As my colleague reported, the International Society for Stem Cell Research (ISSCR) has been forced to shutter the portion of its patient education website “A Closer Look at Stem Cells” that promised to investigate clinics offering stem cell treatments directly to patients. The reason? Threatened lawsuits from the very companies that the society hoped to investigate. Nature published a nice summary (subscription required) of the situation last month.
As Heidi Ledford reported in the June 28 issue of Nature, the ISSCR, which facilitates the exchange of research between over, 3,500 scientists worldwide, has suspended its website intended to help patients wade through the more crackpot claims about stem cell therapies and clinics.
All the ISSCR was going to do was to post information on what published evidence existed about claims of cures, which providers had medical-ethics oversight committees and which complied with regulatory agencies such as Food and Drug Administration (FDA) or the European Medicines Agency (EMA). Instead, some in the industry launched a barrage of legal threats at the ISSCR which, as a small scientific organization, felt it could not afford to fight even if, in the end, they would win.
This is sad. I’ve written before about how these clinics prey on desperate patients and parents, and why the ISSCR (under the then-leadership of Stanford stem cell expert Irving Weissman, MD) chose to create the website to help the public understand some basic facts and stem cells and the “therapies” these clinics claim to offer. Without any way to judge whether a clinic is reputable, I expect many more people will spend tens of thousands of dollars to pursue unproven and potentially dangerous experimental treatments. As Caplan, who directs the Center for Bioethics at the University of Pennsylvania, concludes:
So, the stem cell ‘therapy’ industry — many of whom seem more concerned with their pocketbooks than with giving patients information — and some of whom are involved in medicine that is more voodoo than science have bullied their critics into submission. If you are sick or know someone with an incurable disease, keep this in mind when considering the real value of a trip overseas to find a miracle stem cell cure.
Previously: International stem cell group provides website for patients seeking stem cell treatments, Beware: Stem cell treatments offering “miracle” cures and Stem cell researchers challenge clinics’ questionable practices
Photo by Axel Schwenke