Reports about stem cell tourism and unproven stem cell therapies abound from all over the world. Over the last year or so, also Italy had its share of pseudo-scientific enchantment for unproven therapeutic promises, as the country has indeed been trapped into a particularly harsh public controversy over the administration of scientifically unproven cell therapies by the now infamous Stamina Foundation. The latter has been offering untested intravenous injections of cellular suspensions to patients – mostly children – affected by all sorts of intractable degenerative diseases.
Unfortunately numerous and often contradictory political decisions were taken, some authorizing, some restricting access to the Stamina procedure. Equally unfortunate has so far been the lack of a serious debate on the topic. As the country was swept by emotionally loaded media reports on the case, public decisions where hardly the result of a clear vision about the relationship between science, citizens and democratic institutions.
Several Italian scientists of international renown have publicly criticized Stamina, but represented a solitary voice to counteract the apparent waves of irrationality that shook the country in the last months. Such isolation, albeit hardly surprising, is worrisome nonetheless. Let me explain why.
Science and democratic cultures
Science has a prominent role in the redistribution of benefits and risks connected with scientific and technological advancements in industrialized countries. In our political culture, however, the centrality of science to the democratic life is still scarcely appreciated. A number of troubling examples confirm this diagnosis: from the environmental disaster at the ILVA steel plant, to the controversies over the installation of Ultra High Frequency antennas in Niscemi (Sicily) by the US Department of Defense, to decades-old revolts over high-speed trains (TAV) in Val di Susa. In all those and many other cases science dovetails with citizens’ expectations, and thus enters the arena of democracy and public decision-making. Recent heated political disputes over the use of animals in scientific research are just the last episode demonstrating how science is central to Italy’s politics – probably unbeknownst to most Italians themselves and their political representatives even more so.
Trying to capture the pivotal role of science in modern-day democracies, Sheila Jasanoff has coined the expression «bio-constitutionalism» (1). This expression designates political moments and governmental practices whereby politics and the law deploy ordering strategies to make sense of new, destabilizing scientific representations and activities, new technologies and the risks associated to them. In technologically advanced societies, science and democracy mutually shape one another or, as Jasanoff says, are co-produced. The Stamina case can be illustrated as a prototypical example of co-production and bio-constitutionalism: as public decisions are taken based on conflicting views of what counts as evidence in medicine, constitutional concepts like the right to health-care and therapeutic freedom get rearranged. Science and social order are then co-produced in coping with the destabilizing consequences of Stamina’s “scientific” promises. Meanwhile the hype over the miraculous properties of stem cells leaks out of the controlled space of the scientific community producing effects well beyond science’s capacity to control them.
No doubt, in my view, Stamina’s methods lack the faintest trace of scientificity: this has to be said, and the scientific community in Italy has been rather consistent in spreading the message. But equally important would be to spot out and discuss the ideas and values embedded in the offer of unproven stem cells, as well as in patients’ requests to access them – at the expenses of the taxpayers, to be sure. What ideas of individual rights over the use of one’s body are inadvertently being uptaken in our bio-constitutional culture as the Stamina case unrolls? How is the state’s legitimacy in overseeing medical activities being imagined and re-framed? What is the place of personal desperation in public health care systems?
Those issues have been largely eluded so far. Coupled with a diffused diffidence of both politics and public opinion with respect to science, this accounts for political decisions being the result of power games and contingent interests – mostly based on one-sided media reports on the case.
As a matter of fact, one can hardly expect that the Stamina case, as other wicked science policy issues in Italy can ever find solution if policy-making only rests on judicial decisions, urgent decrees, last-minute amendments and improvised technical boards. Theses modalities are only bound to feed disagreements over already divisive issues, eroding the space of political maneuver, and thus leaving the country too vulnerable and unstable form a regulatory and institutional point of view.
It is high time science policy decisions in Italy respond to a consistent, long-term political strategy. Otherwise, the country will keep on being consumed by tensions that, not rarely, still degenerate into political violence. Italy needs institutional sites where intelligent, non-ideological nor antiscientific democratic decisions are taken. Science policy in this country must finally rest on credible institutions, reliable procedures, sound arguments and solid evidence – always revisable in the light of better arguments and better evidence. This is a pre-requisite to bridge the widening gap between science and citizens in Italy.
A new wave of intellectuals called upon
The relationship between the public regulation of scientific activities and individual expectations about science, technology and innovation is at the core of many public controversies in Italy. However, the terms of this relationship have not so far been problematized. In those circumstances, it is thus not surprising that scientists also take up the role of intellectuals, charging themselves of interpreting the reality that – through their very activities – they chiefly contribute to modify.
That could be perceived as traumatizing by traditional intellectual élites, but it should not. Life sciences and human sciences have a great deal to gain from dialogue and exchange. People in the humanities, hove to show more concern for science and its wide policy implications; at the same time, scientists should show real interest in collaborating with colleagues in the humanities. In this sense, the unfortunate Stamina case represents a potential starting point for a new wave of collaborative thinking about the ways in which science and democracy intertwine: that effort could turn out to be crucial for the progress of public debates and political decision-making in our country.
To attain a seamless and productive exchange between science and the humanities, no doubt about that, competence and interdisciplinary openness are needed. Not common currency, we must say. Luckily enough, however, among innumerable difficulties due to insufficient funding of academic research, a growing number of young scholars of scientific as well as humanistic background are moving into this direction: may them gain the scene and be left free to do their job! Imagining a renovated political vocabulary, new forms of public responsibility and scientific citizenship depend on them. And the prospects of Italian science and democracy too.
1. Jasanoff S. Reframing Rights: Bioconstitutionalism in the Genetic Age. MIT Press; 2011.