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. 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.

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8 thoughts on “A stem cell researcher’s dilemma, to tell or not to tell

  1. Dear Jackie,
    I think your action was positive and I admire you for it. These kinds of decisions are not so easy to make, but saying something can make a difference. Stem cell scientists around the world are increasingly facing such tough decisions as more and more dubious clinics out there are trying to make money by preying on vulnerable patients and manipulating hope into a business model. I also try as an advocate as well as a stem cell scientist to make a positive difference, in part through my blog.
    Paul

  2. I don't believe it is your responsibility to be the stem cell police. I think you crossed the line and if I were the family, I would have not been appreciative. Would you interfere with other medical decisions being made by people? What about the first heart transplant patient? Would you have contacted him? I think medical decisions are best left to those directly involved. I hope you will stick to your research and stay out of decisions that are highly personal and medical. Researchers must stop believing they can dispense medical advice or recommendations unless they are also licensed physicians. I am also sure the family did not welcome your advice on how to better spend the money they were raising. Frankly, you were way out of line even though your intentions might have been good. You need to stick to your research.

  3. Wow. That was rude. It looks like you are interested in those money… I believe she did a right thing, advocating based on her knowledge as a specialist in stem cells. Moreover, she is a passionate advocate. That matters even more!

  4. Since when do Researchers give medical advice, or interfere between a doctor/patient relationship? This is pure arrogance. I am still waiting for published works from researchers that prove that autologous stem cell treatments Properly done are harmful or dangerous. I've posed this question for fours years already, and I am still waiting. Its nonsense to think that now researchers want to police the actions of medical doctors. A researcher has FDA protocols that are mostly geared towards massively produced chemical drugs that can reach 100s of thousands of patients in a short period of time, so justifiably, the drug or in this case autologous stem cells have to be deemed potentially harmful first, and then proven safe. Their “guilty first until proven innocent” approach is not the same for medical procedures.

  5. If more people spoke our about what is not right within the medical profession and medical research members of our society would no longer be used as guinea pigs at the nod of a person in a white coat. In Victoria Australia we are demanding medical profession and researchers of past be brought to accountability and justice and if some one had of spoken out in the past there would not be tens of thousands of survivors of medical research without consent on innocent minors. WELL DONE I ADMIRE YOU FOR YOUR COURAGE AND STRENTH TO RAISE YOUR VOICE.

  6. I think this person has emotional ties to this situation and this is exactly what companies that promise stem cell therapies rely on to conduct their business: vulnerable, desperate, emotionally fraught patients and their families.

    I doubt very seriously that there are any reputable doctors out there who would advocate stem cell therapy given the extreme dearth of quality evidence that it works. And if there are, I think Jackie did the right thing by sharing her expert opinion with the family's representative. It is ALWAYS a scientist's responsibility to disseminate honest, scientifically-sound information, and the family should be grateful it came from someone they can trust-someone from within their own community.

    She certainly didn't push her opinion, she simply informed the representative of the reality behind stem cell therapy and left it up to the family which choice they would make: find hope in more valid therapies, or throw away their money on unfounded medical 'treatment'.

  7. According to Ms. Ward, she did not give medical advice to the family, rather stated that there is no evidence that stem cell therapy works. If you are waiting for evidence that stem cell treatments are harmful or dangerous, consider the monetary and emotional side of things, rather than any detrimental medical results (which I agree, have not yet come-to-light). I will never forget this episode on 60 Minutes (http://www.cbsnews.com/news/stem-cell-fraud-a-60-minutes-investigation-26-08-2012/) which highlights how these hopeful patients spend immense amounts of money only to have their hopes devastated after their procedures. In my opinion, it is worse to go through the financial burden and end up in the same 'hopeless' place as if you'd been told that stem cell therapy won't work. Kudos to Ms. Ward.

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