March 31, 2014 | Posted By Zubin Master, PhD

I have written on this blog about the topic of stem cell tourism and the different strategies that have been proposed to stop the phenomenon. Just to provide a background on the topic from a previous blog: stem cell tourism is used to describe an internet-based direct-to-consumer advertised industry where clinics offer untested and unproven stem cell interventions as bonafide therapies to patients with a range of diseases and injuries including Parkinson’s disease, multiple sclerosis, ALS, blindness, cancer, cerebral palsy, spinal cord injury and many others. Basically there is no scientific evidence of safety of efficacy of these modalities to offer them on a for-profit basis to patients. The term was originally coined as a form of tourism because patients traveled from countries like the U.S., U.K., Canada and Australia to clinics in countries with lax regulations, but this simply is not the case anymore. There are several clinics within highly regulated countries like U.S. that offer stem cell interventions.

Of the several strategies people have discussed, one of the first has been on the topic of providing education to patients and the public. Here, people argue that providing education on the dangers of stem cell tourism might actually sway patients to not undertake unproven stem cell interventions. As some scholars have mentioned, education might not be as effective because it depends on a “rationale actor model” where we assume that patients will behave rationally and make choices based on weighing the harms and benefits of seeking unproven treatments. More so, such an argument does not sufficiently consider the hope patients have to ameliorate their disease, reduce pain or other symptoms, and increase their quality of life. While these counterarguments are certain rational and likely to be true, there is yet no solid evidence showing whether education on stem cell tourism is effective at swaying people from traveling for unproven interventions. But even if before we go into whether education might influence a patient’s decision to travel for unproven stem cell treatments, I think we need to assess the role of patient education in medicine.

The goal of providing patient education is not to convince or influence patients. It is to provide them first and foremost with unbiased information so that they are better informed and can thus make informed healthcare choices. In this sense, giving patients information about stem cell research, the clinical translation process, and about the risks of considering unproven stem cell interventions is valuable in and of itself, irrespective of whether it actually serves as a mechanism to stop this flourishing industry.

But let’s think a little bit about how education might be influential. Most patient education books on stem cell tourism tend to ask questions from a patient’s perspective. The patient booklet I developed along with Professor Timothy Caulfield at the University of Alberta’s Health Law Institute asks important questions patients would want to know. For example, “what types of stem cells are used and what diseases are treated by stem cell clinics that provide unproven interventions?” Another important question is “how do you spot a clinic providing unproven stem cell interventions and what questions should we ask them?” Lastly, our booklet also addresses important questions including why does it take so long to make a stem cell therapy; are stem cells taken from your body safe; and whether scientists, doctors and regulators have a vested interest in maintaining the status quo. All of these questions are purposely designed based on contemporary issues patients are discussing today. Providing patients this information is likely to impact their decision, and even if they do go seek unproven stem cell interventions, they are at least better informed. Many of these clinics ask for repeated treatments, and so perhaps educating patients may make them think twice if they don’t see any benefit from the first round. Another imaginable scenario is that some patients who might want to enroll in a clinical trial can now differentiate between unproven interventions and legitimate clinical research. Measuring whether information sways people and in what direction, for how long, and in what way are not easy questions to address in a research study. Certainly research seeing how and in what ways patient education does impact patients’ choices is important, but whether it actually serves to deter them from traveling is a separate question and should not influence us to develop good patient-centered educational information on stem cell research and tourism.

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.

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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.