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July 29, 2016

Opinion: ‘Ice Bucket’-Backed ALS Advance No ‘Breakthrough’

Laudatory media accounts this week of new research on amyotrophic lateral sclerosis that was partially funded by “ice bucket challenge” donations overstated the importance the work to promote a feel-good narrative about the 2014 fundraising sensation, according to HealthNewsReview.org, a nonprofit website that assess reporting on medical news.

Citing two medical experts it consulted, the site characterized the study linking the gene NEK1 to 3 percent of ALS patients as “intriguing and important” basic research but a far cry from the “breakthrough” touted in headlines in some major media outlets. Gene-sequencing collaborative Project MinE, which did the work, received $1 million from the ALS Association, the main beneficiary of ice-bucket giving, which publicized the findings in a news release.

Vinay Prasad, an assistant professor of medicine at Oregon Health & Sciences University, told HealthNewsReview that the NEK1 had already been linked by researchers to ALS and was still relatively rare in sufferers, raising questions about whether the findings would produce therapies with any impact for patients.

The website said much coverage of the study focused on the “innovative PR aspect” of the ice-bucket challenge and “reveling in its apparent vindication” against critics who derided it as more stunt than philanthropy. Such “cheerleading,” the site said, could “have a long-term detrimental impact on the way that research is funded in the United States.”