Scientists combat pseudoscience
Research and health care both function best in a country where science policy decisions are subject to transparent rules and based on scientific evidence. Otherwise, pseudoscience and capriciousness soon flourish. A glance at Italy shows just how quickly things can deteriorate. By Mirko Bischofberger
(From "Horizons" no. 104, March 2015)
There are still sceptics – even in the scientific community – who question the connection between AIDS and HIV. And scepticism is their good right. But gradually, even this minority has been won over to the general view by means of properly conducted studies and watertight arguments. Because here, as so often elsewhere, scepticism is based on ideas that cannot stand up to scientific scrutiny. All the same, there are regrettably still cases all over the world where politicians and the public are taken in by the hard sell of scientific fictions. Even in our neighbour Italy, just two hours by car from Bern, we can find repeated examples of a skewed approach to science, especially in the field of medicine. But Italy is also a good example of how important it is for re-searchers to engage in the political debate about science – and it also proves how successful they can be.
In 1997, for example, the Italian media reported a new miracle therapy against cancer. This so-called ‘Di Bella multi-therapy’ – a cocktail of vitamins, drugs and hormones – was developed by Luigi Di Bella, a professor at the University of Modena. It was devoid of any scientific basis, with no sound research publications or clinical studies to back it up. But the media resonance was so successful and the pressure from the public so great that several judges ultimately decreed that it should be offered in local health centres and made accessible to everyone. Many patients were treated accordingly, even though the therapy proved to have serious side effects. Only after recognised cancer researchers in Italy became heavily involved did the then health minister decide to apply the usual rules and demand a clinical evaluation.
A more recent case was in the field of stem cell research in Italy. A dubious company with the name ‘Stamina Foundation’ began offering a therapy using stem cells in 2009. Its founder was one Davide Vannoni, a psychologist who had never published anything about stem cells in any scientific journal but nevertheless promised his patients that injecting these cells would ameliorate several illnesses at once – including Parkinson’s, muscular dystrophy and spinal muscular atrophy. He even claimed it might heal them. Although its supposed benefits had not been tested, just as its risks had gone uninvestigated, the therapy nevertheless found its way into several health centres. In the years thereafter it was used to treat hundreds of patients. Vannoni was also involved in setting up a stem cell company in Switzerland (see box).
No right to miracle therapies
When the stem cell expert Elena Cattaneo from the University of Milan learnt of this therapy, she brought the whole story into the open. Together with other specialist colleagues, she wrote articles for the daily press and for specialist journals, raised the topic at conferences, had telephone conversations with politicians, gave interviews and exchanged information with patient organisations and hospitals. She and her research colleagues also received support from the Japanese Nobel Laureate and stem cell pioneer Shinya Yamanaka. In 2013, the Italian parliament decided to investigate the therapy by means of a clinical study. This decision was controversial because there had been none of the usual preliminary studies that are the prerequisite for launching clinical tests – such as experiments on mice that could give an indication as to whether a therapy might work on humans. All the same, a clinical study would be able to unmask the therapy definitively as nonsense. In the end, the study was carried out and cost the Italian state 3 million euros. In May 2014, the European Court of Human Rights decreed that patients have no right to a therapy that has no scientific basis. The Italian constitutional court endorsed this judgement. This means that in future, miracle cures such as that of Di Bella can be kept in check until there is scientific evidence that they actually work.
Senator for life
Italian procedures for allocating research funds and science jobs are also often arbitrary. Roberto Perotti, who teaches at Columbia University in New York and at Bocconi University in Milan, has collected many examples of Italian research nepotism and put them into a book. One prominent case is that of Fabrizia Lapecorella, an economist who applied for a professorship at the University of Bari in 2002. She was awarded the post, even though she had not published a single article in any of the 160 most important international journals in her field, nor in any of the 20 most important Italian journals. Nor had she ever co-authored a book. The applicant who was the runner-up for the post had a doctorate from the London School of Economics and ten publications in the world’s most important journals. Today, Lapecorella runs the Italian government’s Department of Finance.
Cattaneo has herself experienced the arbitrary nature of research funding in Italy. In 2009 the national Ministry of Health announced that it was offering monies for multi-year stem cell research. However, at the last moment it decided to exclude funding for research on stem cells from human embryos. No scientific reasons were given for its decision. For Cattaneo, this meant that she was completely barred from the application process. Instead, Vannoni’s Stamina Foundation was given the state funding in question. Cattaneo filed a complaint with the courts in order to con-test this award. A decision is still pending.
The cases mentioned here show that we need researchers who are prepared to argue in favour of transparent, evidence-based science: researchers who are prepared to go public about it and take an active role on the political scene. This is particularly the case in the medical field, because it’s the health of patients that’s at stake. But researchers can also achieve personal success with such a commitment. Thanks to her political involvement, Cattaneo was nominated as a Senator for Life by the Italian President in August 2013, along with the Nobel Prize Laureate for physics Carlo Rubbia, the architect Renzo Piano and the conductor Claudio Abbado. She is now the youngest Senator for Life in Italian history and campaigns in the Senate for decisions to be made on the basis of scientific evidence.
Mirko Bischofberger is a scientific advisor to the President of the Swiss National Science Foundation.
Stem cell therapies in Switzerland
In Switzerland, too, medical treatments are carried out without any basis in scientific fact. For example, there are people who promise to heal neurological disorders by injecting completely untested stem cells. The company ‘Beike’ in Lugano offers a medical transfer to China where patients can be given these stem cells – all at a cost of CHF 50,000. And the company ‘Biogenesis Tech’ (also in the canton of Ticino) has promised the same; it was co-founded by the same Davide Vannoni who set up the ‘Stamina Foundation’ in Italy. ‘Biogenesis Tech’ is still listed in the commercial register as an active company.