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Digital society

Ethics for digital society

“If privacy is not respected, we are exposed to covert discriminations we will never know of, and which will condition our freedom”.

Itziar de Lecuona, lecturer at the Faculty of Medicine and Health Sciences, has been appointed director of the Observatory on Bioethics and Law of the UB (OBD), interdisciplinary research center of the University of Barcelona that studies bioethical aspects of biomedicine and biotechnology, which celebrates its 25th anniversary. In the interview, she talks about ethical, legal and social challenges of the digital society.

“The digital society demands more responsibility from all actors”.

With what purpose have you taken part in the creation of the recent Digital Pact for the Protection of People?

We are in the middle of a change. We are in a digital society where decision taking is based on the intensive exploitation of data, including personal data and the use of emerging technologies. This digital society has a dual angle: it involves many benefits but a higher responsibility for citizens and actors who can have access to these data, and therefore, having more power on us. Like we all know, with the zip code, birth date and gender, we can reidentify a high percentage of people. We were isolated data and now we are sets of data to be combined with others. My contribution to the Pact focused on ethics and privacy on digital innovation.

Digital society faces the challenge to guarantee privacy and avoid discriminations, including those that are covert through personal data access.

How can we deal with algorithm bias?

The algorithm supports decision taking. Decisions based on artificial intelligence systems have to be reviewed and corrected by humans. Amazon programmed an algorithm to help choose professional profiles which was removed because it never chose a woman. This is an example of algorithmic discrimination and gender bias. Data that feed algorithms include human bias, because they drink from reality. The challenge lies in analysing data first, cleaning them and constantly reviewing the algorithm from the trial phase to its application.

European research agendas prioritize massive data exploitation and the use of emerging technologies such as Big Data and Artificial Intelligence. What we should avoid is that, perhaps due to ignorance or due a lack of game rules, we contribute to create data markets that end up cancelling rights.

Has the pandemic had an effect on these issues?

In my work field, research and innovation in health, this tendency to exploit massive data and emerging technologies to advance in the management of the pandemic has become clear. An example of this are the prediction systems for COVID-19, which need to combine personal data stored in clinical records with image, and other personal data stored in different databases. Also, there have been proposals for the development of apps to identify positive cases and to monitor contacts that made clear the need to work on the creation of digital infrastructures that count on the citizen participation since its design.

In addition, it has been made clear that Europe does not have neither their own nor enough technological infrastructures for data management, which is necessary at the moment. This makes us dependent on big technological companies, mainly from the United States.

Itziar de Lecuona
Itziar de Lecuona, during the interview

The Observatory on Bioethics and Law of the UB reaches its 25th anniversary. What are its current identity features?

If something defines the Ovserbatory on Bioethics and Law of the UB is its ability to create co-creation processes of knowledge, to work on bioethical aspects from interdisciplinary perspective and a secular perspective based on internationally recognized human rights. Our features are the work on bioethical aspects of biomedicine and biotechnology from a scientific evidence to create contributions with impact. Thus, recommendations from the OBD opinion group have had an impact on the legislator, modifying rules; in scientific societies, contributing to create action guidelines. And last but not least, what really defines us is that we contributed to create an informed social debate, and to make people take decisions in a free and informed way.

I also think we got a place in the world, and when I say world, I mean the Ibero-American scenario. We broke the dependency of the Anglo-Saxon speech, which usually sets the tone.

The change and the classics

After years as vice-director of the Observatory on Bioethics and Law, Itziar de Lecuona takes the direction of OBD now, replacing María Casado, who “was a great professional and personal mentor”, she says. The change coincides with the emergence of new questions that are necessary to study from a bioethical perspective: “Over the next years, I think, one of the most important issues will be the impact of digitalization on people; how to treat it from an interdisciplinary perspective and put people at the center of decision making as data owners, rethink the role of state and the position of big technological companies. All of this together with the “classics of the genre”, such as bioethical questions on the beginning and the end of life, and the impact of biomedicine and biotechnology, specifically processes on research and innovation in health. Also, de Lecuona aims to continue promoting the recently opened research lines such as application of Big Data and Artificial Intelligence in health and human nutrition. Last, within the frame of postgraduate studies the OBD offers, among the priorities is to strengthen the “Ibero-American knowledge community”, created regarding the Master’s degree on Bioethics and Law at the University of Barcelona to have a voice and treat problems of the area.

A hobby: Dancing, specially jazz and flamenco.

A book: The First Century after Beatrice, by Amin Maalouf

A philosopher: Lately I have been Reading Michael Sandel. A must: Javier Sádaba, María Casado and Ramón Valls.

A wish for the post-pandemic society: We must avoid falling into a wilder capitalism than the one we have now, and especially, the tendency to commercialize personal data.

Maria Casado and Itziar de Lecuona
Team of the Observatory on Bioethics and Law.
Team of the Observatory on Bioethics and Law.