Posted on July 6, 2010 at 12:12 PM
The International Society for Stem Cell Research (ISSCR) has created a website that aims purportedly to help patients assess the claims made by stem cell companies and researchers offering cures via stem cell research.
On their dedicated website, www.closerlookatstemcells.org, ISSCR warns “patients” of potentially costly, unproven, and harmful “treatments” that some have described as the “21st century version of snake oil“.
But the true hucksterism here is in fact the ISSCR website itself which promotes precisely so many of the purported harms that it allegedly is trying to prevent. Let’s just start with the language on the front page. “A Closer Look at Stem Cell Treatment.” Treatment. Perhaps I missed a step in the advances of stem cell research. Did we quickly jump over the experimental phase and already move into having effective stem cell therapies? Someone must have hit the fast-forward button while I was blinking.
Just on the landing page of closerlookatstemcells.org alone are the words “clinic”, “patient”, and “treatment” all of which suggest that stem cell research is much closer to medical care than what it is which is in fact experimental human subjects research.
But it gets worse. The “What to Ask” page begins with a section entitled “The Treatment”, but it doesn’t take more than about 1/3rd of the page for the language to slip back into “clinical trial”, “the study”, “federal oversight”, “IRB”, and other mainstays of actual human subjects research. Too bad you have to read down below the fold and understand the difference between that language to really comprehend what it means to be a consumer of “stem cell treatments” from “clinics”, as ISSCR describes them.
So not only does this site actually induce the therapeutic misconception, I would argue that it also induces consumer confusion of the highest order. If I were even a relatively educated patient reading this site, I would have to wonder, “Are they talking about medical treatment? Or this research? Am I a patient? Am I a research subject?” According to this website, one could be either. And maybe that could be true. 5 years from now. But not today.
The true icing on the cake is ISSCR’s goal for the website on their FAQ page. The purpose of closerlookatstemcells.org is “provide patients, their families and doctors with as much information as possible so that they can make an informed decision about stem cell-based treatments. The ISSCR respects patients’ rights to utilize this information in the manner they see appropriate and to make their own choices.”
What information is ISSCR providing, you might ask? A list of stem cell research organizations that meet two criteria: 1) involvement of a “medical ethics committee” to “protect the rights of the patient” and 2) documentation of the involvement of a federal regulatory agency. Wow. Now that is a high bar. And based on these standards and being listed on this website, is this not an implicit endorsement of the organization in the eyes of an inquiring patient? It would be hard to argue otherwise, even though they do.
I am usually reluctant to argue against patient education and empowerment, but this website does precisely the opposite. It only muddies the waters and will confuse patients desperate for cures who are turning to stem cell trials as a last resort and want very much to believe that the research laboratories that they are walking into are “clinics” and the trials they are enrolling in are “therapeutic.” Unfortunately, that is not yet the case. And ISSCR should just come out and say so.
Summer Johnson, PhD