Wenderson de Lima

Wenderson de Lima
Doctoral researcher in economics
Biography:

Stockholm Business School, Sweden

What NGOs can do. A story between Brazil and Sweden

Modern age brought with it innovations into every aspect of our lives. We use technology to connect, to learn, and of course, to help other people. The problem is, we usually ask the people who help, not the people who receive help, just what is needed. Wenderson De Lima, from the Stockholm business school, wants to understand the real needs of ordinary people. His aim is to create spaces in which the people who are being “helped,” can feel they are able to talk openly about their problems.

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Wenderson: My name is Wenderson de Lima. I am a doctoral researcher at the business school in Stockholm.

Nerina: What is the topic of your dissertation?

Wenderson: The topic of my dissertation is humanitarian innovations and entrepreneurship in developing countries and I am accessing a little bit of the innovations that are being developed in Europe, Stockholm and I’m following them from development to implementation in developing countries.

Nerina: What are the most relevant questions you would like to address? 

Wenderson: There is a growth of technologies for helping people and we want to know how these technologies are perceived by those who develop them and those who receive them. I mean usually in the media what you hear is the interpretation of those who develop, the interpretation of the entrepreneurs but we want to hear as well the accounts coming from people who are at the receiving end of those technologies. That’s what my research is dealing with.

Nerina: What is peculiar about this sector?

Wenderson: In our markets, I mean in the societies where the markets is the main provider as consumer you have a vote and you have a voice. Every time you buy a product you have your vote and your voice heard when you purchase that product and many are dealing with that people receiving humanitarian innovations. You know, that we relation between consumer and a business it’s kind of fragmented by people who fund those products having in mind that many of the consumers cannot really out of their pockets pay for those products then you have a part actually paying for those products. And then this is a relationship that is more complicated than actually consumer and then business relation.

Nerina: What do you think we should change in this relationship?

Wenderson: I think it’s easier said than done but I think that we should… I mean when I say we I talk about the people who are coming from this part of the world we should question our taking for granted assumptions about what people need. You should try to create new links to try to understand the people you’re trying to help. I think that we should give a lot more attention to what’s going on in local context because there’s a big risk that we are losing that. We are losing the connection to what people on the ground in the local context are really trying to do with their lives.

Nerina: How can we do it?

Wenderson: I think first of all is that we could create spaces where people that are being “helped” they can feel they can openly talk about what they need. Because if you do not create that space where people can actually tell you what they want, what they need then you from the beginning you may create a product that is useless for them. I in the quality of an ex-slum dweller I understand how difficult it may feel to actually openly talk about your needs to people coming from outside and that is a big, big obstacle to helping people because people like me who live in these areas favelas usually tend to assume that no one will ever understand us so, therefore, you kind of do not share much of your reality to people who do not face the same problems. So that’s also a big issue.

Now I’m generalizing but a lot of people face the problem of not feeling safe to tell what they want, they do not feel not only hurt but they feel like I will tell what but who is going to care about that. That’s something I think is a consequence of a structural discrimination of the people living in these areas.

Nerina: What should we pay more attention to, in your opinion? 

Wenderson: I think what we should pay attention to is what exactly people in these areas, people living in areas where poverty is extreme what they say about their own solutions, what is that they want. Because I mean it’s not new. In the aid industry everybody knows that because these people they do not finance their own products, they tend to lose voice when NGOs design the help they give for people in that situation. I think the biggest challenge is actually getting access to the stories of the people who are to some extent receiving help in these countries, in developing countries. You have to be able to see your attempt to help other people as a learning process, not as a one size fits all, but also we should be careful to not exaggerate the ability of innovations to help people because there are a lot of political issues that have to be addressed as well. We should not forget why people are in need, we should not actually forget about the political aspects of each and every problem we are trying to address and they are all around them. You see that with the refugees now, all kinds of slum people, living in the slums as well. I mean how are we supposed to address these issues without touching upon political issues?

Nerina: How was your personal experience? What do you remember from your childhood? 

Wenderson: I think that what I saw during my time as a child  I don’t know if you remember what was going in the 80’s and 90’s in Brazil. The 80’s probably here in Europe you’ve seen in the news how Brazilian kids living in the streets were being shot by death squads and so on. We had those types of problems going on in Brazil and for me we had a single but big NGO around close to where I lived, close to the favela where I lived and I remember that one of the biggest things during that time was the notion of our cultural identity. It was very important to be exotic Brazilian at the time. I mean I am very thankful because the NGO was the reason why I was fed, I could find food for a while. The NGO does not exist anymore but I remember that my brothers and I went to their office many times because they had courses about Brazilian music, all of that afro Brazilian identity and it was the only agenda at the moment. I remember that I had both me and my brothers we had loads of fun playing Brazilian instruments, playing Brazilian music but at the end of the day we were there because of the food they served. It wasn’t really because of the so called the Brazilian award of the Afro-Brazilian identity. I understand that it may sound a little bit provocative for many people who think that they have the right to be authentic and so on but I always saw that as something secondary. You have your basic needs. When you live in poverty you pay attention to your basic needs more than your identity. You think of your identity when you… I mean in the state I am now I have food in the fridge so now I have the time and resources to think about my Afro-Brazilian identity.

Nerina: How did you get away from a slum in Brazil to a university in Sweden? 

Wenderson: That’s a big question and the first thing is that I received help as I say for a long time. It wasn’t something I received once and then I have built a huge empire of wealth around it and that’s what I am trying to. I usually tell people that I received help from the Catholic church specifically from a nun in the Catholic church close to where I lived. She was well educated and she helped me a lot with school and stuff and that help was absolutely crucial. I can tell you I devote a lot of what I have done so far to the people who helped me. Not only because they helped me but because they gave me a voice and that’s something not a lot of people did.

Nerina: What is the society you dream of? 

Wenderson: I think that equality should be on the table all the time when we talk about the way a society should look like and I still did not know where to look when I talk about the equality. I actually hope that there will be more and more collective thinking. Thank you.

Biography:

Stockholm Business School, Sweden

Connie Nshemereirwe

Connie Nshemereirwe
Researcher in educational measurement
Biography:

Director of Quality Assurance, Cavendish University, Kampala, Uganda.

  • Member, Global Young Academy
  • Inaugural Fellow, Africa Science Leaders Programme, 2015
  • Mentor Africa Science Leaders Programme, 2016
  • Vice President Doctoral Network of Uganda
  • Vice President for Education Bukoto Toastmasters Club, Kampala
  • Founder and Counselor Nkozi Gavel Club
Teachers, books, leaders. One Ugandan's Dream

Education is essential for our future and for the future of our children. However, research shows that our education is far from perfect. So, how can we make it better? Connie Nshemereirwe measures the literacy and numeracy skills of students, with the aim of making sure that every child in Uganda has the opportunity to become liberated through education. She dreams that one day, all people will be able to decide who theyr are, and be proud of the path they have chosen.

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Connie: My name is Connie Nshemereirwe, and I teach at the Uganda Martyrs University in Nkozi. I work in the Faculty of the Built Environment and in the Faculty of Education as a dual appointment. My main research area is in Educational Measurement.

Nerina: What are you working on right now?

Connie: I am measuring the literacy and numeracy skills of university students; both those that are entering the university and those that are in their third year of university. So it’s a cross-sectional study and I’m trying to see if being at the university has an impact on the development of these skills.

Nerina: What is the purpose of your research?

Connie: The reason that I decided to specialize in educational research mainly is because I feel that the quality of our education is not often – we say it’s poor but we don’t really know what are the specifics of this quality are. So we just think oh we need more teachers, we need buildings or we need more of these but I find that it’s really critical to measure the skills that this education of ours gives us and to think about the skills that we want and see where the gap is. So Educational Measurement allows one to really measure the performance of their own system so that they can have a more targeted input rather than just guessing we need more of this or more of that. So that’s why I do educational measurement.

Nerina: What did you find out?

Connie: The main research that I have done in measurement of late has been at the university level and I’ve been measuring the skills of university students in their first and final year of university. Basically in literacy and numeracy using items from the PISA Survey, which is the Programme for International Student Assessment and the thing which surprised me in my findings, was that the university students in some items performed worse than the average 15-year old in the PISA Survey. Worse still that the items on which they performed worse these are the items that require higher order skills. On the other hand though, it confirms what other researchers have found that if the foundational skills are not well developed then high-level skills are going to be difficult to develop.

So the university students can do very well in items in numeracy and literacy that require lower order skills but really struggle with items that require higher order skills. Which is really surprising because the students who are at the university are the best students in the country. They are the ones who can get to university. So what does that tell us about all the other students that drop out or that don’t go that far? That’s rather worrying I think.

Nerina: But the problem starts actually at school. There is a UNESCO report from 2015 that says that there are children who have been in school for three years who are not able to write and read. Why? 

Connie: It’s quite true. I’ve actually been at a school where I have met children who have been in school for three years and they cannot read a word like “ball” or you know really simple words and I think the problems are several. One is that the children who are enrolled in the first few years of school are a lot, the classes are really large and to teach such foundational skills, on literacy and numeracy, to a class of 90 or 100 is nearly impossible for one teacher. And further, a lot of these children are in rural areas where they may not have ever come across English. Some do not have any books at home, some have never even written the letter A or B, some do not go to preprimary school, they don’t go to kindergarten and they don’t have access to these kinds of schools. So when they arrive in the first year of primary school it’s a lot to learn and the teacher cannot really give each student enough attention. Yeah, it’s possible for them to come to school all these years and never learn how to read and the problem really continues through the education system because the emphasis on learning how to read and on counting and so on actually stops as they go to the fourth year of primary school and fifth year of primary school. They end up just sort of learning somehow and not learning properly. So yes that’s part of the problem.

Nerina: If you had the possibility what would you change tomorrow?

Connie: If money was not a problem and if time was not a problem, if everything could happen in an instant I would have much better trained teachers, at least graduate teachers in every primary school, that’s one. Two, I would have new books produced that depict the normal situation of children in Uganda. I find that a lot of books that are available for children to learn how to read depict situations that are foreign to them. So they show children bouncing a ball and a lot of rural children have never seen a ball bouncing or they depict children riding a pony or whatever it is. I mean they are really inappropriate. So straight away I would want to have books that teach how to read, that depict the daily situations of the children especially in the rural areas because that’s where the majority of children are. Immediately, I would also have teachers of a quality of at least a university graduate in every primary school. I think for me this would be the biggest improvement at this moment.

Nerina: What motivates you? 

Connie: The thing that motivates me is that I really believe that education liberates. Education can liberate someone. For me a good education or the purpose of education is to create a liberated person. To create a person who thinks about things themselves, who is critical, who feels able to transform their own reality and to choose their reality. So education plays a very big role.

If we can have an education that is purposeful in liberating people, in giving them the skills to be who they are and to participate in society. I think this has a very big role to play in creating a society that is proud, that choses who to become and is proud of who they are. So the thing that really motivates me to continue doing educational research and to make sure that every child has the opportunity to really become educated is so they can be liberated, so they can be free, so they can do what they feel like, when they feel like.

Nerina: What drives you in life?

Connie: The thing that drives me in life generally is something that has been driving me for the last 15 years or so and that is the possibility to become what I can become or who I should become. Along the way I’ve really been very careful always to look inside and think who are you? What are your skills, what are your capabilities, how do you feel about things in the world and how do you change the world or your life to become more of who you are? At some point it actually was a bit difficult to embrace this because I felt that I could be really excellent, I could be really be a leader for instance, but then I felt like on the other hand why should I be the person in front saying things that are not popular for instance or being the first person to point out this or the other. But I thought no. I should really be who I am and do what I should do and this is the thing that drives me really to become who I am or who I should be.

Nerina: Who is Connie?

Connie: Who is Connie? Of late I have begun to identify as a leader, as a person who stands up for what is right, as a person who speaks without fear about something that is not going right or a person who goes… Because sometimes you are in a situation where everyone is afraid to say what’s going on or be the first to point out something that’s wrong and these days I’ve decided as a leader I should always be the first to do it and it’s always in very small ways. I mean if the room is too warm if we’re in a conference I’m the one who will go and say, “Hey, the room too warm. Cool it down a little bit.” Small things like those, but also if something is not going right in the government or the country I will write to the newspaper and says something or if at the university they bring up a policy that I think is not very well thought out I will send an email about it. Of late I’ve really begun to identify as a leader.

Nerina: What does a leader do?

Connie: That’s a very good question. I used to think that a leader is the person who has the power or the influence. A leader can have influence but then it’s not an issue of power it’s an issue of relationship. If you can persuade another person to see things a certain way or to think about things and make up their mind about it I think that’s what a leader does. You spread the truth around you, you build relationships, and you participate in society actively. I think that’s what a leader does and that’s what I try to do.

Nerina: Do you have a dream or is there something that you dream of for the future?

Connie: Yes. I do have a dream for the future. I really dream of Ugandans specifically but Africans generally as a people that can come to decide who they are, be proud of who they are and chose to become. Rather than I feel that we don’t have a very clear vision of what we should be or we don’t feel very comfortable in the world. We feel a little bit behind, a little bit inferior, we don’t appreciate ourselves, we don’t appreciate our culture, and we don’t appreciate our skills. For me the dream is to see Ugandans and African in general as people who are proud, who know who they are and are proud of it and chose to become who they are. So for me that… I don’t know if it’s a very clear dream or sought of a very… [signals with hands vagueness].

Nerina: It’s a beautiful dream.

Connie: Okay that’s the dream.

Nerina: What kind of society do you dream of? 

Connie: Yes, what kind of society do I dream of? I’ve recently been reading the work of a philosopher called Paulo Freire who is a Brazilian and he says that the vocation of humans is to become and that any system that prevents a human being from becoming who they are is an oppressive system. So the society that I really dream of is a society where everyone has the opportunity to become who they are: to be a gymnast if they want to be a gymnast, to be a musician if they want to be a musician, to be an artist if they want to be an artist, and to be a mother if they want to be a mother. So a society that creates the environment where everyone can become who they are for me would be the ideal society.

Nerina: Thank you so much, Connie. 

Connie: You’re welcome.

Biography:

Director of Quality Assurance, Cavendish University, Kampala, Uganda.

  • Member, Global Young Academy
  • Inaugural Fellow, Africa Science Leaders Programme, 2015
  • Mentor Africa Science Leaders Programme, 2016
  • Vice President Doctoral Network of Uganda
  • Vice President for Education Bukoto Toastmasters Club, Kampala
  • Founder and Counselor Nkozi Gavel Club

Almas Taj Awan

Almas Taj Awan
Professor of Chemistry
Biography:

Researcher, ThoMSon Mass Spectrometry Lab, Campinas, Sao Paulo, Brazil

From Pakistan to Brazil, linking science and community

Everyday, we throw away tons of waste. But where does it all go? Can we turn waste into something usable and economically valuable? Can recycling be profitable? From extracting value-added products from oranges, to purifying water, Almas Taj Awan’s aim is to make our world a cleaner and better place for everybody.

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Almas: My name is Almas. I am based in Brazil. Originally I’m from Pakistan and I am postdoc researcher in Uni Camp, Brazil.

Nerina: What are your main research topics?

Almas: I am working with recycling technologies. In my Ph.D. I worked with recycling citrus industrial waste and we extracted some value added products from that. After that, I entered in a research area that was linked to recycling technologies that were used for water reclamation. We were studying how we can purify the waste water in the waste water treatment plants and currently I am working with mass spectrometric techniques and we are using these techniques for analysis of different kinds of substances.

Nerina: Why are you so passionate about recycling?

Almas: Well, I am passionate about recycling because I think that our world needs this. We have lots and lots of problems linked with the waste generation and when the companies and the industry generate waste they actually don’t know what to do with that and normally. Let’s say if I talk about citrus industrial waste every year as Brazil is the largest orange producer, so millions of tons of oranges they are treated in the citrus industry and as a result, millions of tons of waste are incinerated. Because when you treat orange around 50% of that is left as a waste and that is normally dumped at some far place. So what we did, I mean me with my Ph.D. advisor and some other students as well, we tried to use that so called waste and tried to convert that into something really usable and something really economically viable.

Also if I talk about the water recycling technologies, I think that the next problem that the world is going to face is a water shortage problem and we really need to think about it. How we can reduce water consumption and what kind of technologies we can utilize to re-use the water? Like, let’s say for the toilet flushing or for the washing purposes, the house cleaning I think we can use reclaimed water for that purpose instead of using the drinking water for that purpose.

Nerina: What kind of results did you get from your dissertation?

Almas: Okay well, from the orange waste four main products that we extracted were first of all I would like to say pectin. Pectin is kind of a jelling agent and it can be used in the jams, jellies, marmalades or the juice industry for thickening purpose. Then the second one that we obtained was hesperidin that is an antioxidant, it’s an antidepressant as well. It’s a natural product and it can be used as a remedy. Next product that we obtained was nanocellulose and nanocellulose is nowadays a very active research area and it can be used for the – ah how can I say it – as the protective sheets on the cellphones or on the cars and they’re many other uses as well that are under research study and then it was bioethanol. Bioethanol is something that you can use for running the cars.

Brazil is a country that has made an example for the whole world because it’s the world largest producer of bioethanol but that bioethanol is actually the first generation bioethanol. But in our case, we are working from the bio waste and that is a second generation biofuel and that is the next technology that’s efficient technology because taking out bioethanol from the food products is something that has many challenges. Probably these food crops they could be used for providing food because the world has a lot of problems with food scarcity, food shortage. So probably we can use that for the other purposes as food items, but the waste that is left; the agricultural waste that is left, that waste can be converted into a biofuel.

So, here in Brazil, there are many laboratories that are doing research. Actually, there are many ways to convert that into biofuel but the only problem is that the economic viability of that process on the industrial level. But in our case when we tried to… when we were exploring this process we had this objective in mind that we need to reduce the waste. I mean we need to use the waste, but also we need to make a process that should be economically viable that could be applied on the industrial scale. So, when you work on the industrial scale you need to think about the money. The input and the output should be in balance or it should generate some revenue as well. So in our case, we tried different enzymes because right now the main problem that the industry is facing they are the high cost of enzymes. So we used Xac enzymes that are the lowest known in cost. So we think that the process is economically viable.

Nerina: The approach that you used was a new one?

Almas: Yes, it was a new approach in the sense that in Brazil ours was the first one. We tried to work with this and we were really successful and our approach was to extract as many products as we can.

Nerina: What are the possible real world applications of your results?

Almas: I think this product is marvelous and all the products that we extracted we can extract them on the industrial scale. Right now we are working with some companies to make some contract with us or with our lab and we’re trying to share the patent with them.

Nerina: What does it mean for you to be a scientist?

Almas: For me to be a scientist is, you know, I feel it’s a really big responsibility. It’s a really, really a big responsibility because every new disease that the world is facing, the population is facing or any environmental problem or any real life problem that the world is facing I think that scientists they try their best to solve that problem at the research level, at the very basic level. Well, there are two types of researchers: one is a basic research, the other one is the applied research and I think both of them are really, really important. Because the basic research it gives us fundamentals of future concepts related to science. While the applied research it is something that deals with the current problems that the population is facing. So I think both of them are equally important and I’m really passionate about them.

Nerina: Why did you become a researcher?

Almas: Well, I became a researcher because I think that I’m quite ambitious and I want to solve certain problems faced by the society. If I talk about my childhood I never thought about this that I would be a researcher, I would be a future scientist. I belong to a village from Pakistan where I think I am the first one who came out of that village and my parents they sent me abroad to have a scientific career. Because when a child I never thought that I would be a scientist. I never thought because I was like I can be a doctor or I can be an engineer or any other thing but not a scientist. How can a woman be a scientist? I had never seen scientists around me. That was something I never even thought about.

But when I started my master’s I always tried to think about science and how it works. I was in Pakistan and at that time there was a lack of resources, but then I got to know about the fellowship that is offered by The World Academy of Science (TWAS). I applied for that and eventually, I started my research career in Brazil.

Nerina: What kind of challenges did you encounter on your way?

Almas: Well, I think that there were many challenges like I was coming from Pakistan a society from where we don’t have that much of female scientists and then, my family, they were really supportive: my father, my mother, my siblings but of course society they imposed a lot of things on you and then they’re like… I mean even there it’s not common for the girls to travel alone abroad and then working with science away from the family something it’s a bit scary not seeing them that much good situation. But the thing is that like in the beginning it was like a little bit difficult but with the passage of time when I started showing that yes I’m a girl but I can do anything and I can do work as a scientist just like the men in my country can do and I can be extraordinary as well and I can be independent as well. So it is something that now makes me feel really proud and not just me even my family and I think that I can probably be an example maybe for some girls who want to proceed with their dreams, who want to do whatever they want.

Nerina: What kind of advice would you give to another young woman who would like to become a researcher?

Almas: I would like to say that the doors are open for you. I mean the doors are open for you. You just need to have the courage to enter that door because all over the world what I see is that academic and scientific councils are really encouraging women. I mean wherever you would like to apply for higher studies research grants they really encourage women. We need more and more women so that the gender gap that exists between science and women it should be overcome and secondly, there are many issues that are linked in the underdeveloped countries. I think that women from the underdeveloped countries I would really, really encourage them not to have fear about anything, just be bold, take the practical steps, look forward and work hard. You can do it.

Nerina: What motivates you?

Almas: Well this is a really personal question. I think my motivation is my parents because I see they have struggled throughout their lives to make their children independent. So when I feel that or whenever I have some difficult times in my life I just think about them, they’re my motivation and I just try to make myself better and just try to make and have more and more achievements so that they can be more and more proud with me.

Nerina: Where do you see yourself in 5 or 10 years? What would you like to change?

Almas: Well, in the long term I would like to be part of the policy making bodies at the regional or the government or the global level. So what I would like to change is that I would like to make a bridge and I would like to reduce the gap that exists between the scientific community and the policymakers.

Nerina: What kind of society do you dream of?

Almas: Well, I dream of a society that is peaceful because currently I think that the world… I mean the only thing the world needs currently right now, the first priority is peace and then on the second level I feel that there should be… I dream of a society where every individual knows about its responsibility not just on a local level but on the global level as a global citizen.

Nerina: Do you have a dream or a wish for the future?

Almas: Yes, my dream for the future is that our government officials and the policymakers start thinking on the global level or I should say glocally. It means they should consider their local interests as well but the global interest as well because at the end of the day all human beings are the ones who share this planet. So probably our one wrong policy can not only influence our local community but also the global one. I think I really wish that our politicians around the world start thinking about the planet earth, about all of us, they think about the global citizens not just their local citizens.

Nerina: Thank you Almas so much for this conversation.

Almas: Thanks to you for inviting me, for sharing my thoughts.

Biography:

Researcher, ThoMSon Mass Spectrometry Lab, Campinas, Sao Paulo, Brazil

Robert Harris

Robert Harris
Professor of Immunotherapy
Biography:

Department of Clinical Neuroscience, Karolinska Institute, Stockholm, Sweden

Fighting brain tumors and Alzheimers

Our immune system is designed to respond to danger, to things coming in from the outside. But this is not the case with autoimmune diseases, in which the body turns on itself. Robert Harris is studying inflammatory diseases of the central nervous system. He learns how these diseases arise, how they are perpetuated, and what he can do to stop the process.

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Robert: My name is Bob Harris. I am a professor of immunotherapy within neurological diseases at the Karolinska Institute in Stockholm, Sweden.

Nerina: What is your main research topic?

Robert: My main research topic is really to understand inflammatory diseases, we do this in a variety of settings. Primarily it’s been or historically it’s been within the field of autoimmunity where we focus on multiple sclerosis but in recent years we’ve also expanded into Alzheimer disease and brain tumors. So, inflammatory diseases of the central nervous system and what we’re interested in doing is learning how the diseases arise, how they’re perpetuated and what can we do to stop those processes. So they’re designing novel types of therapy to try and reduce the disease burden or hopefully to even stop it.

Nerina: What are actually neuroimmunological diseases?

Robert: Immunological diseases …autoimmune diseases at least are diseases in which the body attacks itself. Usually, your immune system is designed to respond to danger, to things that are coming from outside like infections, but sometimes for reasons we don’t understand why then the body turns on itself and starts to destroy its own tissues and these are called autoimmune diseases.

What happens in chronic inflammatory diseases is that there is disregulation of the regulation and that means that the immune system starts to do things which it shouldn’t do. So, if you have something that goes wrong in your body, then your body should respond and take away whatever it is that is not right. And then that can be either something that happens to your own cells when they become abnormal in the form of cancer or it could be that you get infected by something, a bacteria that comes into your body that shouldn’t be either. So your immune system is there to protect you from these things but sometimes it loses the instructions not to respond to itself and so it starts to attack itself. There are many reasons for this occurring, but really your immune system becomes diseducated and starts behaving in a bad way. And then, when it starts to do that, it starts to attack itself and it can lead to dysfunction in your body and depending on where the damage is done then you can either then develop diseases of your brain, your liver, your pancreas or your joints.

Nerina: What is your approach to try to find a balance again?

Robert: The first thing to try to readjust the balances is to actually prove that there is an imbalance. That’s one of the things that we can do by studying our animal models and by studying our patients’ samples to actually try and work out what’s happening in the blood of these individuals who actually are sick and how do they differ from people who are not sick and that would give us some clues about the immunological processes which are occurring and that would then give us clues about how we can stop them.

Nerina: What is your special approach in your lab or what is your idea? 

Robert: We have a number of approaches to try affect immune therapy. The major focus in the last five years has been on novel cell therapy. One of the immune cells which are involved in these chronic inflammatory conditions is the cell called a Macrophage and these are very numerous, they are all over your body in all your tissues and you have a number of them immature called monocytes circulating in your blood ready for action in case something happens. So when you get an infection in your skin, then there will be a recruitment of these monocytes to repair that part of the skin, that go from the blood into the tissue, become macrophages and do what they are supposed to do to kill the infection.

The resident cells which are all over the body have another role and we think that that’s mostly to keep things in check, the homeostatic functions, to keep the balance. So, there’s an interplay between these two cell types.

Then the macrophages themselves can have different properties. They can be nasty ones that chew up the bacteria, these are pro-inflammatory, and then there are others which calm things down and they have anti-inflammatory function and there should be a balance between these two. It’s like Yin and Yang, so when you activate one side, then you should have the other side that comes and regulates it. So, in chronic inflammatory conditions like multiple sclerosis then you have an overactivity of these pro-inflammatory cells that rip your brain tissues apart and that’s why you get the disease. So, our hypothesis is that you have an imbalance in these two populations. People who get these chronic inflammatory conditions are a little bit trigger happy with the pro-inflammatory side and maybe they are actually insufficient in down-regulatorty side, the anti-inflammatory side.

In settings of cancer, for example in brain tumors, then it’s the opposite. The tumor is actually able to survive because it’s anti-inflammatory. So in this case, then it’s the other side that’s actually a little bit too active and you are lacking the pro-inflammatory side. So, in each case, in each scenario then our hypotheses is that if you give back cells of the right sort, so in autoimmune conditions – anti-inflammatory, in cancer setting – pro-inflammatory cells. So, we can take blood from a patient, we can purify these monocytes, make them into macrophages, stimulate them to be pro-inflammatory or anti-inflammatory and inject them right back into the same patient. Hopefully, at the site of where the disease is and that would then restore the balance locally and then it should halt the disease process.

Nerina: What is the peculiarity of your research?

Robert: One of the peculiarities of our research is that not many people work with these cells, these macrophages that we are working with. They are sort of considered to be the garbage collectors in the rest of the body, when you have some damage or you need to get rid of something, you get infections, some bacteria in the skin they get taken care of, the macrophages are the garbage collectors. They come up and get rid of all the dead tissue and make things right again. This is why you have macrophages in every organ in your body as well as theses circulating ones that they can come in high numbers if you really, really need them. They are like soldiers that are pulled onto the battlefield as extra resources, but many people don’t think then that these cells are so smart, but they are very numerous.

So we actually think that they are a little bit underestimated and very few people have been working with macrophages until the last five years and then it’s been sort of a renaissance in the field and the abilities of these cells to be multifunctional more than just the garbage collectors have actually become a little bit more apparent. So now there’s a lot of interest actually in what they do, but people are still not really interested in these being able to use them in immunotherapy the way that we are. It stands to be tested. People have actually started to use our protocol, one of the papers we published where we could show that we could induce anti-inflammatory cells in human cells which we published in the Scandinavian Journal of Immunology. It’s been the most downloaded paper in the last couple of years. So there’s a lot of interest and some people are actually starting to report using our protocol in their systems and in other disease models that we haven’t studied ourselves and it still works as well. So I think it’s coming and it’s not going to become so peculiar but they’re not so many people who think this is the first cell type to study and that’s why we are a little bit strange.

Nerina: Why do you think your approach is better than others?

Robert: It’s not a question whether it’s better, it’s a question of time and money and efficacy. One of the beauties of our theory is that the hypothesis that we will use patient’s own cells. So that there won’t be any problem with any rejection when we try to put these back into the same person. They are their own cells they are just not doing what they should do. So we’re giving them a little bit of help along the way to actually turn into the cells doing the things the right way they should do and put them back in and I think that’s a smart approach.

I think that what we have seen from other immune therapy approaches are that even if they are very successful and if we take an example of Rheumatoid Arthritis where one identified the molecule called TNF which is one of the sickening components which is very highly expressed in Rheumatoid Arthritis patients. So, they found ways to inhibit this molecule by using antibodies or soluble receptors which then can take it away

The immune system has been developed for hundreds of thousands years and suddenly you take a part of it away. It’s a bit like chopping your foot off you would be still able to walk, you would be able to hobble along, but you won’t be able to run and you won’t be able to climb stairs in a good way. It doesn’t really make sense to take something away. So I think that our approach is just giving back something that is really a little bit insufficient is a more natural way to actually reset the balance.

Nerina: What’s next? 

Robert: The next thing with this is really to go into patients. One of the challenges with trying to go from experimental systems to humans is me not being a medical doctor is that I’d then have to engage clinicians. So at the moment, I need to try and get funding to fund this and then try to find doctors that are willing to try and that’s really where I want to go. If I can make life better for just one patient then I will feel that I’ve done my job as a researcher.

Nerina: How much do we actually know about ourselves or about our body functions? 

Bob: We now know a lot about the body functions, we’ve known a tremendous amount about the immune system, but unfortunately one of the challenges that I see is that we have always been studying disease, we have studied people with allergy, we study people with autoimmune disease, we study people with cancer, but we don’t actually know too much about healthy people. We study aging even as well, but this is when things start to go wrong. But we actually have relatively little experience of healthy people, to actually know what’s going on in healthy people and how does their immune system actually look. Is it always non-activated or is it always on the go a little bit? How’s the regulation done there? So, I think that we need to actually study health in order to get a better handle on what goes wrong when you get a disease. But we know a lot and there are very many therapists that work very well and lots of new therapies being developed so the knowledge that we have it’s actually made tremendous progress.

Nerina: What do you look forward to now?

Robert: What do I look forward to? Summer holiday. No, what I look forward to in research is actually the research community as a global community and a lot of smarter people out there, lots of smarter people than I am and what’s nice is that we then share this knowledge and what I look forward is actually a major breakthrough. It’s been a long time since there has been a major breakthrough in medical research. Maybe the last really major significance was the small pox vaccination and that’s way back in the 60’s. So it’s about time that we actually came with something really revolutionary and we’ve had really good advances in sequencing the genome and so on, but most of the advances have been technological. But I think it would be nice if we actually could really nail one disease and eradicate it from the face of the earth.

Nerina: You got a prize as a great teacher. What is your role, how do you see yourself as a professor? 

Robert: You know that some people are good at doing research, some people are good at writing things, some people are good at talking. I seem to have a talent as a teacher. I realized this quite early on and I am heavily involved in all sorts of training and development of training. So it’s something I enjoy doing. It’s fun to be able to inspire other people to be better in what they are doing and that’s the point of a teacher. Whether it’s to students to inspire them in their quest for knowledge or whether I do a lot of leadership training, especially for our Ph.D. supervisors and to inspire them to actually be good in those roles.

Nerina: What is good research?

Robert: That’s a very interesting question. Beauty is in the eye of the beholder and so different people would tell it’s different things. I think good research should be based on sound ethical principles, good critical thinking and should be interesting. So that for me is what good research is all about. Research is all about searching again. That’s where the “re” comes in. So, often good research is nowadays is going over old research but using new methodologies in order to address these questions and that could be just as exciting as finding something completely new.

Nerina: And what is a good researcher?

Robert: Ah…good researcher I am not sure, you need to ask someone else. No, a good researcher should be somebody that is really interested in asking questions. “I need to know” – that’s what drives me. I am inquisitive and I like to be able to think, to be innovative in my thinking and a lot what we do doesn’t work. So a good researcher needs to actually have the stamina to face failure because 90% of the time we fail in what we are doing. We ask questions, we pose a hypothesis, we test them and they show not to be true, so we have to go back to drawing board and start again. So I think a good researcher is actually somebody that doesn’t give up, that actually sees the big picture and for me, it’s the patience. If you see people suffering or if you see people dying from the diseases or the diseases we are interested in studying, there are no cures for them and they are horrible diseases that really affect people. We could have picked up something that would be easier to fix but that’s not so interesting for me. I like the challenge of actually doing something that’s undoable at the moment and really to make efforts to do that and I think that’s also the essence of research, at least in a clinical setting, that want you to actually be trying to do something that’s going to be of use to the patients.

Nerina: Thank you very much, Bob.

Robert: Thank you.

#followup with Robert Harris

Robert Harris, Professor of Immunotherapy in Neurological Diseases at Karolinska Institutet sent us a short video with some interesting news. Have a watch.

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Biography:

Department of Clinical Neuroscience, Karolinska Institute, Stockholm, Sweden

Paul Mason

Paul Mason
Medical Anthropologist
Biography:

Associate Lecturer, Macquarie University, Australia

Why does tuberculosis still kill?

Tuberculosis is a slow killer, and a hugely neglected disease. The programmes we currently have are not sufficient to stop TB. So, what are we doing wrong?
Paul Mason shares his vision of how we should address tuberculosis, and what approach we need to take in order to cure it.

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Listen to the Audiofile here:
Read the transcript of Paul Mason's Video here

Paul: Hi, my name is Paul Mason. I am medical anthropologist based in Sydney, Australia. I work for the Woolcock Institute for medical research and also the Center for Values, Ethics and the Law in Medicine at the University of Sydney.

Nerina: How did you get into this field?

Paul: Okay, so my background is in biomedical science. I actually started off working in neuroscience on the brain and I was doing laboratory research in neuroimaging and then I moved into neurogenetics and then I moved to circadian rhythm research actually. And what I started to realize is that if we want to understand how organisms work, we have to understand them in context. This drew me increasingly towards anthropology because the basic premise of anthropology is to understand matters in context because it is the context that confers meaning. So after my biomedical science degree and after working in a few laboratories doing a honors in psychophysics, I then drifted into anthropology and eventually did a PhD in anthropology because I saw that the social and cultural dimensions of human behavior are so important to understanding how biological and physiological dimensions about being come into life and how they come into being.

Nerina: What has an anthropologist to do with tuberculosis actually?

Paul: As an anthropologist, I spent a year in Vietnam interviewing TB patients. So I interviewed 75 tuberculosis patients, conducted focus group discussions in rural villages in the southernmost province of Vietnam and also performed what is called Participant Observation Research in diagnostic laboratories and district health center. That means I took part in the lives of the people around me, I became involved in the activities of the health center and the diagnostic laboratory and mapped up and documented the activities in order to analyze it from a qualitative perspective.

Nerina: And what picked your interest for tuberculosis?

Paul: Tuberculosis is an infectious disease. It outranks HIV/AIDS as the world’s biggest infectious killer. So, sadly over 1.5 million people die from tuberculosis disease each year and this really shouldn’t be the case. There is an effective treatment for tuberculosis, so there are antimicrobials that patients can take to get rid of this disease and become healthy again. Sadly, however, too many of these patients are not accessing the proper diagnosis and treatment for tuberculosis.

It’s a very slow killer, so it takes a long time to kill someone which means that it has lots of opportunities to transmit to other people. The most likely scenario to get tuberculosis is sharing a house with someone who has tuberculosis and having a high microbial load in the environment.

Tuberculosis is a hugely neglected disease. There is funding available to conduct tuberculosis research, to fund tuberculosis control and care and prevention program, but it’s not sufficient. And so, as the biggest infectious disease but one that we can actually cure, I felt that this was an area where I could channel my skills and that would pay off, because we do have a cure for this disease. It’s just a matter of making sure that the cure is getting to the patients.

Nerina: What do we do wrong actually when we have a cure but we don’t cure the patients?

Paul: I think actually it comes down to this as an answer. We tend to invest all available life in the cure of tuberculosis in the tablets that we give to patients. So donor agencies around the world and foreign aid organizations work hard to make sure that those pills are offered for free to tuberculosis patients around the world. But what we forget of course with that is the care and support services that need to accompany those pills in order to make sure those patients can fulfill their complete treatment and treatments for tuberculosis are long.

At a minimum, they take six months, at their worst they can take up to five years and so this isn’t a very easy disease to treat. In the sense that it requires a big investment on behalf of the patients who have to access services, who have to find ways of making money when they can’t go to work, finding ways of meeting the ancillary costs of treatment, having proper nutrition, looking after the side effects that the drugs you are taking etc. So there are a lot of peripheral dimensions to treatment that we forget if we focus too much on the pills and don’t think enough about the quality of life and the patient important outcomes.

Nerina: How important is context for tuberculosis?

Paul: Oh, context is almost everything. I might be overstating it but allow me to explain. Not everyone who gets tuberculosis falls sick with tuberculosis. In fact, they estimate that around only 10% of people who are infected with the organism actually become sick with tuberculosis.

So, this says something. It says something about one people suspected genetic predisposition but secondly, it also tells us about the conditions in which someone is living. If someone is living in an overcrowded living arrangement, if someone is malnourished, if someone is living in poverty, these are the biggest risk factors for tuberculosis. Even before they discovered the organism Mycobacterium tuberculosis researchers and medical clinicians saw a relationship between poverty and tuberculosis. So, in fact, if we want to address tuberculosis then we have to address the conditions that foster the transmission of the disease and the activation of the disease in vulnerable bodies.

Nerina: But do we have a problem with resistance?

Paul: We have a very big problem with resistance. So sadly the globally standardized models of treatment that we’ve been using for tuberculosis have been focusing on drugs susceptible tuberculosis. Drug resistant tuberculosis in some locations around the world may, in fact, replace drug susceptible strains of tuberculosis.

Nerina: Why do we not speak about this danger or why do we not speak about tuberculosis that much?

Paul: This is a really interesting question because and I think a very superficial answer. Not an inaccurate answer but a superficial answer is it doesn’t affect us. In high-income countries tuberculosis is something that we can get treated, so if we get tuberculosis we go get treated and then we forget about it, which is unlike HIV/AIDS for example. If someone has HIV/AIDS that’s a chronic condition. At the moment we don’t have a way of getting rid of this disease, someone has it for the rest of their life. So this generates advocacy groups around HIV and AIDs, we don’t see the same culture of advocacy around tuberculosis.

So not only is it not happening much in high-income countries, it also is a surmountable problem in high income countries. People in low and middle-income countries don’t have the facilities to create this advocacy groups, don’t have the resources to create a community around this disease and really foster and support each other through what is a very lengthy treatment process. So because it doesn’t happen before eyes because it isn’t problematic for us, I think it’s very easy to forget how challenging this disease can be for people in the developing world.

Nerina: How can we beat this illness?

Paul: To really stop the devastation that tuberculosis is causing on human populations, then we really need to think about the complexity of this disease. We really need to be thinking about a holistic integrative approach that looks at the disease, not in terms of just a pharmaceutical treatment but also in terms of human races, in terms of food security, in terms political mobility behind the disease, economic capacity building, as well as stigma reduction strategies. So, there’s no simple answer to that question but there’s a very exciting answer in the sense of looking at these integrative holistic solutions.

Nerina: You wrote a book for children about tuberculosis. Could you tell me more about it?

Paul: I did, yeah. This is really exciting. I wrote a book about tuberculosis based on my work in Vietnam and the book has got this lovely message about supporting someone who is on treatment: sending them an SMS, sending them a letter, letting them know that you’re thinking about them, supporting their families as well. So it’s a very simple book, it’s got a very simple message and it talks about the diagnosis, the treatment, the symptoms of tuberculosis. What’s been really exciting for me is that I’ve been contacted by people from Tanzania, people from Malaysia, people from Indonesia, from Romania, from so many different countries to do translations themselves. That’s been really fun and almost weekly now I am putting the book into a new translation and making it available for free on the Internet.

Nerina: What motivates you?

Paul: It’s the opportunity to do something to someone else. It’s the opportunity to contribute. The sense of fulfillment that you get from doing that.

Nerina: And what is the most important lesson that you have learned from your research?

Paul: The most important lesson I’ve learned is perseverance. A tuberculosis patient I’ve worked with in 2014. He surmounted incredible challenges to: in the first instance to get a diagnosis, in second instance to complete his treatment. And when I realized how the small tokens of effort that came from me how much they transformed his life that’s when I realized that if we are willing to step outside our box, if we’re willing to really persevere and make those small tokens of effort possible then we can engage in some wonderful acts of reciprocity that build really unlikely friendships and transform lives around the world.

Nerina: What kind of society do you dream of?

Paul: Well, for one, I dream of a society that is free from the conditions of hostile diseases like tuberculosis that’s free from poverty. I dream of a society where we think about sustainability not just in terms of rhetoric but in terms of the practices that we bring into everyday life. I dream of an integrated society, you know a society that is free from conflict on a mass scale and mistrust. I think it’s really possible to engage in cross-cultural communication in ways that are fruitful and creative and constructive. I want to live in a world that isn’t as destructive as it currently is. I’d really like to live in a world where people learn how to get along and I just don’t know whether we’re quite there yet but we have the skills out there. I just want to make sure that those skills in some sort of way are getting to the greatest number of people possible.

Nerina: Thank you Paul.

Paul: Well thank you very much, Nerina. I appreciate that.

#followup with Paul Mason

Last year, we spoke to the medical anthropologist Paul Mason who told up about his research on tuberculosis. On the occasion of the World Tuberculosis Day, 24 March 2018, we spoke with him again. Listen to Paul and learn more about TB and Daru Island.

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Biography:

Associate Lecturer, Macquarie University, Australia

Martin Clauss

Martin Clauss
Professor of Medieval History
Biography:

University of Chemnitz, Germany

The Middle Ages, war, and perspectives

Is our picture of the Middle Ages correct? Was it all about knights in shining armour? Was it the time of kings and heroes or was it the most brutal period in human history? Martin Clauss discusses why our understanding of the Middle Ages is a modern construction, what our society will look like to our ancestors, and why we need history.

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Read the transcript of Martin Clauss's Video here

Martin: My name is Martin Clauss. I am a professor of Medieval History at the University of Chemnitz, in Saxony, in Germany.

Nerina: And what are your main research topics?

Martin: The medieval history of Europe and within the medieval period, I specialize in the history of war and warfare.

Nerina: Why are you so interested in war?

Martin: The middle ages are a period full of warfare. There’s basically in each year, in every country there’s war and so you would have to study war and warfare to understand the medieval period as a whole and this is why it is important for me as a medievalist and then I think it is an important topic for the public. I mean, we have a certain image about the Middle Ages and warfare is always part of this image. We all have a picture of knights in our heads with shining armor, fighting brave battles and I think as a professional medievalist this is my duty to say something against this picture and to correct it to some extent and to make clear that war in the Middle Ages as every war is a brutal and bloody thing in the first place and there’s nothing to do with heroism but with manslaughter and a lot of suffering.

Nerina: What kind of sources do you use? 

Martin: The interesting thing is that studying warfare and war you can basically use all kind of source material. War is a topic in basically everything we have from the Middle Ages. You have written source like historiography, chronicles talking about war all the time. Then you have what we call medieval literature like the big romances and everything, there’s war all over the place. Then you have pictures, you have legislation, you have laws of war, laws of warfare. Then you have archeological remains – castles, city walls and everything.  So it’s a very wide range of topics. I am specializing on historiography, so people who write history in the Middle Ages and the way they talk about war, the way they use language to describe or better to narrate war in the Middle Ages.

Nerina: You wrote that war is a matter of perspective. Could you tell me more about it? 

Martin: Yeah, that’s a very interesting thing. One big research topic I made a couple of years ago is about defeat, about the question how defeat is seen and judged in medieval historiography and here we can see very clearly that it is always a matter of perspective. I mean, the losing side and the winning side, they tell totally different stories about war. It is a bit the same as we can see today. I mean if you look at contemporary warfare, the Americans have a different perspective on their war in Afghanistan or Iraq than the Iraqi people have and this is pretty much the same in the Middle Ages.

The loser tells the story about bad fate, about bad luck, and the winner tells the story about God helping the right side and bringing justice to the good cause and so we have very different stories here. And I think in history basically everything is a matter of perspective but with warfare, it comes much more clear than in many other topics.

Nerina: How did the normal person experience war? 

Martin: This is a question we would like to know more about but for the middle ages we don’t know much about that. That’s one thing we have to admit. Contemporary history: First World War, Second World War and so on, we have a lot of sources about the normal man, like the average people writing diaries, or something, or writing letters. We don’t have these things for the middle ages. In the Middle Ages the sources are very much concentrated on the higher end of society: kings, queens, noble men, and so, to find out how the normal citizen, for example, experienced warfare, is very, very difficult. We can only make some assumptions, we can look at the descriptions, we can see the extent of destruction, of the devastation and we can conclude that the people suffered a lot, but it’s very difficult to pinpoint it exactly.

We obviously have to take it into account that the story is the one thing and the real history, the real war is another thing. Sometimes, very rarely, we get a glimpse of the real war when there are people complaining about the cold, the suffering, the hunger. For example, there’s one poem in there soldier described that they have always been hungry on the campaign because there was not enough food, and it was terribly cold under the armor and it was raining. So sometimes, we get this kind of real picture of warfare but normally we have this disconnection. The people who waged war see it as a privilege and this is why they write about heroism.

And this is only true for a very small proportion of the people actually fighting because in medieval war there were peasants fighting as well but nobody writes about them, they don’t have a voice basically, so they just kind of disappear in the chronicles.  And the chronicles focus only on the heroes, on the bright side of war if you want to say that.

Nerina: Why do we have this connection between war and hero?

Martin: Yeah, in the Middle Ages we can clearly see that there’s connection between the stories that are told about war and heroes. So, it’s the story that makes the hero and this is why…Why is that? The stories are written for the aristocracy and the aristocracy is in power, aristocracy has its social function is to protect the people, to protect the people by waging war. This is the ideal of the middle ages. And so, being able to fight in war is a presumption to be part of the aristocracy, to be part of the leading class. And the other explanation is perhaps in terms of gender that it’s in the ancient times and the middle ages as well, that there’s a connection between manhood and warfare and violence. So, the real man is able to execute violence in war and this makes him a great hero and so these two come to the end that there’s a strong connection between warfare and heroism and in some parts of society war is the only way to be a hero.

You can, for example, this is a very recent research topic, we look at the connection between kingship and war and here we got the impression that when a man becomes king, so he’s a young king so to speak, then the tendency that he wages war is higher because he has to prove himself as king, obviously by waging war. So let’s say he becomes king and then he goes on a campaign two or three times and then he proves himself as a warrior king and then he can stop doing that. So when he’s older, an older king then he doesn’t go to warfare that much.

Nerina: What kind of lesson did you learn from your research?

Martin: Yeah, the first lesson is that our picture of the Middle Ages, we have to be very careful with it. You know, we look at the movies we see the bright shining armor knight things, this is not how the medieval times really were. So it’s important to really understand that the middle ages are a construction. A construction of modern thinkers. So what we have now is the Middle Age’s that are our Middle Ages. The Middle Ages we produce by researching, by writing books, by making films, everything. So I think it’s interesting and important to understand this character of construction that the Middle Ages have.

So this is the first lesson for me as a medievalist, this is an important thing. But on a broader scale, I’d say thinking about warfare in terms of heroism is not only a medieval phenomenon. I mean we see it today. If you look at modern movies about modern warfare, you always got this hero plot. It’s like, you know, the one brave soldier ignoring the command and then fighting bravely against the laws. And I think this can be quite dangerous if you think about war only in terms of heroism. You should take the broader picture and you should try to understand how these narratives about heroism, how they work.

Nerina: And Martin what do you think that a historian, let’s say in 500 years, will think about us? 

Martin: Yeah, this is an interesting mind experiment and obviously I do that a lot with my students; to tell them you know when we look at what we produce as sources for example. If you sit in a seminar and we write our notes and then somebody finds these notes in 500 years or 3,000 years’ time what will he think or she thinks about this seminar. When our society is going to be looked at in the future I think they will be the impression that it is a very complex and to some extent very irrational society and I think historians will consider our time as very individualistic. So people tend to look at their own lives, the lives of their families and they stopped caring about the bigger picture to some extent. So it’s a society based on individualism and it’s a…how to say that… it’s a dissatisfied society.

Nerina: What kind of society do you dream of? 

Martin: Well, first of all, a society where men and women are treated equally. This is some – I have two daughters myself and so I got the impression that we still live in a society where the gender gap is very, very big, much bigger than it should be. And when I look around, for example, the Germans University system it’s totally male dominated, there are very, very few women. Well, on the other hand, I would like a society where the respect for nature and the respect for the environment is something like you don’t have to argue about. It should be like everybody should think about that like automatically. So these are the two things that in my dream society would be different.

Nerina: Why do we need history?

Martin: So I think you have to look into history to understand how society is working and to understand that some things that people think as granted you know it’s like old they are not as old as people think and if you look back in history a bit further you’ll find totally different setting and that makes understand that the times we’re living and this is not like world it can’t be changed. There can be changes all the time and this is why history is important and it’s good fun of course. I really enjoy doing it.

Nerina: Thank you so much, Martin. 

Martin: Thank you very much. That was a great pleasure.

Biography:

University of Chemnitz, Germany

Dolores Bueno López

Dolores Bueno López
PhD in chemistry
Biography:

Autonomous University of Barcelona, Spain
Dolores Bueno López works at Nanomol group which is part of ICMAB-CSIC and CIBER-BBN.
Using compressed fluids they work with nanocapsules made of lipids that can encapsulate proteins, trying to help in some rare diseases like Fabry disease and Sanfilippo syndrome.
Both diseases are associated with a metabolic disorder, causing the storage of certain metabolites in the body. You can have a look at their last paper in the matter of Fabry disease HERE.

Nanotechnology, rare diseases, and dreams

Modern medicine saves millions of lives around the world every year. But not all diseases get the same attention from medical research. There are some rare diseases which are not investigated properly, and the reason for this is a lack of resources. Nevertheless, there are still researchers who are passionate about their work. Dolores Bueno Lopez is one of them.

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Listen to the Audiofile here:
Read the transcript of Dolores Bueno López's Video here

Dolores: My name is Dolores Bueno López; I am doing my PhD thesis in science material at the Autonomous University of Barcelona.

Nerina: What is the topic of your dissertation?

Dolores: The topic of my dissertation is: we’re studying capsules – liposomes, which are made of lipidic materials and we try to encapsulate different proteins or molecules in order to treat some diseases.

Nerina: What is the purpose of your dissertation?

Dolores: The purpose of my dissertation is to study the chemical and physical properties of our liposomes because we are changing little things like the composition of the ratio between the components. We are also changing the final properties of our Nano carriers and the nanomedicine. My topic is not nanomedicine but science material; in the end we want the application to be in nanomedicine but we are studying the properties at a very basic level.

We want to reduce the doses, to reduce the side effects of the treatment and to functionalize the superficiality of our Nano drug in order for it to go to the target specifically. We are studying the chemical and physical properties of these capsules but our aim is that it can be used in rare diseases for nanomedicine.

Nerina: What kind of diseases are we speaking about?

Dolores: They are rare diseases so they have a low incidence in the population. They don’t have a lot of resources to investigate such diseases so I am proud and happy that in my group we are dedicated to investigating that. Those diseases that I speak of, Fabry disease and Sanfilippo syndrome are both about the lack of an enzyme, a protein inside our cells that is in charge of degrading some metabolites that are a waste of the cell. If this protein lacks, these residues and metabolites start accumulating in the cells causing several symptoms thus leading to these diseases.

Nerina: Why is it that difficult to find a treatment or to put this enzyme into the patient? What is the challenge?

Dolores: The challenge is to avoid the degradation of the enzyme and to really focus the treatment in the zones in the body that have to make the action.

Nerina: Why did you want to become a researcher?

Dolores: Well, I think that when I was little, when I was a teenager, I was impacted by some diseases like Alzheimer’s that existed in my home. My great grandmother had it, and also my grandmother now has this disease, so it impacts me how a person can lose all her memories and become a child, kind of. I feel that science can change that and science is the solution to improve the life of people that are suffering. So, I think that that influences my way of thinking.

Nerina: Why are you so passionate about science? What is so fascinating for you?

Dolores: That it can really explain the world we live in and give us answers and also that with these answers we can change the world because we can apply these answers to create technology. I really hope that science will make us better humans.

Nerina: In what way?

Dolores: In a way that we are going to have more knowledge and I expect that this makes us really wise so that we can avoid wars and all this kind of things because we are at a higher level. This is a very long futuristic hope but I would like to see that science can really change our lives for better. Not only in curing illnesses but also in making us better people.

Nerina: What would you like to change in science? 

Dolores: Well, I have a kind of romantic way of thinking about science. I think that science is an accumulative knowledge that we all make so there should be an open source and free access for all the people in the world.

Nerina: What do you like doing when you are not working on research?

Dolores: I really like speaking about my research but speaking in a way that my mother or my grandmother can understand what I am talking about. Because I really like my job, I want people to understand the joy and the passion I have for what I am doing. So in my spare time I have a blog or I collaborate in different blogs or platforms.

Nerina: Where do you see yourself in ten years?

Dolores: I would love to see myself in Africa working maybe in a small lab; but working in soil chemistry in order to improve agriculture in this zone, that’s my dream.

Nerina: Thank you very much, Dolores.

Dolores: Thank you. I liked this conversation a lot.

Biography:

Autonomous University of Barcelona, Spain
Dolores Bueno López works at Nanomol group which is part of ICMAB-CSIC and CIBER-BBN.
Using compressed fluids they work with nanocapsules made of lipids that can encapsulate proteins, trying to help in some rare diseases like Fabry disease and Sanfilippo syndrome.
Both diseases are associated with a metabolic disorder, causing the storage of certain metabolites in the body. You can have a look at their last paper in the matter of Fabry disease HERE.

Maria de Lourdes Peréz Cruz

Maria de Lourdes Peréz-Cruz
Professor of communication
Biography:

Escuela de Humanidades Universidad Modelo,
Mérida, Yucatán, Mexico.

I love hypertext

People love telling stories, and we do it all the time. New technology has opened new ways of storytelling.

Speech evolved into text and text evolved into hypertext, which brings with it a whole new approach to storytelling.

In this new kind of interactive narrative, the author wants to challenge you to play with all of that structure – the kind of structure you can find on digital media – thanks to the capabilities of hypertext. Maria de Lourdes Perez Cruz wants to rewrite old stories using new media technologies.

Watch the video:
Listen to the Audiofile here:
Read the transcript of Maria de Lourdes Peréz-Cruz's Video here

Maria: My name is Maria de Lourdes Perez Cruz. I am a professor in the Humanities Department of Universidad Modelo here in Mérida, Mexico.

Nerina: What are your main research topics?

Maria: Well, I’m interested in interactive narratives. I study the relationship between hypertext as a narrative structure in every kind of digital media like video games, websites, internet videos or even apps.

Nerina: What is actually a hypertext? 

Maria: Well, the hypertext is an informatics technology; it’s the base of the web. It changes the way we read stuff. It’s a non-sequel structure which links information with electronic hyper-wrinkles. You have all the parts of history in a big space so you can choose the one you want in the order you want. You jump between text, image, music, a piece of audio or even a photo, in the order you want. You choose the path you want as you have many options which the author can give you. You make your personal version of the story. That’s very interesting because it’s a very democratic way that we can make sense of the stories that other people share with us.

Nerina: Why are you so passionate about it? Why is it important to know about hypertext, in your opinion?

Maria: Because it helps you to understand how narratives work. For example, I love video games. I think that video games are new ways of more complex narratives. The interesting thing is, it’s a kind of fight between the team of the authors and you as a reader because they choose how interactive they want to make the structure, how open or how close, how much control they’re going to have, and how interactive they’re going to be. And you have the freedom to change all that you are seeing or all you are interacting with.

The history of hypertext begins in 1945 after the Second World War, a bunch of academic scientists; one of them was Vannevar Bush. He wrote a paper titled “As we may think”. He imagined that maybe the work of all the academics in the world can be in one space. So the hypertext is kind of new but I think we don’t look at that with the attention it deserves because it was a little effort that created all the new ways on intermedia. The new way is so that we can have access to new ways of telling stories.

Nerina: How do you think that these new ways of telling stories are changing the relationship between the author and the reader or the author and the player?

Maria: I think it’s changing in a democratic way. I’d like to think that in this new kind of interactive narratives that the author wants to challenge you to play with all that structure, the kind of structure you can find on digital media, thanks to the hypertext. So it absolutely changes the way you now see the author as another player that is playing with you or is giving you some pieces of information that you can find or you can use whenever you want and change the experience because you are taking the information he gives you. At the end, all you are doing is reading in your own way and making your experience with the story, a personal version of what you want to do with that information that the author provides.

Nerina: What is the most important lesson that you have learned from your research?

Maria: Well, I think the most important thing is the narratives, the stories are the most human experience, and you can design them in many ways. Stories of human kind are very few, but you can make many versions of the histories or stories of the human kind, thanks to all the technological or medium development. So I think it’s the most interesting thing that you can create a new version of that story that has been told from the Greeks, for example.

Nerina: Do you have a dream for the future?

Maria: I don’t dream about the future, I have to confess. I don’t make plans for coming years. I live for the moment; I live each day one by one. I try to do my best, it’s like the hypertext structure – I’m living this moment and I have many possibilities. I don’t know what I’m going to choose because there are different contexts and situations. I also experience different feelings at that very moment that can make me choose something. So I don’t make plans, I’m not good at making plans. I just live day by day.

Nerina: Do you have a favorite story?

Maria: Well, I have many favorite stories. I love the stories of Jorge Luis Borges. I love all his stories, as well as some of the stories of Julio Cortazar. But I have to confess that my favorite story is ‘100 years of solitude’ by Garcia Marquez. That was one of the big books that my father gave me when I was a child and I really love the story of the whole family in that book.

Nerina: What is the most important moment in the book for you? What kind of feeling do you remember?

Maria: The interesting thing with ‘100 Years of Solitude’ is that it’s an archetypal story from all the Latin American families. So in my personal history of my family, I recognize some moments of fantasy of some characters that are from both sides of my family, from my father and my mother.  I think that my favorite moment of the story is when ‘Remedios the beauty’ flies to the sky, surrounded by the blank sheets from the house.  That is my favorite part of the book. Sometimes I think that I am going to do the same, I’m going to fly to the sky and disappear!

Nerina: Thank you very much, Maria.

Maria: Thank you!

#followup with Maria de Lourdes Peréz Cruz | Music and identity

Last year, we spoke to Professor Maria de Lourdes Peréz Cruz about her work on hypertext and interactive narratives, and the implications of new technologies on traditional storytelling structures. Recently we interviewed her again, to discover more about her new project on independent music in Yucatán, and how such music is allowing local communities to share their identities.

Watch the video:
Biography:

Escuela de Humanidades Universidad Modelo,
Mérida, Yucatán, Mexico.

Thomas Arnold

Thomas Arnold
Research Associate, Human-Robot Interaction
Biography:

Laboratory, Tufts University, USA

What is robot ethics?

Recently, there have been many discussions around the ethical issues that a self-driving car would raise. How would it know if a toddler ran out onto the road, and would it react? Would it keep going to preserve the safety of the passenger? Or would it swerve and perhaps risk the life of the person inside the car, in order to save the child on the road? This question is one of many problems which Thomas Arnold tries to solve every day.

Watch the video:
Listen to the Audiofile here:
Read the transcript of Thomas Arnold's Video here

Thomas: I’m Thomas Arnold; a research associate at Tufts University, Human-Robot Interaction Laboratory, in the USA.

Nerina: What are you working on right now?

Thomas: Right now I’m working on ethics and social robots. My Master’s and Doctoral work is in philosophy of religion. I still consider myself a scholar working in those fields; I just have a very specific context for it now: to test and apply it.

Nerina: What are robotic ethics actually?

Thomas: Part of robotic ethics is really asking about the specific contexts where robots seem to be coming onto the market and being designed, and really trying to think through carefully what the robots should be doing and how they’re going to be able to do it. Whether that’s elder care, tutoring a child, public safety or repairing something; anything where interacting with human beings is going to happen, that’s what I’m interested in trying to think through.

Nerina: Why do we have to think about this?

Thomas: Recently, there have been many discussions around the ethical issues that a self-driving car could have. How do we know if a toddler runs out on the road, how the car will react? Will it keep going to preserve the safety of the passenger? Will it swerve and perhaps risk the life of the person inside in order to save the child on the road?

That’s a limited case, but none-the-less it’s a case where we have to think about what we want the system to do and why. And the reason we need to think about it is because people have different views about that.

Nerina: What is your approach?

Thomas: We are interested in taking the problem from two directions. On one case, we are interested in how people will react to robots, and how they will expect things from the robots, so we’re interested in how we as human beings will react and what our expectations naturally are in some ways. Then from the other direction, we try to use a combination of approaches, one of them being a rule-based approach. But it’s not simply a matter of rules because we also try to build-in context. We try to represent in the code, in our computational system, different contexts so that the system is able to recognize that if you’re in a kitchen and there’s a knife in the kitchen it means something different, there’s a different set of rules for handing over a knife, what a knife would be, than there would be in a subway where if someone was holding a knife you would draw a different conclusion.

Nerina: Is this a way to try to make robots more human?

Thomas: That’s a really good question. That is I think one of the struggles in our field because I feel the answer is always yes and no. Yes in that, in order to interact with a person well you need to understand when they are responding, when they are in pain, or when something wrong has happened. On the other hand, you have to be careful not to encourage a relationship or expectations that are unrealistic and end up being maybe manipulative.

If a robot intentionally looks or sounds a certain way that a person might think they are actually able to reciprocate or return some type of affection, or that they are hurt or feel pain in the same way that a person does, then that starts to be a problem. We know that already robots being used in different cases are creating bonds with people. In the US military, for US soldiers serving in Afghanistan and Iraq, there are robots that are kind of called dogs. They are shaped a little bit like dogs that detect IEDs; they detect these minds on the ground. The soldiers bond with those robots. They give them funerals when they are damaged beyond functioning, medals, and consider them colleagues in some way.

You can say, well maybe that’s a very difficult environment so maybe the soldiers are in a state of mind where they vulnerable enough to do that. But I really think that’s something that will extend beyond that context. I think people will be drawn to that, and I think it’s a serious ethical issue how we prevent those relationships from being bad for human beings, from being hurtful and deceptive. And maybe this will be the struggle but I really want robotic action to always come back to human beings as being the ones that are responsible. So that when a robot performs something well and is responsive, I would like us not to say, “That robot is human, or that robot is moral”; I would rather say the robot performed a moral action that human beings are responsible for, that our design allowed that moral action to occur.

So ultimately it comes back to us. It comes back to our ethics and our relationships with one another because I think it’s our responsibility to keep ourselves accountable for what the robots do. It will be very tricky and hard. Lawyers and legal professors are already arguing about what happens when a robot does something wrong. Is that just a malfunction? Is the designer responsible? Is the owner responsible? Those questions will be difficult but I really would want to keep as a principle that we are still always accountable in some respect for the systems that are designed.

Nerina: In the end is it a question about what is a human being? Is it a question of who we are?

Thomas: I think part of what makes us human is imagining, how do we recreate ourselves. Not just biologically, but if through craft and technologically. That’s part of what it means to be human. The downside to that are all the shortcomings we are prone to when we try to do that. I think that’s the other side of that part of what makes us human, it’s that we are also flawed in how we imagine. Sometimes our imagination lets us do wonderful things, and sometimes our imagination deceives us as to how things will actually unfold.

I think robots are just another chapter in that story. In the press you have people that want to write headlines, “Will the robots take over?” Will they take over our civilization? I think those are not very helpful because it’s another way to avoid responsibility here and now and the fact that we need to pay attention to how we are treating one another. Robots and artificial intelligence is a reflection of what we think about one another, and how we treat each other as human beings. I think it will be an ongoing debate; your question is still on the table to figure out what we are doing.

Nerina: Do you have a wish for the future?

Thomas: My wish would be that we find a way to live sustainably on our planet.

Nerina: What is life about?

Thomas: I think life is about exploring, learning from one another, struggling, and continuously asking that question of what life’s about.

Nerina: Thank you very much, Thomas.

Thomas: Thank you Nerina.

#follow-up with Thomas Arnold | AI, Robots and Humans

Thomas is Research Associate in the Human-Robot Interaction Laboratory, at Tufts University in USA and tells us about the last ideas and trends from his lab. Have a watch!

Watch the trailer:
Watch the video:
Listen to the Audiofile here:
Biography:

Laboratory, Tufts University, USA

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