Vignettes@STS.Next.20

Parents of children suffering from rare diseases, who appeared in various public fora, including the popular Italian TV show ‘Le Iene,’ to protest the government’s closure of clinics offering stem cell therapies, acted neither as patients nor as consumers; instead, they acted as outraged citizens.

When Italian science makes it to Nature, the prestigious British science journal, it is hardly ever good news for Italy or Italian science (1-3). Often, such news does not describe scientific breakthroughs, but interactions between Italian science and the Italian state. Written in concerned if not outright dismissive language, such reports tend to say more about how Nature thinks political authorities should deal with science than they do about why Italian authorities choose to act as they do. And, yet, it would be rash to dismiss these articles as quickly as they dismiss Italy. For one thing, they remind us about the importance of actors such as states.

Let us turn for instance to Alison Abbott’s March 26, 2013 report about “Stamina,” an Italian foundation that offered dubious stem cell therapies to patients, mostly children suffering from serious illnesses (3). The availability of such treatments, offered to patients in the absence of compelling evidence of their safety and efficacy and outside of standardized research protocols, was not new. Over the past couple of years, clinics offering dubious therapies have mushroomed around the globe, creating concerns for stem cell scientists, bioethicists, and regulators, who see the lives of patients as well as the future of the entire stem cell field placed in jeopardy.

What set the Stamina case apart from the others, effectively transforming it into a case about Italy rather than about science, was that Stamina had apparently received some sort of official political blessing from the Italian authorities. In Abbott’s words:

Clinics that offer unproven stem-cell treatments often end up playing cat and mouse with health regulators, (…). In Italy, however, one such treatment now has official sanction. The country’s health minister, Renato Balduzzi, has decreed that a controversial stem-cell treatment can continue in 32 terminally ill patients, mostly children — even though the stem cells involved are not manufactured according to Italy’s legal safety standards. (3)

Abbott’s otherwise very informative article did not make an effort to understand why Balduzzi decided to allow the compassionate use of these therapies. She did not give any voice to the health ministry, but focused instead on the comments of concerned Italian scientists. For the rest, the article depicted an assemblage of patients who failed to understand science, irresponsible journalists who misinformed publics, and state authorities that listened to popular demands rather than to scientists and their expert advice. The article, in short, presented the “deficit model” of lay actors that most STS scholars are familiar with—the model that sees publics (and policy makers) always in deficit because they fail to understand science properly and, as a result, act irrationally.

While it is tempting to look at this article through the same “deficit” lens that the article itself applies to Italy, merely reversing the accusation does not seem a promising strategy. It may be more helpful to take Nature’s framing seriously, but to add a little bit of complexity.

Perhaps, indeed, the Stamina case was all about inappropriate state action – but inappropriate in political rather than scientific terms. After all, as Abbott describes, the case gained notoriety when Italian health authorities made an effort to close Stamina’s doors back in 2012. Then, parents of children suffering from rare diseases contested this apparently unmotivated act of law enforcement. Some appealed to the courts. Others appealed to the President of the Republic via Facebook, or assembled in the streets.

Parents of children suffering from rare diseases also made it to Le Iene, a famous weekly TV show, that dedicates a lot of time to the failures of the Italian state, often with a big dash of irony. The prominence of this very stage suggests that Italian citizens were caught up in an episode of what Sheila Jasanoff describes as “civic dislocation,” that is a radical “mismatch between what governmental institutions were supposed to do for the public and what they did in reality” (4). In such moments, citizens often turn to non-state institutions for the trust and reassurance that they ordinarily expect from the state. Italian citizens had not necessarily failed to understand the science, in which they were perhaps not even particularly interested. More clearly, they did not understand the arbitrary actions of the public authorities and contested them in consequence. They acted neither as patients nor as consumers; instead, they acted as outraged citizens.

The concerns of Italian scientists, so well represented in Nature, should not be ignored. No doubt, they should have a say in what therapies are offered to people with illnesses. Putting the Stamina case in the context of Italian politics, however, suggests that stem cells are not only the property of science and scientists. They are also common property, since state authorities – and citizens and publics along with them – participate in envisioning how scientific advances should be harnessed in caring for the bodies and lives of citizens. The Nature article seems aware of this dimension of what Jasanoff and others have termed “bioconstitutionalism” (5). Yet, the article is based on a tacit assumption about how science ought to be enrolled in health care, taking it for granted that investing in scientific research and translating scientific advice into policy are the only ways in which a state should cater to citizens’ needs. And, yet, the Stamina story suggests that this assumption should not be naturalized too quickly. Other visions and settlements exist, for example, states may seek public input on how to balance the risks of experimental remedies against the demands of desperate citizens. Dismissing such balancing acts as mere irrationality might backfire in a future in which science depends on finding common interests with citizens.

Keywords: stem cells; public understanding of science; civic dislocation; bioconstitutionalism

References:

1. Abbott, Alison. “Italians sue over stem cells,” Nature, 460 (19), doi:10.1038/460019a, 2009.
2. “Shock and law.” Nature, 490: 446, doi:10.1038/490446b, October 23, 2012.
3. Abbott, Alison. “Stem-cell ruling riles researchers,” Nature News, 26 March 2013.
4. Jasanoff, Sheila. “Civilization and madness: the great BSE scare of 1996.” Public Understanding of Science, 6 (3): 221-232, 1997
5. Jasanoff, Sheila, ed. Reframing Rights: Bioconstitutionalism in the Genetic Age. MIT Press, 2011.

Further reading:

• Jasanoff, Sheila, ed. Reframing Rights: Bioconstitutionalism in the Genetic Age. MIT Press, 2011.
• Ruha, Benjamin. People’s Science. Bodies and Rights on the Stem Cell Frontier. Stanford University Press, 2013.