Challenging the Ice Bucket ‘Breakthrough’ — A Toxic Blend of Science and Marketing

Everyone, it seems, knows about the Ice Bucket Challenge, the viral phenomenon that raised record-breaking sums for the Amyotrophic Lateral Sclerosis (ALS) Association. This feel-good movement was critiqued by many, but no one can claim it was a bad thing: It raised lots of money, the overwhelming majority (96 percent) of which was used to support research or services or education related to this horrible disease. What’s wrong with that?

The problem arises when we indulge the false narrative that these sorts of short-term infusions of money lead to major scientific “breakthroughs.” This absurd argument — that the Ice Bucket Challenge has led to a “breakthrough” in ALS research — is now being made on the pages of the venerable Washington Post and was widely picked up by many other news outlets. The reporting was based on a study that first appeared in Science magazine, which explained issues relating to a dysfunctional protein in ASL patients, suggesting that this discovery could lead to new therapeutic strategies in treating the disease.

Here’s why I take issue with much of the reporting on this research.

1. This new finding is not a “breakthrough.” I say this because, intrigued by the hype, I went back to read the original paper on which this story was based. Okay, full disclosure: I really tried to read the paper, but it’s full of biological mechanisms and scientific jargon that I don’t fully understand, so I can’t say I read (or absorbed) it in its entirety. (Feel free to read the paper in Science yourself; perhaps you’ll do better than I did.) Still, I understood it sufficiently to conclude that this study is elegantly conducted and yields important scientific insights. However, it is —> Read More