The Ice Bucket Challenge — those videos of friends, family members, and celebrities dumping ice water on themselves to promote awareness and funding of amyotrophic lateral sclerosis (ALS) research — was a veritable media sensation in 2014.
Now comes the heartwarming follow-up: According to an ALS Association news release, those donation-inducing videos helped fund a discovery that many news outlets are calling a “breakthrough”
By all accounts, this is important basic research that may one day form the underpinnings of an effective therapy. But then again it might not — and if past experience is any guide it probably won’t. And so we must step back for a moment and examine how this research is being framed and how that framing affects public perceptions and, ultimately, policy towards research funding.
It took us mere moments to find two experts who — after taking a closer look at the actual study results — emphatically denounced the use of “breakthrough” to describe the findings and suggested that readers were likely to be misled.
Vinay Prasad, MD, MPH, Assistant Professor of Medicine at the Oregon Health and Sciences University told us:
This is no breakthrough, and another sad and embarrassing example of academics and the media trumpeting very preliminary basic science work far beyond what they ought to. From the paper, the authors state “NEK1 has been previously described as a candidate gene for ALS. Here our findings show that NEK1 in fact constitutes a major ALS-associated gene with risk variants present in ~3% of European and European-American ALS cases.”
In other words, the authors do not identify a NEW gene of interest– it was ALREADY implicated– and even their work suggests it is a rare occurrence ~3% in ALS cases. Moreover, the gap between this finding and improving outcomes for patients remains as far as going from the earth to pluto. Many many many genes have been implicated like this in many many many diseases, and we still have not seen any novel therapies making any measurable impact even after many many years.
Similarly, Susan Molchan, MD emphasized that such findings still leave us a very long way from any potential therapy for ALS patients.
Many genes are known to be associated with many diseases, many much more strongly than in a few percent of cases as here, for example early-onset Alzheimer’s and Duchenne’s muscular dystrophy. ‘Association’ does not mean they are a cause, that is one leap, and even if the gene did cause the disease, developing a drug, as has been attempted for Alzheimer’s and Duchenne’s for decades, is another. I thought the quote at the end of the Guardian article gave it some perspective in saying we need to know much more. But in general, say NO to the word “breakthrough.”
Looking at the reactions to the “breakthrough” framing from everyday people on Twitter, we also see a vast disconnect between their perceptions and what the research actually means for patients. These tweets are a stark example:
“Happy this worked, just wish it had back in 1998 when my Dad died from ALS”
“Now there’s a cure for it”
“I will admit, I was a skeptic. Glad to see the #icebucketchallenge really worked.”
“Gosh, I hope this is true!”
What is true? That a gene has been discovered that might lead to a treatment – but probably won’t – for a variation that might be present in maybe 3% of all cases of ALS?
So much of the coverage seems to be praising the innovative PR aspect of the Challenge and reveling in its apparent vindication against naysayers. Why aren’t more reporters digging into what the findings actually mean … and what they might not mean?
Not only does this shallow, cheerleading style of reporting mislead readers as to what the research actually found, but it could also have a long-term detrimental impact on the way that research is funded in the United States.
Prasad says that headlines claiming the Challenge “worked” do a “grave disservice” by “contributing to false ideas about science and funding by the public.”
Given the widespread interest in the ice-bucket challenge, we all want, we hope, we wish those funds to lead to some improvement in outcomes for patients with this conduction. But we have to avoid misleading the public that science funding leads to breakthroughs on this time frame, and for these miniscule funds. The challenge raised 125 million for the ALS organization, which is a drop in the bucket of science funding.
We have to be careful not to equate philanthropy with adequate research funding. The current state of US federal funding for science is in crisis, and dumping ice over our heads, and donating to the charity or disease du jour is not a substitute for a robust science and clinical research agenda. It may give a boost to one disease in one year, but we have lots of diseases to work against, and science takes many years.
So here’s a re-cap:
This is intriguing and important research.
News coverage didn’t do anyone a service by trumpeting the social media and ice bucket challenge PR “successes” while failing to offer context on what the finding means – and what it may not mean, or, what we know but what we still don’t know about ALS.
The words used in news stories matter. We have shown how “breakthrough” led some on social media to spread news of a cure – and that is wrong. We’ve pointed to other instances where even the FDA’s use of the term breakthrough leads to public confusion
We all can do a better job of communicating progress in research – and evaluating claims of progress in research – without raising false hopes and making statements that cannot be supported by evidence at this time.