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October 17, 2012 | Posted By Zubin Master, PhD

Stem cell tourism is a pejorative term used to describe clinics that offer under or untested stem cell interventions to patients with debilitating diseases. This includes Parkinson’s disease, multiple sclerosis, ALS, blindness, cancer, cerebral palsy, spinal cord injury and many others. We used to think about stem cell tourism as potential patients traveling to clinics from countries like the US, UK, Canada and Australia to countries with lax regulations, but this simply is not the case anymore. There are several clinics within the US that offer under or untested stem cell interventions, some of which are being challenged by the FDA. The stem cell tourism market is an internet-based, direct-to-consumer market. There is a lack of scientific evidence and clinical research supporting the claims made by clinics in regards to the efficacy of these so-called “treatments”. The evidence sold to patients are testimonials by other patients saying how great they feel and how it has helped them and given hope. This is further fueled as some public perception studies indicate that several patients are frustrated and seem to distrust their domestic healthcare, research and regulatory system. So why offer these therapies? Well for starters, stem cell providers could make a ton of money (ranging from $5,000 to $30,000), especially because sometimes patients require repeated treatments. The market has more recently attracted celebrity types including several high profile athletes, Hollywood stars, and even a US State Governor.

I believe this profit motive, and the fact that these providers are offering interventions to which they should know it will not benefit their patients, is why many (I would say most) bioethics scholars have claimed stem cell providers as frauds, hucksters, charlatans, imposters, and snake oil peddlers. I too admit that I have made such claims in the literature. But upon further reflection and although I agree with many of my colleagues that many, may be most, providers are behaving in a fraudulent manner where they intentionally attempt to deceive patients, I am uncertain whether all of them frauds. Some providers I feel may be deceiving themselves. Self-deception is when individuals convince themselves of a fact or truth and they seem to be unknowledgeable about the deception itself. Their process to rationalize and consider important factual evidence and opposing arguments is being denied. This is even harder to believe when you think about these people as professional physicians and scientists. But the concept of self-deception is not new to science. Self-deception in science does happen. Scientists will believe in their pet theories and hypotheses so deeply, that they will ignore contradicting results that challenge them. 

My own conception of this argument that some stem cell providers are deluding themselves comes from conversation with a colleague where he met a physician that provided such therapies to patients. The physician honestly believed that his/her patients were getting better. My colleague was also convinced that the provider was genuine and not acting or disguising the truth. Can this happen? Can trained physicians actually ignore the science and provide some intervention using stem cells and believe their patients’ testimonies as evidence of improvement? I would reply a simple “yes,” they can. It isn’t so hard to believe that when patients tell their physician they are feeling better that the doctors believe it. This delusion may become reinforced by other colleagues and a community of likeminded physicians who all believe that stem cell transplants are helping patients. Especially when patients return to their home countries and aren’t followed-up, it is unknown whether any adverse event occurred due to the intervention. Even if a patient with a chronically degenerative condition continues to decline despite the intervention, it is not surprising that providers will attribute the decline to the disease and claim that perhaps the stem cell intervention brought them some improvement. Moreover, the placebo is extremely powerful. Several placebo studies show that patients can temporarily improve by lessening symptoms. Even with some alternative practices it is unclear how much the power of the mind plays a role in patient improvement, especially when the measures are indirect and less than clear to evaluate.

So why is this important? Well it is ethically important to prove when someone is intentionally trying to deceive and behave immorally as opposed to when someone is making an honest error. This distinction is used in ethics and law, and is embedded in our policies. For example, the US definition of research misconduct includes fabrication, falsification and plagiarism but does not include such acts when they are made in “honest error or from differences in opinion”. If stem cell providers offer patients treatment because they deceive themselves, then we may hold them accountable but to a lesser degree. In this sense, it is important to know whether self-deception by stem cell providers is occurring, especially if we want to prove culpability and hold those accountable for unethical practices. Don’t get me wrong, it’s still a form of medical malpractice and appropriate reprimands are needed, but the reprimands may differ if it can be proven whether someone is intentionally misbehaving or not.

So although our inclination is to call all stem cell providers frauds, we need to perhaps reflect further and perform further research so we may build appropriate standards for accountability.

The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our website.

5 comments | Topics: Stem Cell Tourism, Fraud, Self-Deception, Ethics and Morality, Stem Cell Research

Comments

Zhanna Kulshanova

Zhanna Kulshanova wrote on 10/18/12 2:07 PM

It is unfortunate that some professional physicians would offer this kind of “treatment” which is unproven, untested and probably potentially deadly. The doctors who offer these unproven and costly therapies must be held accountable for taking advantage of the desperation of seriously ill people. I can understand the self-deception of a gravely ill person but not of the professional health provider. As Dr. Carl Sagan said about Kepler, the famous German scientist: “When Kepler found his long-cherished belief did not agree with the most precise observation, he accepted the uncomfortable fact. He preferred the hard truth to his dearest illusions; that is the heart of science.”
Anonymous

Anonymous wrote on 10/18/12 2:55 PM

Totally think that even those that are self-deceptive are at fault.
David B. Resnik

David B. Resnik wrote on 10/18/12 8:13 PM

Self-deception is an angle worth exploring. Independent review (of the science and clinical care) is how we can minimize this. That’s why it’s crucial that a stem cell therapist work with an oversight body, such as an IRB or clinical committee. Also, the line between self-deception and fraud may not always be clear. Someone could start deceiving themselves which leads them to commit fraud or vice versa. You might start believing your own lies.
Doug Sipp

Doug Sipp wrote on 10/18/12 9:02 PM

It has historically been difficult to make a case for "fraud" in the legal sense, as it involved showing proof of intent to deceive, but some courts have now begun to broaden the meaning to "reckless disregard for the truth" - essentially asking whether the person in question "knew or should have known" that what he/she was doing or saying was untrue. It seems fair to hold people representing themselves as medical professionals to a similarly high standard.

It is of course very likely that there are educated, well-meaning people, perhaps large numbers of them, who "believe" that stem cells are safe and effective for use in the treatment of some set of medical conditions for which they are not currently standard of care. However, if they wish for others to accept those views, they must provide reproducible scientific evidence to support them. I'll be the second commenter here to quote Carl Sagan, who rightly said, "Extraordinary claims require extraordinary evidence."

There is certainly scope within medical practice to do limited series of experimental or "innovative" procedures, but the decision to commercialize procedures on the basis of weak evidence from such uncontrolled and underpowered experiments is unjustifiable. Not only is this a disservice to patients, but to the efforts to promote science-based medicine as well. Regardless of whether practitioners of this kind of premature and sensationalized direct-to-consumer medical advertising are intentionally deceitful, or are honest only insofar as they have thoroughly deceived themselves first, the criticism they attract is well deserved.
Elise Smith

Elise Smith wrote on 10/21/12 3:03 PM

The notion of self-deception is intriguing and worth considering in examining the intentionality underlying stem cell (SC) therapies. It would be interesting to empirically assess the extent to which self-deception is a factor, and its impacts on medical practitioners in the SC tourism market. And indeed, if it is significant, to better understand how and why. For example, critical acumen, scientific rigour and openness, and professional objectivity are affected. The positivist notion of the researcher or professional as an « objective » individual has been refuted time and time again. This kind of research would contribute to the education and development of a medical staff, by encouraging a continuous reflection and the testing of existing presumptions especially in a field like SC tourism. While such a study would likely be complex, it would give important insight into a booming medical business.

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BIOETHICS TODAY is the blog of the Alden March Bioethics Institute, presenting topical and timely commentary on issues, trends, and breaking news in the broad arena of bioethics. BIOETHICS TODAY presents interviews, opinion pieces, and ongoing articles on health care policy, end-of-life decision making, emerging issues in genetics and genomics, procreative liberty and reproductive health, ethics in clinical trials, medicine and the media, distributive justice and health care delivery in developing nations, and the intersection of environmental conservation and bioethics.
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