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Conversation with Itziar de Lecuona. Part 2

Itziar de Lecuona. University of Barcelona.
But we have seen that this broadness has been changing in time. So, for example, for genetic studies nowadays, everybody agrees that consent should be very wide but five years ago were much narrower. Why the informed consent is not always as wide as the researchers’ requests? My opinion is that there is a lack of debate about these issues. We say that we know what is going on in research, we foster research, we trust in research… but society is not aware at all what is happening with your samples. And in a way, some part of society is scared of what is going on with their genetic information.
And we have moved towards a more narrow informed consent systems, because, in my opinion, there is a lack debate about that. The more you know about what’s going on in research, the more you trust in the scientific system, the more you give an open consent. And, nowadays, -it’s my opinion as I said- we need to debate, and to know more about what is happening with our samples. Yeah, that’s really necessary because in many times we need to have much broader informed consent that what it used to be some time ago. But in this case, there is this idea of protection. Protection of what? Protection of the individual?
The economic value of my body or my genome… To protect the privacy, the anonymity… What has to be protected here? As always, in technology and in scientific and technological matters, there are different tensions, different potential conflicts. Of course, the first thing is to protect dignity of humans. Protecting individuals in society whether if they want to give you their samples or not. If they want to contribute to the system or not. They are free, they have freedom to decide. The most important thing is protecting human dignity and of course protecting this dignity through this data associated to the samples and the samples itself.
This is for me -and there is a general acknowledgement on that- that the principle of protecting individuals is above everything. And of course, the second one is protecting privacy. Because this data, this data associated to these kind of samples, tell us many things about us. Tell us everything about our genetic condition, about the way we behave, were do we come from… and what’s happening with us, from the biological perspective. And there are different kinds of data associated that tells us everything. To you, to me, as individuals, as researchers, as society. And other principle that should be protected and respected is, of course, solidarity. So, we are doing this, from this altruism, no?
Giving samples to be stored, to be used in research, in order to develop different treatments and interventions. Or to know more. Basic research is very necessary. And again, from the societal perspective, society needs to know more about what is going on, from the basic research to these possible applications or developments. I think that society needs to be integrated in these processes of generating knowledge, from the concept of responsible research and innovation that we can talk later. In this case, so, we have seen the ELSI issues in biobanks, but… from this biobanks, or in general from the samples we gather, we produce lots of data. So in many cases, let’s suppose that we produce whole genome sequences for the individuals.
And then, when we do a publication we are always requested to make publicly available the data. But we know that this poses also some ethical problems, so… beyond the ethical problems of biobanks, what are the bioethical problems of databases of genomic information? Well, we live in the digital era, defined by the accumulation of databases. We have been creating the last twenty years many, many different types of data, storing them in databases. And it’s time to exploit this data. And, at the same time, we move to a movement, or towards a movement called “Open Data”. Because, as I mentioned before, transparency, the principle of transparency and accountability is something that, as researchers, we deserve to society.
And that means that putting all data open, probably, is not useful at all. We need to decide what kind of data, for what purpose. And, I think that it’s time to move to a… what I call… to prove the methods of science. So, if you do a research, others should reply this research, in order to prove that it is useful, is giving us something, for the sake of knowledge. And I think that the systems of science, are not working in this sense. We need to improve these kinds of systems, to move to an open data system. To share, and decide what kind of data and for what purposes. Because having everything there, maybe is not the best solution.
But it’s true that, there’s an international trend saying that we need to share benefits, to share results, and to be more transparent, and open. The case of the CRISPR-Cas techniques, that is one example. But, there’s still too much to be done, in this sense. Not everything open could save us.

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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