Communicating About Unproven Stem Cell Treatments to the Public
In recent years, there has been a proliferation of unregulated stem cell clinics providing unproven treatments for patients with a variety of diseases, injuries, and congenital defects. With more than 700 stem cell clinics in operation within the United States alone, and many more worldwide, patients have increasing access to risky, untested options for serious illnesses. As scientists, it is important to effectively communicate the risks of these untested treatments to the public.
I recently attended a lecture at Harvard Medical School on “Human Trials: When the Science of Clinical Translation Collides with Stem Cell Tourism.” Professors George Daley (Harvard Medical School, USA) and Insoo Hyun, (Case Western Reserve University School of Medicine and Harvard Medical School, USA) spoke to physicians, scientists, and the general public about clinical trials using stem cells, from both clinical and philosophical perspectives. The lecturers attempted to dissect the when’s, where’s, how’s, who’s, and why’s of experimental medical practice, and the difficulties physician-scientists currently face in a time when stem cell therapies are both promising and uncertain.
It is important that patients understand that there are very few conditions for which stem cell-based therapies have been proven effective and are routinely implemented in medical practice. These are primarily limited to bone marrow stem cell transplantations to treat diseases of the blood and immune system.
Researchers are in the process of testing new stem cell therapies, but any new prospective treatments require clinical trials and a rigorous peer review process before they are accepted as safe and effective.
Emerging cell therapies complicate the traditional system for testing new treatments, however, because “Cells are a different type of medicine,” explained Dr. Daley. As a result, stem cells currently exist within a grey area of legality for medical regulatory councils within many countries.
This has allowed for-profit stem cell clinics to flourish around the world. These clinics, largely unregulated and unconstrained by ethical guidelines, are thriving, despite the fact that their practices have not been proven to be safe or effective, and in some cases, have caused harm. Individuals who receive unproven stem cell treatments at for-profit clinics are taking on enormous medical and financial risks.
Dr. Hyun explained that these risks do not appear to be strong deterrents as “Families under spiritual distress will often seek out dangerous and unproven therapies.”
I saw firsthand how the general public seemed unconvinced of the risks and limitations of stem cells, which have been sold to them as miracle cures. Questions raised during the discussion portion by patients and their family members demonstrated that many still considered stem cells to be an infallible, one-size-cures-all medical innovation. From autism to tropical infections, the public appeared to believe that stem cells have unlimited curative properties, despite the risks and complications reported by Drs. Daley and Hyun. Warnings seemed to go largely unheeded. Instead, many hands rose looking for personal referrals.
The communication gap between physicians, scientists, and the general public regarding stem cells and their plausible applications was illustrated to me in that auditorium. I hope future platforms, like this one, are used as an opportunity to share factual evidence with the general public, from the fundamentals of cell biology, to the steps patients and families need to take to avoid becoming victims of a predatory scam.
We do not yet know the full therapeutic spectrum of stem cells, nor their caveats, but it is our responsibility as members of the scientific community to uphold integrity and transparency, and not allow misinformation and anecdotal evidence to out-voice us.
Patients are encouraged to read the Nine Things to Know about Stem Cell Treatments to learn about the potential and limitations of stem cells, and to detect commonly circulated misinformation.
International guidelines were spearheaded by Drs. Daley and Hyun to ensure that stem cell research and clinical trials proceed with scientific and ethical integrity.
Blog by guest contributor Ashlee Conway, PhD, Postdoctoral fellow in the lab of George Daley at Harvard Medical School’s Stem Cell Institute & Department of Hematology/Oncology, Boston Children’s Hospital, USA