Leading stem cell researchers from institutions around the world are issuing warnings about unproven stem cell therapies being marketed on the Internet and have launched a website to educate and protect patients seeking such treatments. Often conducted outside of the United States, most of these therapies have little or no benefit — and can be dangerous as well as costly.
"Many people are going into the hands of predators," said Irving Weissman, MD, director of the Stanford Institute for Stem Cell Biology and Regenerative Medicine and immediate past president of the International Society for Stem Cell Research, or ISSCR. "They often mortgage their homes or borrow money to go abroad for these so-called treatments. They are away from their loved ones when they should have been together during the last months or years of their lives."
Weissman is the senior author of a report on this subject — "Patients Beware: Commercialized Stem Cell Treatments on the Web" — to be published in the July 2 issue of Cell Stem Cell. The report, which analyzes the potential risks to patients and outlines practices and guidelines to assess the validity of Internet claims, was produced by an ISSCR task force that he helped to establish.
Speaking at the ISSCR's annual meeting in June in San Francisco, Weissman, whose term as the group's president has just ended, told the audience of nearly 4,000 stem cell scientists, "If you Google 'stem cell therapies' you will find over 200 companies, some of which have your names as advisors, that claim they can grow stem cells, inject them back into the patient and cure almost any condition."
The use of quotes from well-regarded stem cell scientists and physicians is not uncommon on unscrupulous Internet websites, according to Weissman. Frequently these experts are unaware that their names are being used, and the quotes are fabricated or taken out-of-context from some other source.
As a result of the task force's efforts to publicize these and other abuses, the ISSCR recently launched a publicly available website (www.closerlookatstemcells.org) where patients can learn more about stem cell biology, learn what questions to ask of potential clinics and even submit a specific website for further investigation by the ISSCR.
When a company or clinic is submitted for investigation, the ISSCR will evaluate whether a medical ethics committee is involved to protect the rights of a patient and whether the proposed treatment will be supervised by an official regulatory body such as the European Medicines Agency or the U.S. Food and Drug Administration. It will provide the results of the inquiry on the patient website.
"If you think about this, it's an amazingly unusual thing for a body of scientists to do," said Weissman of the website. "Once you read those websites and see what they are doing to people, you begin to lose faith in human nature. They will take the last dollars and days of people's lives. But by asking a few simple questions, you'll learn whether they are trying to treat you — or your wallet."
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