quarta-feira, 12 de dezembro de 2018

ETHICS, SCIENCE & SOCIETY: CHALLENGES IN BIOPOLITICS

Minha intervenção anteontem no Pavilhão do Conhecimento em Lisboa, no Congresso com o título em cima, organizado por Maria do Céu Patrão Neves:

We are living longer and better due to science and technology. And advances in science and technology remain our best hope for living longer and better in the future. But these advances now, as before, pose ethical and legal challenges to society at large. I congratulate Maria do Céu Patrão Neves not only for organizing this meeting but also for the publication of the 12 volumes of "Practical Ethics", which is indeed a notable achievement.

We have seen in the past the arise of new ethical and legal questions. For example, the emergence of commercial aviation forced a debate on property rights: aviation would be impossible if all landowners had to authorize the overflight of their land. Another well-known example, this one pertinent in the digital age: the ease of copying and sharing music, video, and software still poses difficulties in managing copyright.

Today we live in an extraordinary moment, in which the advances that can transform our lives fall into extraordinarily complex areas. We find obvious examples of this complexity in the fields genetics, artificial intelligence (this one sometimes combined with the former), nanotechnologies, robotics, etc. Even the well-known case of climate change, where the issues at stake are now clear, is of great complexity, and requires a great effort of public communication. Ethical decisions about these issues cannot be left only to scientists since they belong to everybody.

For the public to participate in the discussion there is a need for public understanding, at a relevant although admittedly superficial level. The public needs to know enough to have an informed opinion. The general public does not need to know the details, but should know the principles, be aware of the potential and limitations of the science and technologies involved.

However, beyond the buzzwords in the media – we find genetics, artificial intelligence, etc. in the headlines - , most people have access to very little information about these advances in science and technology that can transform society. They did not learn about the issues in the school and it is not always easy learn them from the media.

How can people have an opinion without this basic knowledge? Irrational fear or uncritical enthusiasm are the options left. We see irrational fear prevailing in this world where the enemies of science are abundant (I wrote a book with David Marçal entitled "Science and its  enemies", taking the inspiration from Karl Popper “Open society and its enemies”).

The above-mentioned involved research topics have led to absolutely exciting possibilities. And it happened very quickly in the last decades. It has been too fast for its meaningful integration into formal education (curriculum change takes time). The decisions we have to make are just around the corner and not decades away.

Science communication has therefore a strategic and irreplaceable role in the public understanding of these complex issues. But science communication, like formal education, has been slow to react. In formal education, the delay is better understood. In communication science I think it is inexcusable. There are some good exceptions to this situation, but they are unfortunately isolated cases.

Progress in the last decades in the field of genetics – namely the whole sequencing of the human genome -  has been tremendous. It costed millions of dollars to sequence the first genome but mine has been sequenced for just 700$. The 100$ goal is foreseen for the near future. These advances they have largely gone unnoticed. The possibility of sequencing individual genomes poses security and data privacy issues. We are on the verge of being able to treat genetic diseases by modifying our genes. And we can do a lot more, like preventing diseases. For instance, Angelina Jolie has done a mastectomy based on genetic data. These are extremely complex techniques with tremendous ethical implications. Look at the recent case of the Chinese MD who disappeared after making an announcement about genes manipulation… And it seems to me that we were caught by surprise. We have to make up for lost time and quickly inform the public about these issues. Are we ready for this? Some associations made by scientists, like the “Living Science” Association created by Maria Mota, or the PAPS (Portuguese-American Post graduated Society) led by Silvia Curado, are fully aware about CRISP and all that. But do they have enough means to help improving public understanding of science?

Another example is artificial intelligence: I do not know of any good scientific exhibition in Portugal about it, including its applications in medicine. However, every day artificial intelligence algorithms are part of our lives. When these algorithms suggest us a book in the Amazon; or a movie to watch on Netflix. But what do we know about tese technologies? In the very near future these algorithms will be able to make important decisions for us in the field of medicine. It is difficult to explain them in common language. The head of IST, Arlindo Oliveira, has been explaining the issue in newspapers, and VISÃO, where Sara Sá diligently works,  already published some very interesting stuff on the subject, but it should be addressed more often and more widely as a topic in science communication.

The case of vaccines is also a case of ethical decisions associated with complex scientific issues. Vaccinating is not, in fact, an individual decision since It has public health implications. It is also an area where there is a lot of misinformation and lies circulating. That is why it is important to do things right to gain public trust. The recent approval of three vaccines for the national vaccination plan by the Portuguese parliament gives a completely wrong signal, by replacing specialized scientific expertise with politics. David Marçal, one of our best science communicators, wrote recently na article, in Público, stating that science should inform politics and not the other way around. I agree completely. In Portugal at the political level we see a lot of misunderstanding.

I recognize that it is very difficult for the public to understand the involved epidemiological studies used to recommend the inclusion of a vaccine in the national vaccination plan. The public needs to know this better. Transparency is a mark of science. And more transparency is needed. The right message needs to be translated into a language that many can understand. This is the role of the science communicators. Are we doing it?

Scientists should present choices. Society takes decisions, grounded on ethics. The public needs to minimally understand scientific issues to take decisions. This is essentital to the confidence in science and to have meaningful ethical debates. And this is the role of science communication. There can be no meaningful ethical debates without good communication of science.

The price of not occupying the public space on these matters with correct information is to leave that space for charlatans. This is very easy to happen. This is already happening in this time of controlled social media and of fake-news, in this time where extreme ignorance appears combined with extreme power. Carl Sagan already warned us i n 1998 in his book "Science as a candle in the dark" that “extreme power combined with extreme ignorance may explode in our face”

There is therefore an urgency in engaging science communication in the new  complex issues with major ethical implications. The time is now. I am afraid that if we start tomorrow it may be too late. But I am sure, knowing some of the people who are present in this conference, that we are going to start now. We are going to take the challenge.

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