A stem cell researcher's dilemma, to tell or not to tell

Jackie Ward is a stem cell researcher at U.C. San Diego. She recently came across something that caused her to pause and think about her responsibilities as a scientist. It’s an issue that most scientists have to face at some point or other in their careers. This is her story

Among the multiple cat pictures that I receive weekly from my parents, my mother also recently forwarded me a link from our local small town newspaper. This article was about a fundraiser being held to financially support stem cell treatment for a young local resident who suffered from severe brain trauma. This is just one of several articles I’ve seen of this nature from my hometown in the past few years.

I am from a conservative Southern state and my hometown is far from any large research area. Growing up in my town of 15,000 people, I knew not a single scientist, much less anybody that studied stem cells. I wondered if this family had contacted anybody who was an expert in the stem cell field to discuss this treatment. Was it my responsibility to contact them?

I did a bit more research (that’s my nature as a PhD student after all) on the clinic this patient planned on attending. This clinic claims to isolate stem cells derived from body fat – also called adipose-derived – to treat many kinds of diseases. Though they do not directly claim to cure any diseases, there are links on the website that imply treatment of up to 30 different conditions, ranging from HIV to Parkinson’s disease to arthritis.

It is not stated anywhere how the stem cells are isolated, why they would be effective, or that long term analyses of the patients indicate any improvement in their condition. In short, they lack all the measures that would typically indicate that this procedure is a safe, effective, scientifically-based treatment.

I wouldn’t consider myself an expert on regenerative medicine, but I do have a scientist’s understanding of the field. As a PhD student, my work focuses mainly on using stem cells to model neurological diseases. However, thanks to many classes and general interest, I have learned a lot about regenerative medicine and what the current state of stem cell therapy is. A nice primer written by the The International Society for Stem Cell Research has a nice primer about this on its website; and the CBS-TV show “60 Minutes” also did a great segment on this. In summary, the only current proven use of stem cell replacement as therapy involves the use blood stem cells to treat disorders of the blood and immune system. This is not to say that stem cells won’t one day be used to treat a much larger range of diseases, it is simply that a new field requires more time to come to full fruition.

I asked myself “is it my responsibility as a stem cell scientist to disseminate these concepts to those in my community?” Normally I can answer this question quite easily. I believe I have an obligation to reach out to the community to translate complex scientific concepts and to offer my perspective on my field of expertise.

I had never before considered that doing so could be unwelcome or cause hardship but I wondered if by explaining my knowledge of regenerative medicine to this family, would I potentially be dashing their hopes of treatment for their son.

I wrestled with this question for some time and in the end I decided to write to the family representative of this patient. To me the benefits of doing so outweighed the detriments. It is still my responsibility as a scientist to communicate with the public in good situations or bad.

I explained my knowledge of the stem cell field and expressed concern at the risks—medical, financial, and emotional—associated with this kind of treatment. The brief reply from the family underlined their strong desire of instilling hope for the patient despite the risk that there would be no real medical benefit. There’s no argument that this is a valiant cause. Hope is a powerful force, and can have profound effects. However, I believe that hope can be instilled by other methods, and not expensive, scientifically unsound treatments.

My attempt at helping this family didn’t affect their decision or how they proceeded in any way. As a scientist, I believe the money raised for this cause could be better spent on effective treatments like intensive physical therapy or support groups or paying already incurred hospital bills. Yet, even though it did not have an impact on this family, that doesn’t mean I wouldn’t do it again. I feel that all scientists have an obligation to give back to society in whatever way they can. People may not always listen to us, but at least they will have had a chance to base their ultimate decision on sound science rather than just pure hope.

Jackie Ward

Jackie took part in our Elevator Pitch Challenge last year and described the kind of work she is doing and why it’s important.