediately we saw there are some changes. You see the bottom chart that the patients before training, the number of patients who attended the clinics or understood the pre-test genetic counselling or underwent testing really doubled up. Or, you know, in terms of really there was a great change when we employed some nurses to do this bit of work for us. So that was the initial days which got us interested in this project. Next slide, please. Next slide, please. But then, as you can imagine that, you know, to implement such a programme, you really need a lot of people, not only nurses or genetics, but you need a telemedicine support sometimes because patients are quite far away. You need a lab where they will be able to collect the samples from many parts of the country, especially when it's a big country like India. You need a cost effectiveness analysis. You need training. It's so easy in the West to implement this sort of strategies in low resource setting. Next slide, please. And also, it's not only the tertiary care centre, but it also needs to be embedded into the... it can be spread by contact or I mean people don't really understand the concept of passing from generation to generation or whether it's contagious. So it's really teaching not only the tertiary care centres but also giving that knowledge to the community as well. Next slide please. So we had a systematic approach and next slide because I don't need to go through the results really but then as you see that you know we got a Red Cup database so any other fellows from other countries or other IGCS fellows if they want to know about more about this programme can join us. Next slide. And there are different barriers and this is like we have been trying to ask the patients or the women that what is that that they don't want to come forward for genetic testing or the families analysis and I'm sure the problems that we are facing might be slightly different in Nepal, might be slightly different from Barbados or Africa and it would be really nice to see through the IGCS platform that where are we getting stuck. It's not only the money. Next slide please. We have some achievements because we got some funds. We won the ASCO International Innovation grant to carry out this work and recently we have helped Nepal as well. Next slide please. Next slide. So as you see that we started this programme in one of the government medical colleges, government colleges. Next slide. Next slide. We are doing some local public campaigning so this is like a theatre show where one of our survivors is actually doing in between the theatre interval time so she's a theatre actress so in between the interval she's kind of talking about genetic counselling or in the community. Next slide. Next slide please. Next slide. So this is where we have started in our two IGCS centres in Kolkata and the third IGCS centre is in Nepal which we have just started this work. Next slide please. Next slide please. And we just completed training for nurses from 10 centres and the programme has proved that it's acceptable, sustainable, scalable, effective and it does lead to early diagnosis and treatment so only time will tell but I think this is a strategy which we might try something in low resource settings. Of course the benefit of being under a research programme that the bracket testing is part funded and we are doing at a nominal cost and that kind of really makes the stress that we really need to be involved in a lot more research projects so that we can fund at least genetic testing and then the family tracing prevention and this sort of work so basically we really need to join hands together. Next slide please. And this is just another case which I wanted Manisha our IGCS fellow to present but this kind of just shows that how we are working together in India and Nepal but this is one of my patients who is a resident of Nepal, 55 years of age, high grade serious, stage 4 and she was referred by my IGCS fellow from Nepal when he was posted in India as a part of his training last year so he referred this patient to the centre where we were operating so she had a neoadjuvant chemotherapy in Nepal and then had the surgery in Kolkata where we were training him. She was under a study on high-tech that's why she underwent this study and then she underwent a genetic counselling through this New Gena programme. Subsequently she has been on maintenance PARP using another PARP inhibitor study that we are doing so it kind of just shows that the interventions which are very common are funded in the West we can do it only in our setting through research. And then Dona might just talk about the genetic counselling bit because it's very important how many family members we have managed to trace from this single individual. So Dona could you just go through the last couple of slides and then we would end. So this patient was a high grade serious ovarian cancer diagnosed at 55 years and she came with her son so both of them came together unaware about genetic testing and since she was a family member of the IGCS fellows so they kind of insisted more on getting this testing done. So once we tested her we counseled her the pros and cons of doing the test so what the test involves, how is it going to be important for her and her family members. So the whole process of New Gena was discussed and then the patient participated in the study and we have a part what is called the willingness to pay study. So in which it is like a co-pay system where the patient pays half like as much amount as he or she feels that should be paid or is sustainable and the rest is paid through the study. So accordingly we assessed the willingness to pay, we assessed all the questionnaires and the inclusion exclusion criteria and then we included her in the study. So once she was included in the study since she was from Nepal she returned home and then we got her results which came to be high grade which came to be obviously BRCA1 positive. So after that we did like a post-disc counseling virtually and we gave her all the reports and so we also planned for casket testing like testing for all her family members, at-risk family members. So initially we started with the first degree relatives and then we would be proceeding to the second degree relatives. So we tested her son and all of her brothers and sisters so what we did is it was also very interesting because one of the family member brought like we did all the counseling session online after which we received all the bloods by collection like one person from Nepal collected all the bloods and then they came to India and we connected with our team the one who does the reports and then we connected it and it was a I would say a great like exchange and then ultimately we kind of got the reports. So again we came back returned and we did the post-disc counseling. So as you can see so two people were found to be carrying the same gene so BRCA1 positive was found in both of them. So for the negative people we counseled regarding what next to do so they would be leading the normal life but also be keeping check on the other types of cancer. So we did what is called COBRA counseling so awareness about cervix, ovary, breast and oral cancers. Other than that for the family members who were negative we told them not to do the casket testing for their family members like the second degree relatives but the ones who were found to be positive we told them that now they need to be on follow-up so we gave them the guidelines for follow-ups and now we have given them follow-ups and they are doing all these in their own respective countries. So now their next generation they have also planned to undergo testing so the people who have matured over the age of 18 all of them like there are two people who are over the age of 18 and they will be doing their tests in America where they stay and the rest are still on follow-ups and we have kept them on hold because unless they turn 18 we won't be able to test them. The rest for the other family members we can see we already saw that it was coming from the mother's side of the family so we also told them to do the second degree relatives so since her mother died so her mother's sister and the other sister but unfortunately very recently we got to know that one of the other sister has also been diagnosed with the cancer like we tried to bring them back to the clinic and get them tested but due to some logistic reasons she wasn't able to do and she wanted to try it back at her country and she lives in Dubai and now she has been recently diagnosed so this whole situation makes us understand that it's very important to identify the potential risks of being a carrier and and if you find something in the family it's very essential that all the second degree and third degree relatives are also tested because just because of one year gap the second individual was also diagnosed with now a high grade serious ovarian cancer which might have been averted if it would have been diagnosed at an early age maybe a year back. Dr. Aseema. So thank you Donna. So Donna happens to be our trained nurse genetic counsellor who is doing all the training and one more thing came out of this project that the patient's son and daughter-in-law they have become our patron and they are actually funding a lot of money monthly to in order to make sure that we can carry on carry on this work on genetic counselling and training in both in India and Nepal so that we're very thankful for them. So that is also patient advocacy. So I think you know the bottom line is that because we don't have genetic counsellors so the doctors and nurses we are the frontline workers and we really need to know how to do this. So I'm asking all my fellows to be you know maybe learn how to do this because we will not have genetic counsellors trained genetic counsellors in our society for maybe another I don't know how many years and then there is always support. I'm sure Ranjit and you know there are so many other people who will be willing to help us whenever we get stuck in terms or the teams and that's why I think it's such an important issue now but it really feels very bad when we see the disparity in the terms of the infrastructure and what we can do to our patients into different parts of the world. So I'll leave there and just ask some comments and then Ranjit is back. Yes, Dr. Ranjit. Thanks, no, great talk and huge amount of work and congratulations on all the work you do. And just one comment. I mean, you were talking about TracePak. I just will tell you our experience. We did it systematically for our cohort of ovarian cancer patients and we picked up another 35% carriers when you do retrospective, not just prospective. That was our experience. Wow. No, that's important. I mean, even for our things, because we have so many patients who have been ovarian cancer diagnosed and we don't even have done these. So genetic testing for many, and because we have such big families in India and Nepal, I think for one patient, there are so many at-risk individuals. So maybe we need to take a strategy of really tracing back from our registries or something going back. I think you could do that also. I'm not including cascade testing in my estimates. I'm just talking about, at the cancer diagnosis itself, you get another 35%, which you will double if you did, or triple because you get double more at least. And if you have bigger families, you'll get more in India. So the potential would be huge. I don't think that should be ignored. Any other comments? I'd be curious, there are lots of people on the call. Hi, Ross. Ross is also on the call. What is your policy of, we're having this debate at the moment. Our policy, clearly we need the germline testing. There's two counsel patients, probably we take it from 10. For somatic testing, what do all of you do? I'll tell you what we do at the moment. We do counseling, we confirm consent, and we document it on our electronic records, and we let the pathologist know once the pathologist, the lab knows, and we confirm consent for somatic testing, it goes off for HRD and BRCA1 and BRCA2. But they cut the slides up front. So when they process the tissue sample, they cut the slides up front, so the specimen, they don't have to go back and pull the specimen and cut the slides after that, because that's more work. So when you do the operation or whatever, you make the diagnosis, you cut the slides, they're ready to go, but we confirm that counseling has happened, and then they send. But there's a big push from some colleagues who say that maybe we should be doing this reflexly. I'm curious to see what everybody else thinks. My view is that I'm a little uncomfortable, uncertain. We're going to be running some patient workshops on this in the coming weeks, but we are updating our BGCS guideline on this issue, so I'm not sure what it's going to come out with, but it's a topical issue for us, and I'm curious to know what other people do. And what they think. From the somatic testing perspective, tumor testing, not the germline. In Newcastle, I'm for reflex testing, because it's somatic. Yeah. And all immunohistochemistry has a potential for germline component. Any tumor, we look at a cell, you do immunohistochemistry, and to me, in my head, that is an extension of immunohistochemistry. Anjula, I'm talking about HRD and NGS on the tumor tissue. Not NGS, necessarily. NGS, I think it's a slightly more complex, but in terms of HRD, to me, it's a tumor, and therefore, it should be done reflexly. In our region, I have everything cut, like you said, up front, complete the form, and at the MDT, it's just ratified by the medical oncologist who gives me the go-ahead that they're okay with that process. So we have a fail-safe within our MDT where that is decided, and the med-ons take the consent. So it's almost reflex, but ratified at the MDT. Okay, so the problem I have with this sort of approach, or one of the concerns, not a problem, and I don't know what the patients feel about this, but we want to find out, is that in our system, it'll go directly off to the GLH who will run the BRCA sequencing with the HRD at the same time. Now, if you get a BRCA positive result, that means there's a 70% chance you're germline positive. Yes. So you're really going to then go and counsel a patient and say, hey, you have a 75% to 70% chance of knowing you have a result. That means, hey, you're positive. Do you want to know if you're positive? So I have an issue with the counseling perspective. The a priori probability is very different there than when you do it reflexively for Lynch or something. It's the two different very, I can understand the benefit from a logistic and a pathway implementation and streamlining the process, but from the counseling process, I just wonder what patients feel about that. If I look at it from the counseling hat, I feel a little uncomfortable because the a priori probability is very different, but I really don't know what our patients feel is there about this. I just think it's in the best of interest of the patient to have that information as quickly as possible, being available to the med-on when they need to make that decision. So that should not stop being, I don't think that's going to create a big hindrance in time. Well, the problem is that, it's I think it's the pathway and the flow is much smoother. We can result in time. Agreed. And the pathologists are so inundated throughout the country. There have been so many demands, increasing demands of our time. And each time we get an email back, there's the flow is interrupted and it really affects our workflow. Yeah, as I see, I see the rationale and the logistic advantages from the pathway. I am not sure what people feel from the counseling perspective. See that has a knock-on effect from an a priori probability. And I raise this because it's a contentious issue. I'm not saying I have a solution to this, but it's something we don't need to address in the BGCS. And we are looking at it. I think it's really a very good question, Ranjit. We are actually testing, start initiating HRD testing before counseling because it's initiated from the MDT, from the diagnosis of high-grade serous carcinoma. And I don't know if that's right. And I don't know if we will be able to continue doing that, but we then cancel the patients. As medical oncologists, we cancel them when we see them for their germline testing. And actually very few refuse. And at the time that we're counseling them for their germline testing, we don't usually have the HRD test yet. So we don't have the somatic BRCA, but that does usually come back before the germline test. So I suppose the problem would be if a patient refused testing and we had already done it. But then I suppose my position on that would be that you still want to be able to give them the best treatment. So it's still an important piece of information for their treatment to know what their tumor is. And then I would cancel them again. If I was in that situation, I think, I mean, mostly everyone has agreed to testing. So that's, we've not really been in that position, but I think I would, then you can come back to them and say, look, we have found this. Do you still want to be in that position not having your germline testing done? Because we are now, you would be canceling them that their risk is very, very much higher. And that may, they still have the choice to not do it, but you're actually giving them even more information because you're telling them that their risk is whatever from having their high-grade serious or whatever it is if they have an endometrial cancer. You're already giving them that information. You're now giving them the information that we think the risk is that much higher. So I see the advantages and I see the benefits and I see the medical oncology or the surgical oncology or the cancer clinician perspective. I usually appreciate the pathology perspective because that makes the smooth lines, the workflow and the process. But if you really look at it from the genetic counseling perspective and the principles and a priori and actually autonomy on decision-making, where you have true choice, that's where it's not, it lacks the, one of the advantages that in my experience also, 98% of people take it up. Very few people refuse it. The other thing you could throw in the mix and we were discussing this in the team also was, hey, in predictive testing, you have a 50% a priori probability, but although this is not predictive, this is diagnostic testing. So I don't have, I think it's an important issue we need to address. I think it's contentious. I don't think there's an easy solution. I don't know what patients feel about it, but we want to do some work around it. And if patients actually feel that that's okay, then I think then that's the way we should go. But if they say no, then we need to go back as a community to talk about it. Yeah, it's a very good question. I just got a comment on everything that Asim is doing actually, because it's very topical. We're just about to go back and review all of our hereditary ovarian panel testing and looking at the number of families that we, you know, members we picked up on cascade testing, because I think it's the onward piece of work that comes from that. So we managed to slip into the sign guidelines back in about 2013 or something before they got it in England, that we would test all non-mucinous ovarian cancer cases. And that was great. We did that, but at the same time, there was no support for either the genetic counselors or for the screening services and the preventative services that came with that, and no coordinated program really for those family members. And so we wanted to, one, look at how many, do some health economic work and look at the service provision. Because I think we're just about, with endometrial cancer now, we're testing for Lynch effectively, you know, by doing that. And absolutely rightly, because that's one where, you know, the screening is going to make a huge impact if we can identify these people. But our services are absolutely, you know, ramped in terms of providing that care. So I think it's really nice to see that you're doing that sort of combined approach because what, you know, the last thing you want to do is identify families and then fail to offer them what they need. The health economics, Ross, we have a paper under review. I showed the summary stats around that in the presentation, but Charlie is involved in that. In fact, we have got Scottish data in it. Okay, great. So it's for panel testing, it's under review, and we show it's cost-effective to do panel testing, not just breakout. Yeah. And that's what we should do. That's great. We have the Edinburgh data then. Yeah, we have the Edinburgh data. Okay. It's great discussion. And I know, I mean, this will never end. And I think I would just.

genetic testing

low-resource settings

ovarian cancer

genetic counseling services

alternative strategies

low-cost assays