Conversation with Itziar de Lecuona. Part 1

Today we have with us Itziar de Lecuona. She is doctor in law, working in bioethics and law, and she’s professor at the department of medicine of the University of Barcelona, and deputy director of the Observatory of Bioethics and Law, (Unesco chair of bioethics) at the University of Barcelona. Her lines of research include the bioethical, legal, social aspects of research in humans, el que normalment anomenem els temes ELSI; formació en la integritat ètica i investigació i innovació responsable. what we usually call ELSI issues; training in ethics integrity and responsible research and innovation. So, she’s the person to talk on the issue of today, which is the ELSI aspects related to biobanks and related to genetic databases.

This is an issue that is important today, but is going to increase a lot in future years, having lots of biological samples in biobanks, having huge amount of genetic and biological data for many humans, in databases. So this raises lots of interesting questions that Itziar is going to respond today. So Itziar, which ethical, legal and social problems pose to have biological samples in a biobank? So, the idea of creating biobanks is to produce precision medicine, to foster what we call translational medicine from bench to bedside. And we need these samples to be stored and to be used to foster this medicine.

The ethical issues could be the respect of the principle of autonomy autonomy of the freedom to decide of individuals, what to do, and also, one main principle in society, that is, the protection of privacy and intimacy; and also confidentiality of data. But there are other principles, such as transparency or accountability, that we need to take in to account when creating these facilities, these biobanks, and using these samples. From the legal perspective, we need to take into account that protecting individuals, the idea of prevailing in the interest of individuals among science or society is very relevant. But also, there are other principles such as non-discrimination, -regarding the genetic data that we are storing or using- and the idea of solidarity.

From the social perspective, as you mentioned the social issues, we need to understand that these biobanks have been created with the altruism of individuals of society, in order to give them as fast as possible better interventions and better treatments. It’s very clear that today we cannot have in our labs any sample, -human sample of course-, without what we call informed consent. What is informed consent and why is it so necessary? That’s true. Informed consent is the tool for making real this principle of freedom to decide and autonomy, in order to decide what to do with our samples; biological samples and data associated.

We have the right to decide whether or not to give to a line of research, to give as a general rule to any kind of research and also to revoke this consent. And we need to take into account that in different systems we have different models of informed consent. From a broad consent to anything that could be done in research, and other types of consent that are very narrow in order to say yes only to one specific project. And we need to balance, to extract the balance between this principle of autonomy and informed consent with -of course- the freedom of research that any researcher has in our societies.