There Is An 'Enormous' Conflict Of Interest In The Medical Publishing Industry That Is Stymieing Research In Rare Diseases

In last week's edition of the New Yorker, Seth Mnookin wrote about the case of Bertrand Might, a Salt Lake City boy with a condition so rare it wasn't even clear at first if anyone else on earth had ever demonstrated it. While Might displayed a host of recognizable symptoms, test upon test came up empty for anything that would accurately describe the combination of them that Might was displaying.

Eventually - and mostly through unceasing efforts by Bertrand's parents to get answers - doctors were able to crack the case.

One thing that held back a breakthrough, Mnookin writes, was a conflict of interest that lies at the heart of the medical publishing industry. For a team of researchers to claim it has "solved" a new disease - meaning that they've figured out what causes a set of previously symptoms - they need at least two cases to do it.

But tracking down a second case can often involve reaching out to another set of researchers. And that, in turn, means collaborating on a publication and therefore ceding exclusive credit on announcing the findings. Credit must be granted even if all the research team has done is comb through a DNA database licensed to another institution. Mnookin reports how this ends up stymieing research:

When I asked [Duke geneticist Vandana] Shashi if she could imagine a scenario that would result in one research team's publishing a paper with data from a different research group working on a similar project, she said, "Not that I can think of."

Isaac Kohane, a pediatric endocrinologist at Boston Children's Hospital, told me that many researchers believe, incorrectly, that patient-privacy laws prohibit sharing useful information.

"If you want to be charitable, you can say there's just a lack of awareness" about what kind of sharing is permissible, Kohane said. "If you want to be uncharitable, you can say that researchers use that concern about privacy as a shield by which they can actually hide their more selfish motivations."

Mnookin talks to two other researchers who put the situation and even harsher terms:

David Goldstein [a geneticist at Duke] added, "It's not an overstatement to say that there are inherent conflicts of interest at work." Daniel MacArthur, a genetics researcher at Massachusetts General Hospital, is even more blunt. "It's an enormous deal," he told me. "And it's a big criticism of all of us, but it's a criticism we all need to hear. The current academic publication system does patients an enormous disservice."

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