By Alan Regenberg


A widely carried AP story entitled, “Italian doctors prepare urgent stem cell treatment for 2-year-old whose cure was blocked”, provides a great example of a recurring problem in media coverage of stem cell science.


In the headline and the first paragraph, the stem cells are first described as a treatment and then as a cure for spinal muscular atrophy, a disease with a life expectancy of about two years.


This description of the stem cell-based medical intervention is only slightly tempered in the second paragraph, where it is at least described as an ‘experimental treatment,’ and it is revealed that the stem cell intervention provider was shut down for shoddy practices.


The evidence to support these claims: “Her family reported marked improvement.”


While there is plenty of room for optimism about the therapeutic potential of stem cells, describing untested and potentially harmful stem cell-based interventions as “treatments” and “cures” is a significant problem, and something that the media, in particular, needs to resist in reporting on developments.


Anecdotal evidence from a single case may be sufficient to justify continuing the delivery of this intervention to a terminally-ill girl, but it is not sufficient to claim that the intervention actually works.


It is not surprising that people want expeditiously-tested medical treatments that are safe and work as advertised. These goals are sometimes at odds – careful testing can take time. Not all patients have time. The tensions here are real and apparent.


It is counter-productive when members of the media avoid these real and significant challenges by glossing over distinctions between what people desperately hope for and claims that can be supported with at least some reasonable amount of evidence.


At present there are very few stem cell treatments and even fewer stem cell cures. In this particular case, the family of a young girl with a terrible condition will be gambling that an untested stem cell-based intervention can do more good than harm. I wish them all the best.


Alan Regenberg, MBe, is the Bioethics Research Manager at the Johns Hopkins Berman Institute of Bioethics. He is currently developing strategies to use social media as a tool for broad public engagement around issues in bioethics. You can follow him  @bermaninstitute or, using his inside voice @aregenberg.

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Alan Regenberg

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