Speech at the EU Preparatory meeting of the Third World Congress for Freedom of Scientific Research

First, I want to thank everybody for attending this meeting. I contribute to this interesting discussion by showing some data and by sharing some ideas on how freedom of research is connected to democracy. Since the beginning of this meeting, you have seen on the screen my first slide. It is a snapshot of the website freedomofresearch.org, which is the website of the World Congress for Freedom of Scientific Research. I have been working on the website for quite some time now as part of a larger project aimed at creating a Freedom of Research Index, which is the topic of my talk. I will show you something from the website. You are also welcome to surf it as I talk. We have been working on this idea of an index of science freedom (or freedom of research and freedom of treatment) for a while. I actually came on board half way through the ten-year history of the World Congress. In fact, I have been working on this project for five years. While still a work-in-progress, the project is shaping up and getting ready to be launched.

I want to open with a quote by Professor Corbellini, who is the author of the interesting essay: “Science, Society and Democracy – Freedom of Science as a Catalyzer of Liberty,” which appears in Scientific Freedom: An Anthology on Freedom of Scientific Research1, an edited volume that collects essays of individuals who are connected to this Congress. In his essay, Corbellini makes a point that I think Marco Cappato just reiterated — the connection between democracy and freedom of science. While democracy is an important way to understand whether or not we can advance scientifically it is also true that science can be incorporated in democratic thinking. So the quote is: “Science provides individuals with autonomy, self-determination and critical thought, which are the basis for protecting democratic thought and political pluralism”. This is exactly what we mean when we say that the freedom of science encourages rather than threatens democratization. As you can see from the handout in your package, tomorrow we will work on thinking about proposals for the third session. The first one is defending research from fundamentalist threats. The idea of creating an index is a way of thinking about the ingredients, the building blocks of freedom that must be preserved in the face of such attacks.
I and the other collaborators working on the project have been concerned for a long time with question of measurement: how are you we going to build this index? How are we going to monitor freedom? What is freedom of research? To resolve at least in part these dilemmas, we adopted a rather simple definition of freedom. Freedom, we argue, is a matter of degree of opportunities and abilities to engage or not to engage in a certain actions. It is based on MacCallum’s definition of freedom as a relationship between actors, actions and conditions. In our case, “actors” are researchers and patients; “actions” consist of engaging in research, providing treatment, and accessing treatment and research findings; and “conditions” overlap with the legality of certain actions. The conditions are the critical element of freedom because their measurement allows us to carve out am observation point that enables us to understand whether or not actors enjoy or not freedom to engage in certain actions. The degree to which a given regulatory environment permits certain conducts is the measure of freedom.

Conditions are above all obstacles and opportunities for action. In this light, we identified the key actors and actions connected in four areas of human activities in which science freedom can be expressed (assisted reproduction, abortion, research with embryos and embryonic stem cells and reproductive cloning, and end of life decisions); key conditions associated with these actors and actions; and identified the range of possible outcome with regard to the impact of the condition on actors and actions. We assigned a numeric value to each outcome in order to obtain a cumulative score for each area of science freedom measured. I will now show you the process directly on the website. I am going to use Belgium as an example, in part because it is the country hosting this meeting but also because it scored at the top of the index. For each country, the website reports the four areas of interest (there are more areas but we decided not to use them at this stage). The possible outcomes are presented in the form of a question. For each of the questions we identified answers and provided numbers to each answer. Some questions call for yes/no questions; some others are less straightforward.

While our goal is collect from all countries, we were able to collect sufficient data only for 42 countries. One of the challenges proved to be the ability to find data for many countries. Sometimes the reason why there are no data is because there is not a regulatory framework in that country especially in the fields of technology, end of life, and research on stem cells. It is easier with abortion because most of countries have a regulatory framework for that. In other instances, there is no legislative data because some actions are totally banned. This is the case of gay couples’ access to assisted reproduction. We know that homosexuality is prohibited in 78 countries around the world. As a result, there is no data on access to reproduction for gay couples because homosexuality is prohibited in the first place. Because of these challenges, building the database proved to be difficult. Uneven development of regulation is in fact a major challenge. Nonetheless, we were able to identify data for a certain number of countries and build a partial science freedom index, as shown on the website. The countries that are currently listed in the index are those with at least 70% of data completion. These countries are ranked based on points collected for each area and a cumulative score and are divided in three groups: free, less free, and not free. Setting the boundaries of each group is a matter of judgment. We have been working on fine-tuning that. It is a work-in-progress, but I believe we are not able to set those boundaries at the right place as evidenced by the fact that there is a balanced representation of countries in each group.

Looking at the map it is easy to see how results show up. Sweden and Belgium score at the top.
In Europe there is a distribution of free countries and of less free countries, with Belgium, the Netherlands, England and France being more free and Norway, Germany, Switzerland, Italy and Austria being less free. We have data also for parts of the Arab world, some Asian countries and Latin America. The study is thus is becoming a more and more a global one.
What are the potential uses of this study besides generating a science freedom index? One is to organize data in a way that highlights differences among countries. This way, national regulations can be placed in a context.

Second is to create an updated database of regulations impacting health research and treatment. There is no such database. While there is plenty of data on abortion and some data on stem cells, data on the other areas is hard to find and hardly systematized. To this end, we are interested in having an up-to-date database of laws and regulations that can be accessed openly by users throughout the world.

Third, we believe that this database can provide insights on the obstacles to freedom of research and treatment and thus be used by advocates in identify critical areas that needs reform in a certain country. It is a tool that can be used when considering policy changes.
It is also a tool that contributes to photographing and recording policy change. Important changes have already taken place since we started. One is the expansion of rights to lesbian, gay, bisexual and transsexual people around the world. In the last five years, they have gained more and more access to reproductive technologies. There have been remarkable changes since we started. Another example of change comes from Egypt. In the post-Mubarak world, stem cells research has been revived. A national institute has been opened and now there are talks about revisiting the prohibition of using embryonic stem cells because only adult stem cells can be used. So, political changes have an impact on the way science is made and the opportunities that scientist enjoy in the free pursuit of new knowledge. It is thus important to preserve evidence of such changes and, in my opinion, this database offers the possibility of documenting change and generating temporal analyses of these data.

A further use is to generate insights on the link between science and democracy by comparing our data with indexes and maps produced by other organizations in other areas of human activity. In this talk, I will highlight three. First, the map of the world based on freedom of the press compiled by Reporters Without Borders. You can see that there is a great deal of overlap between the science freedom index and the freedom of the press index. Europe looks very similar. Italy, for instance, lags behind many other countries. Austria as well. Germany and Norway are not. The other side of the Mediterranean would have similar problems. Brazil and Colombia are identified as less free or not free countries and they don’t enjoy the same level of freedom of press. This is also true for the Philippines which have been affected by devastating events. Japan would be a free country and South Korea would be half way. So the freedom of press definitely has connections with freedom of research. Another interesting map is that of the Freedom House. Here we have tried to do something different — that is pulling out data and put them on charts. There is a lot of overlapping between the third and the fourth columns between our index and the Freedom House index. In the slot of free countries, they enjoy both freedom of research and freedom of press and freedom of speech. As for less free countries there are also figures about the bottom half of the ranking. What is interesting to focus on too is the outlier. There are a lot of countries which are not free when it comes to freedom of press, but which are more free in terms of other kinds of freedom. China is a good example of a country where freedom of press is not particularly advanced but, at the same time, there is a lot of scientific research going on and quite a lot of freedom to engage on that. This poses interesting questions of links among science, freedom of speech, and economic liberties. Finally, the last slide shows data from the United Nations Development Programme report, which is the most comprehensive of these rankings. Again these data reproduce similar patterns. There are however some outliers. One study I have not reported is a ranking about economic freedom. Interestingly, here there data are more divergent. What we consider the measurement of a liberal economy is not necessarily the measurement of a liberal society when it comes to engaging in freedom of thinking in investigating. So there is an interesting connection between economics and politics coming out.

To conclude, I think these visualizations contribute to the debate on the role of science in the world. Why do we engage in science? How can science be important to our society? Hopefully in the next five months we will have a more grounded and comprehensive report which will incorporate some of the ideas that are generated today. We may also work on the governance structure of the project as the project becomes bigger and more organized. Finally I would like to acknowledge the work done over the years by many collaborators, and in particular by Carmen Sorrentino, Elizabeth Dzialo, and Joe Robertson. Thank you very much for your attention.