Guest Blogger Jan Barfoot, EuroStemCell
The melting pot of expectations, hope, responsibility, idealism and realism in the field of stem cell research were the subject of a panel discussion for media representatives at the recent annual meeting of the International Society of Stem Cell Research in Stockholm, titled “Stem Cell Research: Promise, Progress and Hype. The following article has been crafted from the comments of those speaking at this discussion: Timothy Caulfield, LL.M., Health Law Science Policy Group, University of Alberta, Ira Herrmann, Stem Cell Network NRW, Düsseldorf, Dan Kaufman, M.D., Ph.D., University of Minnesota, Megan Munsie, Ph.D., Stem Cells Australia and, Jeremy Sugarman, M.D., M.P.H., M.A., John Hopkins Berman Institute of Bioethics.
The public are surrounded by over-inflated representations of stem cell research and its readiness for therapeutic use. We are told of leading sports figures benefiting from stem cell treatments, popular TV shows present stem cell treatments as available and effective, newspaper headlines announce stem cell cures and stem cells are used to market face creams, weight loss products and anti-aging cosmetic treatments. These representations can be augmented by press office departments of research institutes, when results are widely publicized before the full scope of these results are understood.
With this backdrop of ‘stem cell treatments as here and ready use,’ people, when faced with an incurable condition with no therapeutic solutions, turn to stem cell research - which appears to be offering all the solutions. A simple Google search of “stem cell treatment” provides the seeker with confirmation that indeed, a stem cell therapy is available to them, it is ready to use and is a routine procedure. This was how the scene was set at this event, by lawyer and ethicist, Tim Caulfield. The problem, as he described it: so much that is promised by these clinics in many cases is not based in reality. Rather, it resides in the realm of future inflated expectations, or perhaps imaginings, and plays on people’s hope.
But, is this hope harmless? Even if there is scant scientific evidence for a procedure, does it matter if it gives someone hope and raison d’etre? In some cases no, it might indeed be harmless, if costly in terms of time, money and energy resources. However there are potential damages, in some cases physical harm, in others the financial damages of those who pays for follow up care. More subvertive still, is the erosion of public trust and the impact on the legitimacy of the entire field of stem cell research.
Whilst it is exciting what stem cell science might offer in the future, Caulfield encouraged all of us to curtail our grand promises. His recent article in Science Translational Medicine showed that 70% of the time media representations of stem cell science imply a treatment will be available in 5-10 years. The message to journalists present at this discussion - exercise prudence when representing stem cell science, clinics lever these representations to market their products.
After Caulfield defined the scope of the problem and some of the drivers of this issue, Ira Hermann brought an interesting case study about a stem cell clinic in Germany, X-Cell Centre. The centre has recently been closed down, following the death and injury of children due to a surgical procedure used by the clinic. You can read more about in this article by Casimir MacGregor on EuroStemCell. She highlighted that the company worked within the regulatory systems of Germany and Europe, were well organized and situated in rented accommodation within a hospital. How were people to know the treatment was problematic, if it was functioning within regulations? Hermann pointed out, one particular red flag to look out for is multiple conditions being treated with exactly the same stem cell product.
The next speaker, Megan Munsie, commented that Australia also has regulatory loopholes which allow stem cell clinics to function. She posed the question: What can the scientific community do? And proposed an answer: maintain and manage hope whilst keeping the hype in check. She described one solution that has been provided by ISSCR, their recently launched website - A Closer Look at Stem Cells. It describes how the scientific community takes responsible steps from basic research to clinical trials. Other pages show how stem cells could be used in therapy but also how they are being used in research and for developing new drugs. One particularly vital page on the website is ‘Nine Things to Know About Stem Cell Treatments,’ specifically for people considering paying for a stem cell treatment. “Clinics imply they have a silver bullet – but complex conditions need a complex solution” was Munsie’s notable conclusion.
A final perspective was bought by Dan Kaufman, a scientist/clinician with expertise in blood stem cells. He explained that bone marrow transplants are the only routine stem cell-based therapy worldwide. It has been employed since the 1960s and is used for a number of blood disorders and diseases, including blood cancers. He also commented about umbilical cord blood banking and use, referring to his recent review on the subject. He explained that whilst cord blood can be used for similar purposes as bone marrow transplants, it is his opinion that donation to public cord banks for communal use is preferable to storing cord blood in private banks for personal use only. His reasoning is such; the odds that the child will use their cord blood are very small and if they did they would need at least two units of cord blood. That second unit would need to come from a public cord blood bank. So if everyone donated their cord blood to a public cord blood bank, there is a much greater chance of cord blood being a useful therapeutic product.
Kaufman finished by also commenting on the implications of people affected by incurable conditions paying for treatments from stem cell clinics, that he acknowledged for the most part want to help patients. What about the rights of patients to choose to do this? His opinion, if people are fully informed about the procedure, the risks of it and the science is accurately reflected, then their choice should be respected. But if the science is not accurately reflected then there is an issue.
He finished by emphasizing that no one wants to stifle cutting edge and vital research but that new treatments should be tested as part of a clinical trial not within the walls of a for-profit clinic. This way proper follow up care is provided and the clinical results are made available to the wider scientific community. Then all can learn from, and build on, the research.
Under these conditions we will really know what evidence we have for the future promise of stem cell-based treatments for incurable conditions. Which is, after all, what we all look toward.