Stem cell tourism: Definitely dangerous, but should it be condemned?
The (GNTIS) has just been asked for an opinion on a stem cell procedure being offered by a clinic in the Ukraine. The treatment being sought is for a rare eye disease called Autosomal Dominant Optic Atrophy. The person making the enquiry has tried countless doctors, specialists and done extensive reading. A literature search that I did found some research happening related to this disease, but nothing that has really translated into an effective treatment in the clinic.
The plea is one of a number we have had this year that would come under the banner of stem cell tourism. The Internet is full of clinics claiming unproven stem cell cures for countless conditions or diseases. All seem to be in countries you need an Atlas to find; all seem to charge more money that their host country’s national debt.
Recent published papers (Cell Stem Cell) confirm that many of these clinics over promise the benefits and neglect to reveal the risks. None back up their claims with credible preclinical studies or peer-reviewed evidence. This can and does put patients at serious risk. A case in point is the recent report in PLoS of a child who developed tumors in his brain and spinal cord after being treated with fetal stem cell transplants.
Unfortunately for person making the enquiry to the GNTIS, giving advice or opinion on these clinics is outside our expertise, so our response, apart from putting them in contact with those with the appropriate expertise (eg Australian Stem Cell Centre), is simply beware. But here is advice from a recent article in Science (26 June 2009, Vol 324,pp 1664-1665):
“Given the current state of our knowledge about stem cells and their actions, patients should continue to be counseled against medical travel for unproven stem cell–based therapies at this time. In the near future, however, there will be a need to articulate further the acceptable conditions under which “unproven” stem cell therapies for specific diseases may be attempted, as medical innovation, in patients outside of clinical trials.”
So they leave the door open a bit by pleading for a bit of tolerance for unsanctioned trials and treatments.
As it is likely that stem cell tourism will continue to flourish here is another recent document released last year by the International Society for Stem Cell Research. Their handbook on stem cell therapies contains the normal frequently asked questions about stem cells, but more importantly they have the questions people should ask before seeking any form of stem cell therapy. These questions include:
· What should I look for if I am considering a stem cell therapy?
· What should I be cautious about if I am considering a stem cell therapy?
· What else should I ask?
· Should I get a second opinion?
· How can I find out about clinical trials that use stem cells?
The handbook is an appendix to a more comprehensive document on this topic.
For Australians, the Australian Stem Cell Centre also has some good information about current stem cell treatments and clinical trials.
Jason Major
Gene and NanoTechnology Information Service