 I'm Dukas Kamuya. I'm a social scientist here at the Kemuruwakam Task Research Program. I've been in the program for quite a number of years. I have various interests, research interests, and all of them are around medical ethics on complex topics. The one specific one I'm going to talk about is biobanking. The sharing of samples for research purposes. Biobanking is well developed in developed countries. It is an emerging area in developing countries. There is real importance for research in biobanking. And some of the reasons why it has been promoted, for example, is because you can have fast results, turn around of results. You can look, compare samples across different timelines, across different contexts, across different generations, and to know how this is evolved, understand the molecular biology of what was happening in the bodies. There's a lot of scientific value in biobanking. And because it's an emerging area in developing countries, there are a lot of ethical issues. And that is the area that I'm exploring currently. I say complex because not many people know about biobanking. It is unfamiliar even for research institutions, staff who are working in research institutions, and more so for the lay public. When it comes to sharing of samples, there are a lot of values attached to it. There are views and perceptions that need to be considered. And those are the areas that I'm interested in. Some of the issues are ethical issues, and I'll focus on the ethical issues. This is a scientific merit for biobanking. But I'll focus on the ethical issues because obviously that is my work. And there are issues around when samples are stored, and we have the right permissions for those storage who gives the permissions. So this is the biobank itself, the setting up of a biobank. It is an ethical question because you are investing that that money could have been used for research or for other research purposes. So that is where the ethical issues come in. And that question is tied to efficiency of biobanking, but also efficiency of how many biobanks you have to set up in any one country, in any one setting. So there is a huge debate around that. The issues that are more focusing on are issues around, and which have emerged quite a lot, issues around consent. At the time that samples were collected, we used to have very specific consents, specific to the how that sample is going to be used for the purpose of that consent. Over the last 10, 15 years, we have moved what we call broad consent, in which people are giving participants in research, are giving consent for samples to be used for future purposes and specified, and also to be stored indefinitely. Sometimes they can put limitations of how long they can be stored. There has been a lot of questions on whether broad consent is consent. Whether when you give consent for somebody that is not specific, is that consent. So that is becoming both a philosophical debate but also for me more applied what people think about that kind of consent. So that is one. There is a whole area of miners when children, the samples are being collected, when they are children, the parents often give consent if the miners who can give verbal ascent they also do. The current question is and the debate is when they reach maturity, should they be consented to check whether the samples can continue being stored or they can continue being used in bio banking. So that is another issue still very much related to consent. And very much tied to that is the issue of confidentiality. When samples are shared, we say they are shared with what you call anonymized. So if you share some with no data it's not very helpful scientifically. There is some data that has got to be attached. When you attach some data it's very likely that very people who know how to hack the systems they can hack and get to know the individuals who are involved in studies. So how do we save guard and how do we put limits to confidentiality? Do people have the right to withdraw their samples from being shared? So that is all on consent and permissions. Who else needs to give permissions for bio banking to happen? Is it enough for the individuals? And often they say the research regulatory committees needs to come in place. But we know historically and up to now inadequacies in ethics review committees they have such a strong focus on the individual yet bio banking opens up to what you call open science where it is not about the individual. The individual is important but it's not the primary focus. The primary focus is on how within sharing platforms data can be used for scientific value. And that is a completely different ethical thinking ethical framework from what currently has been in place. And that is why my work is feeding on that. Because it's not just about listening to the people but also critiquing the ethical frameworks that are in place and finding what can we do for bio banking because it doesn't completely suit. The current frameworks don't currently suit. A huge area that is coming up and especially now with bio banking in low and middle income countries issues of benefit sharing issues of ensuring that developing countries don't become the sample suppliers without themselves having the intellectual and scientific capacity to ask questions that are important for this region and use those samples from anywhere in the world to answer those questions. That is a huge area of debate. How do we measure that bio banking doesn't increase the existing equity between developing and developing countries? And that brings into mind how samples are shared who is sharing for what reasons why are samples being requested for what questions, research questions are they going to address who is going to benefit when the answer is found. So there's a lot of ethical issues I'm just touching on some of them. Why should people invest in bio banking? I will probably turn that a little bit and ask why should people invest in the ethics of bio banking? And there are many reasons I've already talked about some of those why bio bank is important but the specific work that I'm looking at I've talked about all the ethical issues that we are dealing with. I think every community member who is contributing a sample has got a say on how that sample should be used. If researchers go ahead and use samples without getting proper permissions from those who contributed the samples there is going to be great implications negative implications for science and for research. The work is looking at what are the community perceptions about bio banking. Those perceptions can feed into policies, into guidelines into ethical frameworks and that's what I'm interested in strengthening making sure the voices of those who where the samples come from have got a huge contribution on how bio banking pans out in the next 2500 years to come.