I have recently been forwarded an article by Arthur Caplan, director of the Center for Bioethics at the University of Pennsylvania, commenting the negative effects of fraudulent uses of stem cells: “Stem cell clinics ripping off patients, bullying scientists” http://www.msnbc.msn.com/id/43760409/ns/health-health_care/. No news, I said, since Luca Coscioni Association, who has been advocating for the promotion of freedom of scientific research and the ascertainment of civil and political rights of patients and people with disabilities, has been concerned for many years with this matter and has been challenging this worse-practice through political and information initiatives worldwide. Unfortunately there are bad news: "Worse, one of the few reputable Internet sites that could set you straight about the knowns and unknowns and lack of oversight by anyone of this rapidly growing marginal world of medicine” – says Caplan – “is no longer there. Lawyers representing some of the industry clinics - most of which are operated in countries with weak medical oversight - began threatening the scientists at the International Society for Stem Cell Research (ISSCR), a nonprofit organization, with expensive lawsuits".
The initiative referred to is "A closer look at stem cell treatments", which was launched to help evaluate claims about stem cells treatments. I have checked and it still works, that is guidelines and a patients’ handbook including a series of questions, to ask a clinic from which one is considering receiving a stem cell treatment, are still available. Nonetheless here http://www.closerlookatstemcells.org/Submit_a_Clinic.htm you can no longer submit a clinic to verify its compliance with some transparency parameters provided by ISSCR in collaboration with concerned scientists. Once you could check whether clinics had provided ISSCR with evidence that appropriate oversight and other patient protections were in place for the treatments they offered. On the contrary “clinic submissions are not currently being accepted” now.
Lawyers may reply that it is somehow right to avoid defamation. Since Luca Coscioni Association advocates for researchers and patients, it is doubly concerned with this lack of transparency from some clinics and any worse effects of it. In the past we happened to address patients to ISCCR website. What will they do in the future? They will be a little more on their own. Researchers will be more and more affected by frauds deceiving public and menacing their thrust in science and scientists. For these reasons we express our full support to ISSCR and its initiative and are available to help it as needed.
For further info visit www.lucacoscioni.it, www.freedomofresearch.org
Member of Luca Coscioni Association and
Coordinator of the World Congress for freedom of scientific research