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 recognisable 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 have 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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