How researchers lock up their study data with sharing fees

Chris Ferguson, a psychology researcher at Stetson University in DeLand, Fla., wanted to study how prolonged exposure to violent media affects kids and young adults. Not having access to his own long-term data on the subject, he turned to Brigham Young University, in Utah, where another group had recently published a similar study on the subject.

The response: Sure, you can share our data — but you’ll have to pay for it. It would cost $450 for the 1.5 hours it would take the institution to prepare the file. Lacking the cash but not wanting to abandon his project, Ferguson did what many people seeking funding do nowadays: He opened a GoFundMe page. Within two weeks, thanks to donations ranging from $10 to $300, he’d exceeded his goal.

Unfortunately, that still hasn’t opened up the data to him. “The contract they sent me I think was super restrictive — read literally, I don’t think even if I had found they had miscalculated a variable that I could recalculate it or report the error without their permission,” he told STAT. He and the school are trying to reach a deal.

The story highlights a potentially uncomfortable aspect of data-sharing: Although science is unquestionably a public good, data often are proprietary. Drug companies, for example, spend millions upon millions of dollars on clinical trials for their experimental products. While the public certainly has a right to know the results of those trials — favorable or not — researchers who want access to the data to conduct their own studies can’t reasonably expect the original investigators not to recoup the costs of sharing it.

Indeed, a consortium of scientists has argued just that. Writing in the New England Journal of Medicine in August, the group endorsed a pay-to-play system for outside researchers who want access to other people’s data.

We took issue with that approach, but not because of the fee scheme. Rather, the consortium also called for a two-year period of exclusivity for the originators of the data — an unnecessary obstacle that will surely hold back progress just so that researchers can preserve their grip on their findings and continue to get credit for them. That’s an important point: Trying to recoup costs is fine in the abstract, but if it’s used as just another way to avoid sharing data, then it’s deeply objectionable.

We’ve seen this recently, with the PACE trial data of a study of chronic fatigue syndrome, where the original researchers’ university spent £250,000 to fight disclosure of the data following a freedom of information request. They were ultimately unsuccessful. That amount of money could have been used to share an awful lot of data.

One thing about the Ferguson-BYU example is clear: We need explicit policies. Winging it will work about as well in this arena as it does in, say, presidential debates. Existing rules about data sharing, if they even exist, are vague and institution-specific, and permit researchers to erect obstacles, financial or otherwise, that give them effective veto power over the use of their data.

“I don’t think there seems to be much to specifically stop the authors of original papers from putting these hurdles in place,” Ferguson said. “My guess is that this is really just becoming a thing, and in the absence of clarity, everyone kind of has different assumptions about what’s OK or ethical.”

One solution: Building the costs of sharing data into the grants for the original researchers. The fees will have to come from somewhere, so why not bake them into requests? But there are no doubt other ways to solve this problem. Give us yours — although we can’t pay you for them.