Patrick Short 0:00 I'm here today with Natalie Kingston, the director of the National Institute for Health Research bio resource for translational research. It's known to many as the NIHR bio resource. And it's a panel of 1000s of volunteers hundreds of 1000s, I believe, both with and without health conditions who have consented to be approached to take part in all kinds of different health research, we're going to talk about the programme it's been running for for a number of years, and has contributed to all sorts of exciting genomics and precision medicine research over this time, I actually encountered by resource for the first time I was a PhD student, I worked for the team to analyse some of the very earliest whole genome sequencing data in the UK, that was part of a pilot for what would eventually come the 100,000 Genomes Project. And I didn't know much about this project until I started to get involved. And I just thought it was amazing how much how many volunteers and how much data across all sorts of interesting technologies were being collected. And one of the things that was really pioneering from my perspective was how engagement with participants and the ability to recontact participants was actually thought about really from the outset of the project. So we're going to spend some time talking about that participant engagement angle, because of course, anybody who's worked with biobank data or other large scale genomic datasets knows that this is not something we can take for granted. With that long intro. Natalie, I'm really excited to speak with you about how the buyer resources evolved over the past nine years, and some of the work that's on the horizon. So welcome. And thank you so much for taking the time. Nathalie Kingston 1:24 Thanks very much, Patrick, lovely to be here as well. Thank you. Patrick Short 1:27 So as I mentioned in the intro, you've been the director of the bio resource for about nine years. I'm curious, what drew you to this role in the first place? Yeah, so Nathalie Kingston 1:35 it's a bit of history here. I think, you know, like a lot of people that always had an interest in science and the biology in France. I did a PhD in Scotland in immunology. And after that, like, you know, lots of people, you the postdoc has been scientists looked at autoimmune and infectious diseases. And then obviously, yes, as you said, our past did cross when we worked on the Sanger Institute, and where I was exposed to research on a much broader and bigger scale, really, and but the various source what actually really interested me is is their mission, you know, the potential impact that it has on everybody, you know, as strapline is bringing people together and leading research. But actually, the whole point of the berry sauce is to head facilitating, and speeding up research in experimental medicine or early phase clinical trials, to really contributing to to better understanding between the link of between our genes, the environment and disease, and to better understand specific conditions contribute to the development of new diagnostic and the potential to develop new treatments as well. And I think all that actually sums up quite a bit what the bioresource can do for for his research. Patrick Short 2:51 And what are the keywords there is the translational aspects because like many bio resources, unlike many bio resources, you all do a lot of work in, in the early phase clinical trials. And at that interface, I was curious, what was the buyer resource, like when you joined nine years ago? And how has the scale and the scope and the kind of research you've done evolved over those last nine years? Nathalie Kingston 3:12 Yeah, so yeah, I joined in February's 13 And at that time, the founders, the NHS, the National Institute for Health Research has just announced that it wanted to support and establish a national infrastructure to facilitate health research and translation. So it all started in in Cambridge back around 2005 2006 When some researchers wanted some blood sample from volunteers, and they realised very soon that actually reading lab colleagues was no longer an option, really, you know, Sue from one Cambridge power centre, it actually became a federation of eight local centres in England. So that was created and to get bette r national reach really, and obviously, a better number of volunteers, you could donate a sample. So our participant, the consent, still the same system as back in the early days, and the the consent of bioresource, they donate a biological sample, ideally blood because we can do much more than a saliva sample, we can therefore get some genetic data. So it can be just high density array to exome or whole genome sequencing. And then of course, you know, the criteria here as well for us was for their samples and their data to be stored safely and securely in our infrastructures as well. And Parsippany provides Some self declare information about their health or their lifestyle. So whether they actually smoke or have alcohol consumption as well, and they consent for the bioresource to access their health and medical records as well. So that's the unique twist about it for the various sources that actually those volunteers can be contacted to participate in the future in studies and according to a specific genotype or phenotype. So we have various national programmes now, and we recruit the same members with public loads of blood donors have joined the panel as well. And we've got patient in IBD. So inflammatory bowel disease, non alcoholic, fatty liver disease, mental health disorders, and obviously, as well, quite a lot of rare diseases. And more recently, obviously, we went into COVID-19, as well. And so there's there's plenty of scope to do and most more recently, and very recently, we launched a young people's parasols. So the first phase is to recruit through schools. And for that we really want to give all pupils the opportunity to contribute in his research. So this is this is another aspect that we are developing right now. Well, I Patrick Short 6:17 wonder if you could share across all those examples of disease areas, and there will be dozens of projects and programmes going on underneath each of those, what are a couple of the most exciting moments that you've had over the past nine years, where you've been leading and developing this resource. So it's Nathalie Kingston 6:31 difficult to pick up, I think, a couple of them, but I will say that actually, they are the most rewarding, exciting, but most rewarding, definitely. So the berry sauce has a history in recruiting families with a rare disease condition. So we've contributed to the pilot for the 100,000 genome project run by gender genomics, England. And one of those achievements, or most rewarding moments for me is actually the what came out of the next generation project. So this is a rare disease project that was led by Lucy Raymond and David Roche, two professors in Cambridge. And what they showed those research team is that you could actually do whole genome sequencing on very young patient in NICU or PICU. So a neonatal and paediatric intensive care unit, and that could contribute actually, to the diagnostic to the underlying condition of those children. So not for everybody. But actually, a good percentage actually could be understood through a whole genome sequencing. And obviously, the time is of the essence, in general, for rare disease patients, in particular, the patient journey, as we call it is more no DC and takes years. And it's actually you, you have a very young child, your child being in NICU, or PICU, you want to actually know what's wrong with your with your child very quickly. And actually, this is translation as best because it showed that whole genome sequencing can be used and is now one of the NHS first line diagnostic tool for, for such cases. So this was really very much a research project has translated into the NHS. So that's that's, for me, as is quite key is seeing this from the start to the translation in the clinic. Patrick Short 8:28 And it's gone. I mean, it's gone really quickly at I've remember, in even three or four years ago, there, these were just early proof of concepts. And there are there so much how quickly can we turn one of these whole genomes around? And can we do it in a week? Can we do it in three days? Can we do it in two days? And now like you said, it's, it's being rolled out across the NHS, right? So that is that's really fast. And in our, in our world where new drugs are diagnostics can take a decade sometimes, Nathalie Kingston 8:54 exactly. And then the second example is again, where time was of the essence and when we actually went into the first lockdown due to COVID-19. And, and seeing actually what the bioresource could could do. And so we adapted all our processes to ensure that actually, we could contribute to the research effort during the pandemic. So we've established a barrier source COVID-19 code, and then from there, we actually recruited members of the public as well as patient with the various degrees of severity. So we had an individual who were completely symptomatic. So we're talking about not aware that they had COVID to patient who were admitting admitted in the hospital but just needed to stay for a few days to obviously patient who had a much more severe infection and in required ICU stay as well. So from that we recruited about 8000 participants to the COVID-19 Berry source. We supported about 50 research projects already and some of them have actually led to some very key finding and high impact communications as well. Two, were really kind of proud of that, because it showed that we could change our processes and really contribute to, to, to the research at a time where actually we did everything and anything thrown at after at COVID. So some of the highlights, for example was studies from Ravi Gupta, who is professor from the University of Cambridge again, and who showed that actually some individual, for example, in our ageing population, as well as immunodeficient individual didn't respond so well to the vaccine, for example. So when the vaccine were rolled out, if you recall, we had quite a large gap between the first and the second dose. And because we were trying to have everybody as many people as possible to get the first dose. But it was shown actually, through those studies, that actually a high percentage offensively to didn't have a fully functional immune system would not develop the same vaccine response. So potentially, they were not as protected against COVID As we might have sought, Patrick Short 11:12 can you manage the what I imagine is a really large influx of ideas, requests and research programmes, once you built to buy a resource of the scale that you all have. You know, that there's a there's an endless list of scientific questions and ideas I think that smart scientists come up with how do you balance that being the mission of the resource, ultimately, to enable these kinds of discoveries with some of the real challenges around things like participant fatigue, and you can ask participants to take part in an endless array of research opportunities, plus, there's the operational complexity of running, like he said, 5050 research projects, even within that, that cohort of participants, how do you balance those two aspects of? Nathalie Kingston 11:54 Yes, it's quite challenging. Actually, luckily, most we had to drop out all our non COVID work. So you knew all the efforts were on focusing to to towards COVID. So at least they actually put on hold all the non COVID work. So whether it's diabetes, or cognition, and mental health, etc. And that did allow us to, to actually focus more on those studies, because we felt that the urgent public health needs were much greater there. And we obviously look at the potential impact of a study and then trying to actually gauge efficiencies, that science, we're not reviewing at all proposals, this is not our job, we're trying to see if actually, it would be the best use of the sample, the data that we already have, and obviously have the recording of our participants. So every work involving members of the public is very tightly regulated. So you've got ethics and governance, sitting over all this. And for us, we actually can invite our participant up to eight times a year. And this has to be a maximum of four face to face participation. And another four, for example, online questionnaire seems lengthy. But it was quite interesting to see that members of the public were very keen to contribute. So we have had also some concrete members of Congress completely come and dependently forming our bioresource team to try and to just say, How can I help? You know, how can I join? How can actually contribute to research? And this we have not seen this before? COVID? Is that Patrick Short 13:39 Is it a because there is, you know, it's discussed frequently how difficult it is to engage people in research for a variety of reasons. There, there may not be anything in the immediate term for you, as a participant, there can be fear concerns, all sorts of reasons not to participate. But I think you all are living proof that there's at least hundreds of 1000s of volunteers in the country that are really engaged with them curious, whether there are things you've learned over the last nine years about how to make research and taking part in research resonate with people to seem like something that would that would really be worthwhile doing? Or are there people in the population that naturally kind of self select and opt in and as cohorts get larger to millions or 10s of millions of people, we actually may have false hope from some of the smaller cohorts because as I, as I hear about cohorts being announced in this country around the world, at the scale of millions to 10s of millions of people, I wonder whether the lessons we've learned in the in cohorts of the size of yours are the UK biobank that are hundreds of 1000s to half a million people which of those things we can port over to this new level of scale. But what what we might, what might be a false lesson learned that as we get into the really 10% of the population, being involved in research, we need to to relearn, potentially, Nathalie Kingston 15:02 I don't know, if it actually scale up, it's a lot of work so, so you can very bank have half a million bioresource is just over 200,000 participants on our books. It's also because we do recode by genotype or phenotype, a lot of our participant actually have joined a better source and they have never been recorded themselves. So we probably have used that data, most likely as well, there are some port, but we never necessarily have records them actually for participating in a research study. So we are always battling with this and how to retain our participant, how do we remain engaged with them to ensure that actually, they know that they have signed, and they have not forgotten? And, and also to just show what their contribution, especially in terms of data and some poll have made and the impact that he has actually done for research. So this is quite challenging, actually, and maybe courts who will have millions of participant can afford almost to lose some, because of the large scale of this they start with. But I think that engaging and retention of participant is is very, very crucial. It's not a mean feast. I think also, there is more concern about industry, as well. And when you talk about genetic data, what are you going to do with my data? Are you going to sell it? Or are you going to pass it on to an insurance as well, you know, for complete different purposes than actually contributing to health research. So there is a lot of force. So insecurities about this. And and and participant want to actually own the right to decide what bioresource source also called do with their sample data. And obviously, it is there. So we have to ensure that we listen to them, and they actually guide us to what kind of research they are happy and feel comfortable. And to support. Patrick Short 17:06 Yeah, this might be a good time to start to talk about the project, we're working on together a participant portal, that that you all are developing for the bio resource volunteers, I'd love to hear more about what got you thinking about this, you spoke a little bit about the need to really invest in participant engagement, retention, what got you thinking about developing a participant portal, and I know next month, looking at showing early versions of the platform to get early participant feedback. So be great to hear more about the the motivation behind that what you've done up until this point to engage participants in what you're thinking about for the next 510 years. Nathalie Kingston 17:42 Yes, thank you. So I think you know, so far, we did some open days and and then trying to be at a Science Festival and where raise awareness of of research, but that's actually to raise awareness more amongst any member of the public and not necessarily keeping our participant engaged. So we have some newsletters, obviously, when we contact them to invite them, we show you know what kind of study, they are out there that they could contribute. But obviously you only invite to study. And for people who are suitable for that study. So it did only see a very narrow view of what the barrier source is doing. So we found that actually, to keep them engaged and also have much more interaction with them, we could have a platform so that participant portal whereby a participant could come and then just look at the arrays of study and clinical trial that or they're out there even if they are not suitable themselves for that particular trial or study. And also suggest trying to make them decide whether they are keen to still happy to continue provide a blood sample, maybe actually, you know, they had a bad experience or they have a venipuncture fail now, and they do not want to do this or are they okay to contribute to industry led studies and just trying to seek out their preferences really try trying to see what fits best for those participants. And maybe life is a bit too busy and dominant and they don't want to be harassed almost by getting an invite from the various sources they want to go and pause for six months, nine months a year. And that is kind of something that they can also have an update their their contact details. You know, maybe they have been diagnosed with a new condition or they have stopped smoking and, and all that help us to actually determine their profile to invite them to future studies as well. So it was very much that kind of engagement we wanted from from our participant. Patrick Short 19:58 Yeah, and one of the things that I think about a lot is a lot has changed in the last five years. Could be even longer than that, that GDPR has come into force. And and there's also nothing to say that in the future there, there won't be different data privacy legislations. Right? I worry sometimes that biobanks that have relied too much on very broad upfront consent, that it's important to take that product from consensus, you don't want to be bothering people constantly to ask for, for everything. There's a balance here. But I also worry that if there's no clear link back to participants, then if if the legislation changes, for example, it says you need to affirmatively reconsent people every every five years or 10 years or whatever it might be, then then there, there could be really major resources that are lost. And not because the participant doesn't want to want to participate. But just because the infrastructure isn't hasn't been put in place, for example, to keep that dialogue almost keeping refresh. Is that Is that something you all have worry about or think about? Or or think could be on the horizon at some point. Nathalie Kingston 21:04 But I think I think it could be, as you say, legislation always change. And it's very difficult to gauge what actually we will have to go through and, and the larger the core, the more work obviously, ran for the bioresource team it is. But I think that to give that ownership back to the participant, they decide on what they want to contribute, what type of data and to whom we we actually going to share it with, then I think it's is a key part here is very much making that responsibility and ownership back into the past. Patrick Short 21:45 I'd love to hear about some of the projects programmes on the horizon for you all that you're really excited about one big area is rare disease. And I know recently there's been a rare disease action plan. One of the things for listeners outside of the UK, this may surprise people that I've talked about a lot on the podcast, the UK is really very organised from a top down level at setting strategic priorities, which growing up in the US we've only done this, I've only seen this in a rare set of cases. But I wonder if you could talk a little bit about the kind of work you all are planning to do in rare diseases. In particular, I'm really interested in some of the work around the newborn screening that we discussed earlier. I know you're you're working closely with genomics England and others on rolling out a programme to test out newborn screening, what are some of the other examples and rare disease that you're excited about? Nathalie Kingston 22:35 So we've got about 60 Rare Diseases projects that are currently actively recruiting for the bioresource. So this is a very small number considering the 1000s of rare diseases out there. But we actually focus on rare diseases recruitment, where there is a research interest or clinician or PIs coming to, to the to the bioresource was asking if actually, we could take on a new cohort for new rare disease. And but we also now working more with charities and also patient groups. So last year, we had a ring 20 patient groups that approached the barrier source, and they were very interested to actually start recruiting ring 20 Oh, just ring chromosome rare disease for some of those ultra rare so you, you wouldn't get so many patients actually just even in the UK. So we are working more with them to try to get a ring chromosome court as well being set up. And then just in the last three, four months, we also collaborated with cystic fibrosis trust, so a charity and to trying to have the whole of the cystic fibrosis patient population in the UK, so even in the developed nation to actually joined the various sorts of trying to actually get all the different registries and charities working together. So this is actually more the patient voice now as opposed to the clinician coming and wanting to have a specific court of patient recruited, it's actually the patients or charities working with patients coming to us to do that. So this is quite exciting for us. Patrick Short 24:17 That's very exciting. And what's what are the main drivers behind that? Are? Are the are the patient organisations you're working with wanting to start to run natural history studies or collect samples that could ultimately be a stepping stone towards clinical clinical trials and drug development programme? Or what are those? What are those kind of projects looking at doing over the long term? Nathalie Kingston 24:41 So as you say, so because we collect a sample and hopefully we get especially for rare diseases, we're trying to have exome or whole genome sequencing on those individuals. So there is actually a good puts possibility to do more stratified personalised. treatment for some individual because actually, we have found that not every treatment will work for every patient with a set condition. So actually, especially for rare diseases, there is a good avenues to explore here. So this is why I think, as well, the link is is being, you know, more broader now with with some charities and patient group because it sees a potential for potentially better understanding of their condition. Patrick Short 25:28 Yeah, I think it's so important to bring all these groups together, you've mentioned industry, patient groups, academic researchers, it's very hard to get everyone in the same room. And I think you all can play start to play that role more and more of being that convening platform where everything comes together, I'd love to hear more about how you interface with industry, because I know you do a lot. And it goes through a pretty rigorous vetting process and access review process, because as you pointed out earlier, can be a sensitive topic for participants that love to hear about how that arm of what you do works and, and the role that you play as that interface between the nationally funded research and, and private industry research. Nathalie Kingston 26:12 So industry gets scrutinised as much, if not more than as the academic or clinician and institution that approached the barrier source. And as you know, yes, it's very sensitive, some participants have very much against contribution to industry, but I think that, in general, you know, UK, industry partners do know what they are doing, they are also struggling in getting new drugs. And you know, on the market, this is actually very costly for them. And sometimes, you know, getting volunteers and passive into their study is quite challenging the some of those industry partners have their own mini court where you know, but in general, it's people who are quite healthy, I think they don't have necessarily a population court with with patients. So if actually, we can offer them maybe some IBD patients or some, you know, immune mediated inflammatory disease patients or rare disease patient. And then actually, for them, it would be very adventurous. What we tried to do with with industry is obviously like everybody knows, they have to put an application that application is considered by a committee that consists of obviously, members of the barishal centres national programme, our funders, key members, and stakeholders around the country. But there is always a contract, you actually have industry partners detailing exactly what they are going to do in terms of numbers, and the samples or tests they will do on participant what data they are going to generate for what purpose and in general, we're always trying to have everything open access as much as possible. And the bioresource doesn't keep any IP. So this is very reassuring for industry partners as well, because whatever they discover is theirs and for their own benefit. But there is quite a lot of scrutiny across the board from, you know, discussing their project to the application being granted. And and again, following to the to the completion of that study. Patrick Short 28:26 It seems to me like just hearing you also talk through the variety of disease areas, you're focused on that a big part of your strategy is around developing really, really deep cohorts within specific disease areas, rather than trying to build an ever large population cohort has, how has that has that been a part of the strategy from the get go? Or how has that come about it? Because there are many other projects, both in the UK and worldwide that are taking a really very different approach this so interested how you think about that, that approach versus to say, for example, we were just going to recruit a million people across the UK. And then after that, we're going to create 2 million and then after that, we're going to recruit 5 million and so on 65 Yes, yes. Actually six. Nathalie Kingston 29:10 Oh, maybe more by now. Yeah. And so I don't think there is necessarily a right or wrong approach. I think for the Brussels we started mainly as a cohort of healthy volunteers, whatever healthy you mean by that everybody has their quirks, right? But actually, we realised that there was a niche for researchers wanted to have access to blood samples or individuals without a specific condition. But we realise also quite quickly, is that industry as well as academic institution, were interested in looking at specific condition, so rare diseases, IBD, etc, and wanted to stratify more, and trying to find actually, why some of their patient didn't respond to a specific treatment. So for example, in IBD, it's very difficult for some patient to be in remission, you know, they suffer from flares quite a lot, and why one does more than the other, then you know, there is obviously, a need for that patient to be in remission, because their quality of life is much better. And important, obviously cost much less to the NHS, but there is an impact on the health, if you can actually manage those condition in a much better way, it might not work with a blanket approach. And then having caught off patient with a specific condition where you can start to say, right, we are interested in only those sub group of patients with a specific genetic component, maybe variant x, because we think it might be linked to getting flares on a regular basis in IBD, whatever, then all these kinds of hypothesis, you can do it much better if you have a dedicated port to study those condition. In your 1 million in your 5 million, you will also have several hundreds, potentially IBD people, because there is so many in the UK, I think it's the bats 500,000 or 300,000 in the UK. But you know, if you have a dedicated code for this, you can do much more for those patients. Patrick Short 31:20 That completely makes sense. And while you're talking through that, I was also thinking about the EU as a whole you, you're from France, as you mentioned earlier, but you've lived in the UK for a long time and deny Trump bio resources a it's a it's a really comprehensive network across the UK. But I'm curious how you all partner with others across the EU. Are there other similar resources in France, Germany, Italy, Spain, and further afield that you all either formally or informally think about linking up with because for many of the rare diseases there, there just aren't enough patients in the UK, that period to do a meaningful analysis in some cases? Nathalie Kingston 32:02 Yeah, we are aware that some countries trying to have cohorts of patients, we have colleagues coming from Switzerland in the past to try and to see what how we actually did set up the barrier source so they could learn from this, I think in some of these Scandinavian countries as well, they are trying to have some courts as well. And it's a bit difficult. So we interact with everyone is difficult to really work very closely with with others outside of, of England, because the NHI is very much dependent of Department of Health and Social Care and NHS England. So it's already quite challenging sometimes to work in the devil of nation, let alone in EU or across the, you know the pond a bit more. And we also have to be mindful about data. So, you know, we collect and generate a lot of data on our participant data security is actually quite top on our agenda. And obviously, if we were to work with, let's see with the US, and maybe their regulation towards data is very different. So uploading massive amounts of data on their servers or cloud might actually not be very suitable for our purposes, we would feel maybe that this would not be as safe. So there is a lot of consideration to do, but we certainly do work as much as possible with with other organisations. Patrick Short 33:30 Yeah. And I think, you know, you've got the still got so so many people to reach in the UK, right, that there's a lot of work to be done here. This this may be a bridge we crossed in, in a few years time. But the I think the core data privacy, the coordinating challenges, the operating challenges seem like it would be very challenging, but I think this is an important role that some of the patient organisations can play in the rare and ultra rare diseases that we discuss, because they they don't have to be confined by, you know, national borders. And so they can serve as that link in many ways between registries that are that are regional. Absolutely. Just to wrap up here where we're close to running out of time, I'd love to just hear about any of the new programmes or technologies that you're really excited about. I think people come to you all the time talking about long reads or linked reads or new kinds of omics assays, what are the some of the one or two things that you're most interested on that may not be on on other people's radar that, that you might be hearing about first store or early before they hit the mainstream? Well, I Nathalie Kingston 34:38 think I think we try to always report any new techniques and and, and platforms. So it's, it's key for us to get as much phenotyping information on our participant, especially for rare diseases. We think that it's actually very complementary to everything that is genomics. So for example, at the minute we have an RNA sequencing platform for some of our Rare Disease projects. So it is actually teknicks. sequencing, trying to do a bit more of omics as well. So proteomics, different platform as well as their to try to combine that together. So, you know, any researchers interested in developing new platform? And if they have an interest in, as I said, either some rare disease or common disease patient that we have, we would certainly consider any new projects and trying to work with them on those. Yes. Patrick Short 35:39 How about sensors, wearable devices? When you mentioned phenotyping? For some reason, my brain went straight there. How are you thinking about those who were getting requests for that kind of work? Yes. Nathalie Kingston 35:49 So we thought about this actually, all those wearable? You know, things? I don't I don't know. And we have talked about it internally. And I think that, you know, we will have to seek out the views of participant members as well. You know, we have a panel or a group for Patsy panels. And bioresource we'll just see how they feel about it. Because obviously, you can't push everybody to wear a, you know, device to actually capture some of the some of their heads a bit like, you know, the the watch or whatever the different people have. But we are actually thinking about this is just about how do you convince us when you're your core, that it's a good thing to do? And then Patrick Short 36:30 when there's some really interesting research that that I think y'all can do, but it is not, not without its its ethical challenges. So you know, we've talked about recall by genotype studies, and there are there are now many, many examples of incompletely penetrant genetic disease. If we took an example of something like Lark to Parkinson's, we know that people who carry the log to G 2019 s, a high fraction of them will go on to develop Parkinson's disease, but many will not. And I've got to imagine that equipping people who have have and don't have that genetic variant with wearable devices, in for a long period of time could lead to some really interesting results. And who are what what do the movement changes look like and people who ultimately do go on to develop or not, but there's a there's a layer of ethical challenge of recontacting, people who may not know they have this genetic variant, you know, that the point you made about that, asking people to wear these devices for really long period of time. So I don't know the answer of how you'd actually run that study. But given given all the work you've done, I think you're going to probably start to get it I'm sure you already do requests like these and have to flick through how do we how do we ethically figure out if it's feasible or not? Nathalie Kingston 37:46 What? Yeah, absolutely. And even now, we have actually some research project, I've actually, by the recall of specific individual, you know, we have some work on Apple II for examples of cognition, etc. And you just feel like, well, people have actually consented to the various tools to contribute to health research. And it's not necessarily for knowing that you're more at risk of developing, you know, cognition, disease condition in the future, or same about, you know, braca genes, you know, I'm sure there are many women in our panel who carry and variant, but say, mannose, that's not why they have joined a band source to learn that there are higher risk to develop, you know, breast cancer, etc. So it's very difficult to know, some people do want to know that they are higher risk, because then they can change their life accordingly. And some people just do not want to know. And and, you know, that is a challenge as well is to respect our participant views on this. And when we have studies where you could actually learn about an outcome that may impact in your, on your health in the future, we have to be very clear in our invite that actually, if you participate in this study, you may actually learn some things about your husband. Patrick Short 39:11 Yes, it's very challenging. And there's, in my mind, there's a there's a whole tier of questions that you have to go through, do, do you want to hear about these kinds of opportunities, then when the opportunity comes, we're not going to just email you and tell you you've got a we were going to ask what you like to opt in to learning whether you have it or not. There's a whole series of steps that you have to go through and really think through it carefully. And it sounds like something you all are doing and we'll see much more of in the next next decade. Well, thank you. I really appreciate you taking the time. It's been a great conversation. Thanks. Thanks so much. And anything else to add or do people want to follow you on Twitter and see your your petrol your petrol head? I think your picture on twitter is you driving some kind of jet or or aeroplane of some sort? Maybe you could tell tell the story behind that. Nathalie Kingston 39:59 Well, yeah, So this is just a tiger boss. I don't do this on a daily basis. No, that's that's true. But there's true that there is some petrolheads in in my blood, I think. But yes, no, it's been lovely speaking to you. Anyone interested in in a bioresource can actually find me and bioresource us on Twitter on LinkedIn. And then obviously if you're interested in joining or asking for some research report, just come and knock on our door. Thanks very much for having me Patrick's information. Absolutely. Patrick Short 40:26 My pleasure. And thanks everyone for listening. As always, if you could please share the episode with a friend if you'd like to. That's the best way for other people to hear about it. You can also leave a review on your favourite podcast player, Apple, Spotify, wherever it is to help other people find us. Thanks again and we'll see you next time.