 Hi everyone. Welcome to the NHGRI H3Africa DNA Day Speaker webinar. My name is Jennifer Troyer. I'm a program director at the National Human Genome Research Institute here at the National Institutes of Health in the United States. I see we have people joining from all over, so thank you very much. Good morning and good afternoon and good evening depending on where you're from. So we're very pleased to have you all here for this DNA Day event here in the U.S. DNA Day is officially April 25th, but at the Human Genome Research Institute, given our interests in genomes, we celebrate for several months and are really happy to think about and celebrate the ways in which genomics can mobilize, energize, and empower communities. We like to engage educators, students to think about innovative and collaborative ways to really discover the way in which genomics helps us realize the promise of our shared humanity and also our connection to the natural world. So as part of this, we have been for the last three years having joint DNA Day events between NHGRI and H3Africa. So I'll tell you a little bit about H3Africa for those of you who don't know human heredity and health in Africa is an initiative that's been ongoing for the last 10 years and is sort of in its final wrapping up stage, 10 years of enabling genomics in Africa. It is a joint effort between African scientists, the NIH, the Wellcome Trust, and the Science for Africa Foundation and has really been about building capacity in terms of human capacity, in terms of infrastructure, and also collaborations throughout Africa to ensure that there is participation and benefit to African communities in genomics research. And so the projects, there are 51 overall, and some of them are our training, some of them are research, some of them involve ethical, legal, and social education research, which brings me to our speaker today. I'm very pleased to introduce Dr. Changui Sintia Manu. She's a research fellow at the Faculty of Health Sciences Cape Town in South Africa. And her work really has been involved in exploring issues of justice, fairness, equity and genomics, global health, infectious disease control, and the use of emerging biotechnologies in sub-Saharan Africa. So we're very excited to hear from her today. Without further ado, I will turn it over to our speaker. Changui, take it away. Thanks, Jennifer, and for the very nice introduction. Much of what I will speak on today comes from the work I did for the H3Africa Fellowship. So it is a real pleasure to speak at this NHGRI H3Africa webinar in celebration of a DNA day. So big thanks also to the organizers for giving me this platform and to all webinar attendees. Good morning, good afternoon, or good evening wherever you are. And thank you for making time to join us. So I will start this presentation with this extract from the article, A Vision for the Future of Genomics Research. It is authored by Dr. Collins Francis and colleagues. And it is just sort of important for me to put this up because when I started my postgraduate training as an H3Africa bioethics fellow, it was one of the few prison articles that I looked up to several times for direction on my research focus. And also because I've heard many people talk about the genomic revolution and precision medicine. And to me, I kept on wondering what that meant for people in Africa and if it was a reality or just another dream. So I think my perception of that has changed now over time. So for this presentation, I want to focus on this popular pillar just close to the tree there that has the label of LC. So that's ethical, legal and social implications for genomics research. So I don't know if the authors deliberately put that pillar very high up there, but for me, I think it's important that it is a very tall pillar sort of signaling the importance of mainstreaming ethical issues in genomics research and all genomics initiatives more broadly. So further to this article, the NHGRI has the ethical issues as a grand challenge in genomics, and they can be grouped into four broad categories. So the first is on social and cultural values, which is about what are our values and belief systems regarding genes or genetics or genomics, what our understanding of use of data. The second category is around genomics at the institutional and systems level, forcing us to look at issues around priorities, social justice, equitable collaborations. The third category is about research design and implementation, and they want to sort of look at what are stakeholder responsibilities, how do we ensure access to data and genomics technology, and ensure that genetics research is community driven. Then the fourth pillar there on genomics healthcare, sort of thinking about ethics in the translation of genomics research, its application, and they look at issues around equity in access and what are the priorities for each population group. So if you look at all these different ethical issues, I think what is common for me across board is that there is the importance to center equity in how we do genetics or genomics research across these four levels. So but in summary, what are some of the ethical issues that come up from those four categories that I just presented. So the first is the realization of lack of diversity, there's some population groups that have not been included in genetics research, and there is the fear that they may not benefit from genetics, especially when it comes to the translation stage. There are issues around global health inequities. So will genomics actually address the global health inequities that we have and a core issue that has come up there is the issue of access mainly in terms of cost and coverage. There are issues around ownership of genetic data, who owns genetic data, and that discussion is moving more towards to achieve then there are issues around research and development for genetics on intellectual property rights, benefit sharing, then you have stigma privacy and then consent models, which consent models are more appropriate. So and they are very different consent models that have been proposed. There is broad consent, tiered consent, dynamic consent and others. And so then the question there is which is more appropriate. So I just have a screenshot also of a second article like the first which I found very useful to fall back on in terms of thinking about how equity needs to be centered in genomics research. And so if you look at all the ethical issues and just reflect on what is it that is the core issue. So it's not the issues of autonomy and all are important. But when you think through I think a broader theme is around equity. And it is about saying that how do we achieve equity or how do we advance the ideals of equity when we do genomics research or when or implement genomics across work from translation right to the bedside. And so it's about thinking of equity in three broad areas. The first is health equity. Then there is science equity. And a key point is around including the public voice in the use of genetic data and the implementation of genomics. So I just have also on the slide a screenshot of some of our work on how we actually advance the ideals of equity in genetics research much more from an African perspective. And so with the H3Africa initiative they've done so much work around how these different ethical issues could be approached in genetics research in Africa. And one way they taught about these ethical issues especially in relation to equity is about designing governance models that address these different ethical issues. So you see some of the ethical issues that H3Africa sort of address in the governance framework. Issues around leadership, African intellectual leadership for genomics research in Africa. Issues around consent, community engagement, benefit sharing and all. This governance framework proposed by the H3Africa initiative specifically the ethics, legal and social implications work group of the H3Africa. In the development of that framework what came forward most strongly is how do we get an African world view? How do we get a framework that is informed by African values that is centered around communal values that is at the forefront of most that will guide action that guides the everyday life of people on the African continent. And so they came up with a framework that is which the core foundation of that framework was solidarity, reciprocity and consultation. So building on the development of that framework. So as I mentioned before one of the issues that came up in the development of that framework was could we have an African world view that could inform equity oriented governance of genomics research especially in the African setting. And going to an African philosophy or an African world view if you prepare came up strongly as a philosophy or a world view or view that could inform equity oriented governance of genomics. And so we did a conceptual analysis of the Ubuntu philosophy to see what is it about that philosophy that we could learn from if we want to advance the ideals of equity in genomics research in Africa. So on this slide I just have some of the principles that came up from the Ubuntu philosophy following that conceptual analysis. The principles of solidarity, reciprocity, deliberative decision making, inclusivity, the importance of mutual trust and accountability. And I just want to emphasize that in all of these that the key message is for us to recognize our interconnectedness that is based on shared values and standards and the importance of sharing resources for the benefit of all especially for worse of populations. We then moved forward to compare or to do a comparative analysis of Ubuntu and two theories of global health justice. This was important because Ubuntu as an African world view is not necessarily directed at global health or health. It's a philosophy that just informs the way of life of people in Sub-Saharan Africa. So wanted to see how those principles that we identified actually speak to issues around health and health research. So we did a comparative analysis of Ubuntu and two theories of global health justice. So those two theories were shared health governance and global governance of health. And so this slide just shows some of the principles. Again you see solidarity, reciprocity, mutual trust coming up and then you have shared responsibility and the importance of furthering the ideals of health justice which when we compare it's more around solidarity. And I will come back to this slide towards the end of this presentation. So I just want to talk on some of the principles that I think are important for this talk and also because of time I can go through all these principles. So a first principle from that conceptual analysis of Ubuntu and the two theories of global health justice is shared responsibility. And it is basically asking us to reflect on our own equity-oriented responsibilities. It is to say do we have defined equity-oriented goals and outcomes? And do all stakeholders have a common understanding of these equity-oriented goals? And the point here is that if the different stakeholders do not have a common understanding of via on equity-oriented goals, then it is hard to foster equity in genetics or genomics initiatives. And so by stakeholders here I'm referring to very different groups like researchers, health care workers, funders, policymakers and the public generally. So are the funders actually thinking and do they have a common understanding of what are via on equity-oriented goals? So it's ensuring that genomics benefits all populations around the world, especially worse off populations. The researchers have, what as a researcher do we, when we design and implement our research projects, what are we thinking our own equity-oriented responsibilities? And as the general properly or as a patient, when I'm approached to be part of a research study, what comes to mind when I think about my own equity-oriented responsibility? What do I need to do to ensure that genomics is of benefit to all populations around the world, especially worse off populations that may struggle to access the benefits of genetics? And this slide, nothing specific besides just to showcase what for example would be the equity-oriented responsibility of one stakeholder group. And the stakeholder group I've chosen here on purpose is African researchers. So as an African researcher, for example, or as an African or as a researcher in and that belongs or that does work with a minority group or population in any way in the world. When you design your own study, what are your equity-oriented responsibilities? And these are some of the things to think about. It's about saying, when you design your study, what are the priorities? Is that study actually answering a burning health problem in your study setting? It's about thinking of shared decision-making. How are you engaging with your study community? Are you doing that in a very meaningful way? Do you see them as partners? How are they contributing to the work you do? It's also about thinking of shared resources. So it's thinking about the data that you generate. How are you ensuring that that data is being used to advance health equity or to advance science equity across the world? How are you thinking about building capacity in your setting? And how are you thinking about benefits sharing and intellectual property? And I think this last point is important because at the end of the day, it will inform how populations are able to access the benefits of genomics or genetics. And I think that it has become very clearer with COVID-19 and vaccines and even with the new trial drugs. The second principle I'd love to talk about today is furthering the ideals of health justice. And the question is, will genomics translate to health benefits for study populations across the world? And the emphasis again is on worth of populations. And it's just about thinking what are our priorities for our study communities? What is more important? How would genomics make more impact in that setting? And in terms of research and translation as well. And again, this is another example for genetics in Africa. And what could we think of as priorities? So I have four blocks here. What would be, for example, the priorities for genetics and genomics research in Africa? I think, for example, to look at the disease burden. What is the disease burden in Africa? It's to reflect on the cost-benefit ratio or where the genomics have maximum impact of benefits. And I know that it's difficult to say where, but it is something that as researchers or as different stakeholders, we need to constantly reflect on. Then there are issues around human and infrastructural capacity for genetics. And this is both across continents, so that's globally and even within our own countries. How are we ensuring that capacity building across that low one place is getting more than the others and others are left behind? How are we able to harness the benefits of genetics research? Then it's about thinking of knowledge generation and translation. Are we training personnel across board, not just for research, but at the bedside? So are we ensuring that we are training medical geneticists, genetic counselors, in addition to the genetic researchers that we are training such that we can move from research to bedside very seamlessly? And the last blog, I think it's very important, is about thinking of how are we engaging the public? What's the level of awareness of genetics and genomics and the general public? Are they making significant contributions? And this is not just about community engagement. It's about saying what is their input to our own research or the genomics initiatives that we develop. The third principle I'd love to talk about is shared resources. And I think it's really, really important that we look at how we pre-tably distribute resources, because if we do not think about it, then we inevitably widen inequities. And what are these resources? They're very different. It could be genetic data that has been generated. And it's thinking about our data sharing attitude and practices. What is stopping us from sharing data? And how long do we keep data? So I know that there is a lot of discussion around that and why people may be unwilling to share and all of that. But we really need to think that at the end of the day, how do we do it in a way that benefits the person on the street? Or was of populations sitting somewhere hoping that this work brings them some health benefits? It's about thinking of our intellectual property models. Are we going for models that will allow people to be able to access genomic technologies, especially at affordable prices? It is about looking at benefit sharing mechanisms. And I think throughout, I've been talking about the importance of engaging participants in genetics and genomics research. And I think what we are learning so far is that the patient or the public, broadly, wants to be seen as an equitable partner. And what does that mean? So I think that what we are learning is that the patients and the public would love to contribute to priority setting. They want to have an input into how their data is being used. They want to hear about genetic results or the results of genetic research. And they also want to be able to access innovations that arise as a result of the use of their genetic data. So we should, going forward, be able to think of models of engaging the public as an equitable partner in genetics initiatives. I'm not sure I'm going to do any time, but I just wanted to look at an example of how we could advance the ideals of global equity or science and health equity in genetics. And I'm putting an example here for tuberculosis, which is a disease with a very high burden in sub-Saharan Africa and even within, even in high-income countries. It's a disease that's very common in the worst of populations. And how advances in genomics really inform in TBK and have populations in Africa with that experience a high burden of TB able to access genomic technologies for their TBK. And so we want to look at health systems strengthening for TBGynamics. Are we doing good at that? How are we sharing genetic data? What are the benefits sharing guidelines and intellectual property models that will support low-cost innovation for TBGynamics? What are the policies for sharing pathogen genomics data? And how is that sort of informing or impact on advances in TBGynamics for populations in sub-Saharan Africa or worse of populations more broadly? The second and last example is on here. I think I messed up with my slide, sorry. I was talking about the sickle cell disease and global equity and what that will mean. And it's about looking at access to genetic therapies. Is that how are we faring in terms of access to novel therapies for sickle cell disease, novel genetic therapies for sickle cell disease, both in terms of research and when it gets to the clinical trial level and also when it is available. Also there is the issue of the workforce diversity in terms of care for patients or persons with sickle cell disease and how are we engaging the public more broadly. So I'm back to this slide. I hope this is working. So I'm back to the slide again, which is about a reflection of our equity-oriented responsibility. So what should that lens look like? So irrespective of what stakeholder group you belong to, it's about thinking what in your own activities, how are you furthering the ideals of health justice? How are you ensuring that there's shared decision-making? How are you ensuring that there is accountability, there is transparency and mutual trust? So much of what I've presented today, it's a joint work and I would thank those who have mentored me all through. In the slide, I thank many times to the National Human Genome Research Institute and H3Africa for inviting me to give this talk. And thank you for listening. Okay. Thank you so, so much for a very interesting presentation, Dr. Changri. I have so many questions myself, but I think I'm going to give people time to digest what you're just presenting, but also to tap the questions in the Q&A box, and then I'll fill them to you. I think it's a very timeous presentation. We do need these conversations, especially trying to transform and radically change the genomics research, not just in Africa, but globally as well. So we do need African representation. I think I'll start with a few things to sort of ask you, because I think it's all in my mind, but I hope I'm going to make a bit of sense. You kept them using a word equity. And in my mind, I'm thinking, okay, some people use it interchangeably with equality, and I just wanted to sort of touch on that in terms of science and health research, genomics sort of research. What's the difference or similarities between the concept of equity and equality as well? Thank you. Great. So I think that if I use the example of resources, so if you think of equality, it's about sharing the same, giving equally. So in that sense, then someone who has access to more resources, if you share it equally, then you simply take them to a higher level, right? So you do not address the issue. But if you say, yes, this person has more resources than this person, so I give the person with lesser resources more so that they gradually get to the level of the person who has more resources, then that is equity. So you're really just trying to say, I'm taking someone from the WhatsApp level to a certain level where they can be able to compete with those who already have more resources. Thank you. Thank you so much for those answers. And there's questions that are coming up. I'm going to read them to you now. There's one question from Ali. We're saying, thank you so much for your talk. You mentioned the importance of understanding multiple stakeholders' equity-oriented goals. How can stakeholders work to better understand one another and hold one another accountable? Thanks Ali. That's a difficult question. But I think it will be, if they need to work together, there are two things. The first is about building trust and which is something I've always found difficult to talk about. Like, what does it really mean to build trust or foster trust? But we know that it is important. But I think what is key is for working together towards your equity-oriented goal is shared decision making. And by shared decision making, I think two things, it's not just saying we brought you to the table. It's about inclusivity. It's about qualitative equality. So it is about saying whose voice is there? Whose voice are you bringing to the table? Are we bringing the same voices? Are we bringing voices from populations that have not been represented in these discussions? And if we are doing it, are their voices actually informing policy? Or are we just ticking another box? So I think they can only work the best way to work together towards achieving their equity-oriented goals is actually adopting a shared decision model. But that shared decision model must be informed by inclusivity. It must be informed by willing suspension of disagreements. It must be informed by qualitative equality. So making sure that different voices come on board, not the same voices all the time. Okay. Thank you so much for that answer, Dr. Chan-Gui. There's a question from the audience. This one is anonymous. And they're asking, are DNA companies who provide limited genetic testing a part of this conversation? Yes. So I think that is a key stakeholder group. And in the African context, I'll speak in the African context. I think commercial companies will shy away quite much or have not really engaged commercial entities in discussions around genetics and genomics, mainly in relation to what are their own equity-oriented responsibilities. But they are very key stakeholder groups, especially if you think of it as their key to translation of research from the bench to the bedside. And so we must be able to engage them. And I see them coming through around issues of intellectual property, around issues of cost, so that everyone is able to access it at an affordable rate and what other area would it be. So they're key stakeholder group that should be engaged, but have really not been involved in these discussions on equity and genetics research, especially in the African continent. Okay. Thank you so much for that. I think there's a question now from Rosanne, which speaks about Ubuntu, which is something that I also wanted to ask on as well. Rosanne says, thank you for your talk. From your perspective, are there any countries with genomic governance frameworks that successfully incorporate aspects of Ubuntu principles currently that can serve as models going forward? Great. I think that many African countries, their policies tend to sort of be centered around principles of Ubuntu, like solidarity. But for genetics, the South African Human Genetics Initiative, I'm not sure precisely, but actually talked about, actually published an article on the governance of genetics research in Southern Africa, Southern Africa more broadly, and how they would love to see genetics research going forward. And Ubuntu was one of the things that they mentioned strongly in that article, including, so they talked about principles like solidarity and how our interrelatedness is important and seeing how we move through genetics. But in terms of national policies, no. But there's also the issue that many African countries do not have specific policies on genomics or even health research broadly. So there is that gap. So Mohammed Gibral in the Q&A is asking, I don't quote, access for genomic technology for affordable prices at an inverted commons. So I think this is a goal. What would be the best measures to achieve this goal? Okay. Thanks Pavado and Gibral. So I think it would be about thinking of what intellectual property models will be better. So what patents are we going for and all of that. It should be models that really allow for the development of low-cost innovation. And I think, again, it's thinking about, we could learn from COVID vaccines how some intellectual property models actually prevented people in lower middle-income countries to be able to access vaccines. And it's taken a lot of advocacy for that to happen. So basically thinking about our IP models. And I think South Africa also has much story around that for access to ARV therapies where intellectual property models that do not support low-cost innovation or production can actually prevent access to essential therapies or new innovations for people in resource-poor settings. And there's a question now from Godfrey Tangwa. Regarding sharing an equity, how is this to be ensured in Africa for externally funded profit-based research? Okay. Thanks Tangwa. It's also good to know that he's on the call because he's one of the people that has really informed my own thinking of ethical issues in genetics research and health research. So thanks for Tangwa for attending this talk. And as usual, you ask a difficult question. How do we ensure that we advance equity if we have externally funded profit-based research? And again, I think it's about shared decision-making and also about African researchers really reflecting on their own responsibilities, especially when they sit on the table with funders, when they are in those meetings. To be able to say to the funders, listen, we know that you are bringing in these resources, but these are the needs for corporations in Africa. And I think that happens sort of within H3 Africa. We've really seen some progress in that area that many initiatives can learn from. And I think I would leave that responsibility to African researchers. They should be able, when they sit on this decision-making tables, to be able to say, this is what we need at the level of the continent. This is what our people need. This is what my study community needs. Can you then direct resources or the funding towards this specific priority? Because that is what is needed at this time. But also, again, I mentioned the willing suspension of disagreement for the funders also to be able to say, yes, we are listening, we hear you, and we are able to make these changes to accommodate that for the benefit of populations in Africa. Thank you so much for that. We still have time for questions. So please do type in the Q&A. There's a question. Could you speak more about partnering with communities? In terms of the questions we ask, at various stages of the scientific process, that's from Ali. Okay. Thanks, Ali. So I think in the past two years or so, it is one of the things that I've struggled with and that we have been trying to address as part of the Cycle Africa Data Coordinating Center is to really say, what does it mean to engage the community or the public as partners in research? Because I think generally we have focused on community engagement, which is very, very important. But is that sufficient? So I think I do not have a direct answer to that question. But increasingly, we've seen patient support groups actually want informing priorities for research consortium. Being able to voice out to say, no, we want to be able to see research on this because you have been collecting data. We always see you here requesting to do research, asking us to be participants. But we've never had, we've never sort of know what you're doing, what are the outcomes. But could you sort of look at what a gene therapy, for example, because we are interested in gene therapy, love to hear some research around gene therapy. So that's informing priorities. I think increasingly also, people want to inform how they want to voice and how their data is being used. But we need to identify models. And so one of our new projects, public engagement in big data and genomic medicine, PubGem Africa, we'll be looking at what are some of these ways of effectively engaging the community or the public as partners. And we hope that we are able to make some progress in that area. Thank you. There's a quick question from the audience. Are you familiar with the book named Medical Apatite by Harriet A. Washington? If so, can you comment on it? Sorry to disappoint. I don't. I think we should both jot it down to find because I think it sounds interesting. I also don't know the book. And I think I'm going to jot it down to read later on to see what it's about. But it sounds relevant to your presentation. Thank you so much to the audience member who sat just like that. But Pablo, could you just drop an email with the title of that book as well? Yes, I'll save it while I'm... Yeah. So now there's a question from Jennifer. It's a very loaded question. It's quite long, so I hope you're ready. Jennifer's asking, can you please talk a bit more about benefit sharing? What are the benefits of genomic research? How do you value and share knowledge even when... How do you value and share knowledge even when there is no product of financial gain? And lastly, what about when there is a discovery of course, but no affordable treatment available? So that's a bit loaded, but please have a break it down. Okay. So sorry, Father. I think benefit sharing almost seems like a very contentious or at least a very difficult ethical issue in genetics that we keep on going round and round about it. And it's just really difficult to find exact solutions to the issue benefit sharing. But I think from some of the qualitative research work we did on the H3 Africa, so we actually did some work on benefit sharing for genetics and genomics research in Africa where we're asking genetic researchers, what do you think of benefit sharing? And what do you consider to be benefits? So the answers were really, really diverse, but there are different types of benefits that came up from that study. There was people thought of capacity building as a benefit, people thought of employment as a benefit, people thought of giving social amenities to communities. So sometimes like how is that research could that research support that community with maybe a health center as a benefit? But there was also the issue of profits. So I think one of the things that came up strongly was that no one actually shied away from talking about the importance of sharing the profits that may arise from the use of genetic data within a particular community or what that means. So irrespective of what we think of as benefits, I think the first thing is we should be able to share information with communities, with our study communities. I think that's the very least we can do and sometimes we think that it is not important, but I think from studies that are coming up that is really a key thing. So it's just going back and saying you remember we did this study on sickle cell disease, we did this study on tuberculosis, this is what we found. So it may not change practice now, but we are coming back and it's also about respect for communities. So even when there's no financial gain, we should be able to do that. Then there is also the issue of capacity building. I think what is left from like the H3 Africa project, many people in terms of the next of training, the researchers that have been trained, the infrastructure that has been developed, many people consider that as a benefit. So there is no financial gain on that, but that's a benefit. And what about when there is a discovery, of course, but no affordable treatment available. So I think it will still be going back to the community to say this is what we found, but we need to really engage them meaningfully. So that goes back to Alice's question of how do you engage the communities? What are the models that are available? And I think in the coming years it will be important for genomics initiatives to actually think about meaningful public engagement on the use of genetic data. Thank you so much. We have about 12 minutes left and questions are coming up now, but it's fine. We still have a bit of time. There's a question from Kiddies Baborsha, and it goes, thank you, Cynthia, for the last presentation. One of the areas that needs focus, as you mentioned, is public awareness about genomics. Do you think there's an improvement in Africa? Thanks, Kiddies. I think I also just want to mention, because I see Professor Makani also there. So thanks to all of them. I think these are people that have really informed my work and supported me across this journey. So it's good to also see that they are here to listen. So in terms of public awareness for genomics, it's really the big issue. And I think that the focus should be in that area from now onwards. Is there improvement in Africa? I'm not so sure. I don't think there's much improvement. But I think the good news is that the funding initiatives are now willing to support that kind of activity. So I mentioned POPGEM Africa, which is a DSI Africa initiative. And DSI Africa is funded by the US National Institute of Health. And so POPGEM Africa, it's about public engagement in genomics medicine in Africa. And that project will basically be saying, what is the best way to engage the public? What does the public want to know? And how do we do it in a way that is respectful? And then there is also some improvement, I think, within the SQL in Africa initiative. I think I've learned much from them also about your public awareness. But they have focused more on patient support groups. So it's organized communities, where they're saying that we see you as partners. Right? We want to raise awareness about the things we do for sickle cell disease advances, both in terms of genetics and sickle cell disease care. But that's an organized community. But again, there is still the question of how do we equitably engage them as partners? Are we sure that that public awareness is going through? And I think some work is ongoing in that light. Then there is the general public, which is really big. And then you're saying, how do we do that kind of awareness in a way that is meaningful and impactful? But I think in the next five years, we are going to make progress. That is the good news. And hopefully things will change and we'll see much more of a public voice in genetics or genomics initiatives. There's another question from Professor Julie Makani. Shout out to her as well. Greetings. Excellent talk, Dr. Changun. Please, may you comment on investment by countries as well as global agencies? World Bank, Ace, West Africa, Ghana, Nigeria, and investment by countries, for example, in Borne Mero, transplant in Nigeria, Tanzania, and South Africa, critical for gene and cell therapy. So could you comment on those investments? Thanks. I almost want to send that question back to Prof Makani, because I think she's the best person to answer that question. It's not an area of familiar width. But I think that I've seen some Borne Mero transplant initiatives in Tanzania and South Africa. There is very little investment. I think we need to be honest on gene therapy in Africa. And I think that going forward, that needs to be some investment. And by investment here, I'm not talking only about financial investment. I think we need to see more research on gene therapy in Africa about how the World Bank and other funders are investing. I really do not know. But Prof Makani is in the best position to talk more on that. Okay. Thank you. I don't know if Dr. Makani would want to answer now or she can type in the Q&A and then I can paste it for everybody. But just quickly, there's a question also. Do you have any advice for the next generation genomics workforce as to pursue this field of research? Thanks. I think my first advice would be to democratize science. So democratize genomics. And that really means that... So it's not just about opening up to different stakeholders, the groups. It's about letting everyone have a voice in an equitable manner. So there is about having a voice and it's about having a voice in priority setting. So I think that the next generation of genomics workforce should be able to sit and say, what are the priorities for genomics in my setting, in my study community? Where will there be more impact? The second thing for the genomics workforce is to be able to see how do we start moving towards, especially in the African context, moving towards the application of translation of genomics research. Then there is also, I think where there is a gap. I think in Africa, I think I'll just draw my examples from the Sub-Saharan Africa is the healthcare workers. How do we have healthcare workers that have a good knowledge and awareness of genomics? And so we're thinking of the medical doctors, we're thinking of the nurses. Do we have medical geneticists, for example? Do we have genetic counselors? I think some investment needs to go into that. We need to see more healthcare workers actually taking interest in genetics and institutions in Africa actually opening up spaces for training in genetics for medical practitioners. So I think I'm looking at the time and I'm very careful to not go over time because I understand people are coming from different parts of the world and have other meetings as well. But I think we can go on listening for another hour because people are still wanting to ask questions. But I just want to highlight the fact that there are several people who are standing in gratitude, grateful for this talk, and just complimenting you for really a brilliant and phenomenal talk. So thank you so much, Dr. Antangu. We appreciate it. My question though quickly floated in before we go. You spoke about equitable partners and how patients and participants want to be seen as contributing or co-sort of producing the research in genomics. And in my mind, in my very pessimistic mind, in understanding how research and science have a very painful history, but inherent power dynamics of research investors' participants. So how do we powerfully and meaningfully include and make sure that people are actually equitable partners, not just in words, not just in pretending that it's all kumbaya and it's all perfect, but we actually do the shadow and groundwork of making sure that people are part of the processes and the research that we produce. Right. I think the first thing is not making assumptions about our study communities or the public generally, not making assumptions about what they know about research. And so the first thing is actually reaching out to the public or to patient support groups like those who have been taking part in research and just asking them the simple question, we want you to be a partner. How do you want us to engage you? What is it you want to contribute to this process? And we haven't asked that question yet. And so we can't assume that this would be the best way until we hear from them. And again, that's about democratizing science, right? It's about saying, you tell me, how would you want to be a partner? And then me listening to say, okay, I hear you, this is how we go ahead forward. So it's about co-creating what model would work, not about one stakeholder group sitting there and saying, this is how public engagement works. I'm going to need, thank you so much for telling me. I don't know if there's about two minutes left. I don't know if there's anything before I make an announcement. I don't know if you have anything else to say lastly before I draw everything to your clothes. Now, I think it's really just to thank the NHGRI and H3Africa for inviting me to give this but a big shout out to all those who attended this webinar. I really, really appreciate that. Thanks, Jennifer, Ali, Roseanne, and all of you that helped me work through this, prepare for this. And also to thank the people that have mentored me all through the career in bioethics. And I see some of them on this call. So a big shout out to them and to my research team because I know some of them are attending. So thank you to everyone. That's what I want to say. Thank you so much for that time. We just to join you in, I saw in the attendees list that there are people that I know and they're part of your team. And it made me beam with pride and knowing that you have such support. Just to also echo your thank yous to NHGRI and to the team in the background. They know themselves. I'm not going to mention by name, but I just want to say thank you so much. This was really interesting and I can't wait for the recording to be released. Just to say people can email you if they want to get in touch. They can follow you on Twitter at Sinti Mama. Just because she engages professionally, you can follow her. But just quickly before we close, we have about a minute left. This was the first of the joined webinar between NHGRI and NHGRI. And I just want to kindly ask you and inform you that we are going to have a second one, which is going to take place still this month as well. Please look at the slide. So please join NHGRI, H2Africa for the second and final presentation, which is going to be held on Friday, April the 22nd of in 2022 for like a week from now. And it's going to be at 9am EDT or Eastern Daylight Time. And it's going to be presented by Dr. Jose Hamdi, who is based in Tunisia or Institut Tunis, Institut Pasadena Tunis in Tunisia. And she's going to be speaking on genome-tunisia collaborative alliance, building population-specific reference genomes for precision medicine implementation in North Africa. Similar to this one, please do register. There's a link now that Rosanne kindly shared in the chat. Please go ahead and click on that link and register. Make sure that you can remind us, make sure that it's in your calendar, and we're going to continue to talk about DNA Day, which initially started as a national day, but now it's becoming much more international. Thank you to all of you for joining us and making DNA Day International. Enjoy the rest of your day, everybody, and see you next week, Friday, for a different talk that's going to be moderated by Dr. Rolando Giles from H2Africa as well. Thank you so much, everybody. Enjoy your day.