Stem cell organization to scientists: Enough with the hype!
Giving a misleading impression of the state of research is not a good thing.

As we discussed on Tuesday, a lot of the problems with the public’s view of current research originatelong before journalists get involved. Scientists and the institutions that support the research oftenportray preliminary work as more definitive than it is, or push the findings as supporting ideas that are,at best, premature. So it’s nice to see that one organization of scientists is pushing back against that.
The organization is the International Society for Stem CellResearch (ISSCR), which has just released an updated setof guidelines for stem cell researchers. The majority of thetext is devoted to research ethics and best practices, and itcovers topics like patient data. But the new version includesa section devoted to communications, and it nicelysummarizes some of the problems that the field has facedsince its inception:
Popular coverage and reporting in the medicalliterature are frequently far from ideal. Potentialbenefits are sometimes exaggerated and thechallenges to clinical application and risks are oftenunderstated. Inaccurate or incomplete representationsof this sort can have tangible impacts on theexpectations of the general public, patientcommunities, physicians, and on the setting of healthand science policies. Inaccurate or incompleterepresentations can also be exploited by companiesand individuals marketing stem cells for unprovenclinical uses.
How to combat this? The ISSCR lays the responsibility on the shoulders of researchers and the pressofficers who work with them, advising them in a variety of ways to cut out the hype. “Communicationsabout ongoing studies should explain that clinical efficacy is not established,” the guidelines state, “andthat the results may reveal the intervention to be ineffective or, in some cases, harmful.” Clinical trialsthat focus on establishing safety should not be referred to as treatments. And researchers shouldn’t bein the business of predicting the future of uncertain processes like the movement of a treatment throughclinical trials—any forward-looking statements “must be accurate, circumspect and restrained.”
The guidelines warn against what’s become a common practice in clinical studies: when the focus ofthe work produces a negative result, the researchers go searching for any measure that turns uppositive and shift the focus to that. Researchers are advised to always report the intended measures,even if they fail.
Finally, researchers are advised that their work doesn’t end when the press coverage starts. If anypublic representations of research are inaccurate or misleading—be it a press release or ensuingcoverage—it’s the researchers’ job to get them corrected.
Will this cause all stem cell researchers to immediately take their responsibilities as public communicators seriously? Certainly not. But having clear and strong standards—which these certainly appear to be—provides a strong lever to begin to shift behavior. It’s much easier to convince some one that they’re being irresponsible when an organization of their peers has already clearly described why those actions are irresponsible.