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Skip to 0 minutes and 12 seconds So in some cases the scientific journals, they request all the data, to be able to reproduce the results you may want to publish. So in some cases there are some conflicts, in making everything available and maybe the privacy of the individuals. Yes, but then we move to the core issue, called research integrity. We need to understand that if we do research is for something that is for society. And then, all these systems of replicability and all the methods of the scientific system should be put into practice. And then move to an open data system.

Skip to 1 minute and 0 seconds But I think that we are also witnessing a change, in how the ethical, legal and the social issues are developing in, called responsible research and innovation. Ethics is very important. Ethics, research ethics committees are there. But also, the way that public, the way that society, the way that patients, in a way, involved or are engaged in these processes of scientific decisions or developing research projects. And this is one of the main lines of the European Union. When you ask for funding, they ask you to show how your project is making these six agendas. Open Access, scientific education and also governance and public engagement.

Skip to 1 minute and 47 seconds So, how do you integrate your population, your target population, in the inception and the development of your research project. And for me, this is a way to find the balance between these questions that you posed. And in this balance, a difficult part is what is being seen from the scientific community… to which extend do they, the scientific community, is open to the ELSI aspects, or to which extent… Because I’ve seen many times people blaming people in ELSI, just slowing down and making things complicated and difficult. To which extend scientists are open to this ethical, legal and social issues? Well, maybe I will make a critique but, from the moment that you should apply for funding, you take ethics first.

Skip to 2 minutes and 41 seconds But, at some point it’s only ticking the box. Ok, I will respect the autonomy; I will respect the law of confidentiality of my country, etc. But later, when you move to the real scenario, you see that there are only words. But, right now things are changing, because I think that we have improved in different ways. And if you see, in May, this year (2018), the new ruling of data protection at the European level is coming into force, and is introducing a very interesting concept form the point of view of the ELSI aspect that is called “the evaluation of the impact of your work, as a scientist, in the human rights of the population involved”.

Skip to 3 minutes and 26 seconds You have to describe what are you going to do with the data, how are you going to protect the data, who is going to use the data, for how long; where the data are going to be stored… and then, accountability comes. In all stages of the research project you have to be transparent, and you have to share the information with the individuals that are giving you the data. So this is a new way to move to a more dynamic relationships and involvement in research. It seems that you have to pay a lot of attention on the behavior of scientists. Is there openness within the community or are you seen as someone that wants to have surveillance on them?

Skip to 4 minutes and 12 seconds Well, I think that in our society right now, nowadays, people is more conscious about what is going on with their data. For instance, at big data scale. Everybody is talking about big data, big data uses, big data exploitation… And people are starting to take care about what it’s going on with their data. And that their data, are defining them in a way. So, scientists are integrating these considerations. And I think that we are moving to a more symmetric relationship. Because in the past, -from the paternalistic point of view- until now, at some point citizens and individuals were very apart from this decisions. And right now, I think that the scientific community is moving towards looking at the interest of individuals.

Skip to 4 minutes and 56 seconds And I think we are on the good way to find solutions. But the thing is, from the academia, -in my opinion and as I see every day, in the school of medicine, for instance- students are looking for a new way to understand the problems of research integrity, of ethics. They do not want more theoretical frameworks, no more theoretical lessons. They want to know the problems, the worse problems that happen, but today; in order to find the solutions. And they are demanding new processes of learning. We need to look at the cases and to find solutions, as you mentioned before. Okay.

Skip to 5 minutes and 38 seconds So, we have seen today how these ethical, legal and social issues are really necessary and essential for the research in biomedicine, for biobanks and for databases.

Conversation with Itziar de Lecuona. Part 3

Itziar de Lecuona, doctor in law, professor in the Department of Medicine of the University of Barcelona, and Deputy Director of the Bioethics and Law Observatory, (Unesco Chair of Bioethics) at the University of Barcelona.

Her research interests include the bioethical, legal and social aspects of research in humans, and training in ethics integrity and responsible research and innovation.

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