The IFOM-IEO campus and the challenges to democratic participation in scientific progress

Who decides which scientific projects should be funded? And on what basis? And what happens if scientific projects go awry? Who should be held responsible: the scientists, the politicians, both or none of them?

The public accountability of scientific-technological innovation is the key issue of contemporary democracies, as pointed out by Giuseppe Testa, principal investigator at the IFOM-IEO campus and group leader of the ‘Epigenetics of genome programming and reprogramming’ laboratory. Giuseppe Testa is a very rare, if not unique, ‘chimeric’ scholar, publishing at international level both in science [1,2] and in bioethical studies [3,4]. One of his main interests is the public policies and regulations that should be implemented concerning new biotechnological advances, such as induced pluripotent stem cells.

The fourth ESOF- Euroscience Open Forum - held in Turin July 2-7th at the Lingotto- was the occasion for Testa to bring together a panel of international experts to discuss the issues of the democratic participation to scientific progress.

ESOF was created by Euroscience, an association dated 1997, and counting more than 2,000 members from over 40 countries, including scientists, researchers, politicians, teachers, graduates, entrepreneurs and, in general, anybody interested in science and technology.

ESOF meetings  (every two years, next in Dublin 2012) are unique in their ability to bring together students, young researchers and scientists, academics, journalists and policy makers to explore the frontiers of scientific research and innovation and their impact on society.

In particular, the panelists invited by Testa to discuss the “Challenges to Democratic Participation in Scientific Progress” were confronted with the case of the life sciences, where, in Testa’s words, “the debate is still dominated by a law-lag or policy-lag narrative, according to which science proceeds down an inevitable slope of innovation with institutions and citizens in the equally inevitable downstream position of resisting or accepting change at the bottom of the slope”. But if scientific and technological development needs to be publicly accountable, then the task of the panelists becomes to discuss and create concrete proposals as to how participate in scientific progress, still an unresolved issue of democratic societies.

The IFOM-IEO campus was protagonist of the workshop organized by Testa, numbering among the speakers Giovanni Boniolo and Matteo Mameli, respectively the Director of the "Life Sciences: Foundations & Ethics" (Folsatec) PhD program at IFOM-IEO and member of the permanent visiting staff of the doctorate (besides being senior Lecturer in Philosophy at King's College, London).

For the last ten years the IFOM-IEO campus has been at the frontier of innovation in science and molecular medicine. More recently, since the setting up of the Folsatec PhD program in 2007, the IFOM-IEO campus has been also at the frontier of innovation in Bioethics, Philosophy of Life Sciences and Science & Technology Studies. Just to mention one, a recent experiment that was born by the exciting collaboration of scientists and philosophers/ethicists at the campus has been the creation of a deliberative ethics forum (which will soon be available as an online tool on the IFOM-IEO website, www.ifom-ieo-campus.it ) as a concrete strategy to engage citizens in the democratic participation in scientific progress.

The deliberative ethics project, presented by Boniolo at the ESOF workshop, is based on the idea of the “growing request for public engagement in decision making that concerns biosciences”, though being widely acknowledged, has so far “received only considerable lip service”, and that the public “has little recourse but to trust the capacity of ethical committees to do their work and to rely on the statements contained in ethical codes” [5]. As this situation is deemed to be unsatisfactory, members of the IFOM-IEO Campus have proposed and instituted something different, namely a set of deliberative ethics guidelines that should serve the dual purpose of establishing a minimal set of standard rules for bioethical debate and of ensuing decision-making process in the life sciences. In particular, the guidelines want to serve as real instruments to foster public engagement and public awareness on the ethical issues involved in biomedical research [5].

Matteo Mameli from King's College stressed the importance of an often underestimated aspect of scientific progress, namely the need for participants in scientific and clinical research, and the positive obligations that we all have in terms of contributing to its advancement and progress.

Among the other panelists of the workshop were Massimiano Bucchi, Professor of Sociology of Science and Sociology of Communication at the University of Trento; Herbert Gottweis, Professor at the department of Political Science, University of Vienna, and Christine Hauskeller, Senior Lecturer at the Exeter ESRC Centre for Genomics in Society and leader of the project Stem Cell Research in Context; A Comparative Study on the Dynamic Relationship Between Science, Medicine, and Society.

Those among you who are interested in this topic are warmly invited to attend the interdisciplinary course in Law, Society, Policy and Biomedicine - also organized by Giuseppe Testa for the Folsatec PhD Program - that will be held from September 13 to October 8 at the IFOM-IEO campus with keynote teachers: Helga Nowotny, Director of the European Research Council; Sheila Jasanoff, Pforzheimer Professor of Science and Technology Studies, Harvard Kennedy School of Law, MA; Richard Sullivan, Professor in Health Policy at King's College, UK;  and Andrea Monti, lawyer and current chair of the Italian Biotech Law Conference.

FOLSATEC classes are always strongly interactive and thought-engaging, and are often the cradle for new experiments in democratic participation in scientific progress, such as the deliberative ethics forum presented above.

References

1. 1.      Burgold T, Spreafico F, De Santa F, et al. The histone H3 lysine 27-specific demethylase Jmjd3 is required for neural commitment. PloS One 2008 3(8): e3034.
2. 2.      F. De Santa, M. Totaro, E. Prosperini, et al. The histone H3 lysine-27 demethylase Jmjd3 links inflammation to inhibition of polycomb-mediated gene silencing Cell 2007 130(6):1083-94.
3. 3.      Testa G. What to do with the Grail now that we have it? iPSCs, potentiality, and public policy.  Cell Stem Cell 2009;5(4):358-9.
4. 4.      Testa G. Stem cells through stem beliefs: the co-production of biotechnological pluralism. Science as Culture 2008; 17(4): 435-448.
5. 5.      Boniolo G, Di Fiore PP. Deliberative ethics in a biomedical institution: an example of integration between science and ethics. J Med Ethics. 2010;36(7):409-14.