NEJM Editor Flip Flops On Data Sharing After Social Media Firestorm

After a firestorm of criticism on social media over his editorial comments,  Jeffrey Drazen, the editor-in-chief of the New England Journal of Medicine, is trying to quiet a growing controversy by modifying his position regarding shared data.

The firestorm was ignited by an editorial on data sharing in last week’s NEJM. Although highly supportive of one study that utilized data sharing, the editorial contained two paragraphs that provoked many readers. “Many of us who have actually conducted clinical research, managed clinical studies and data collection and analysis, and curated data sets have concerns about the details [of data sharing],” Drazen and co-author, Deputy NEJM editor Dan Longo, wrote.

Their “first concern” was “that someone not involved in the generation and collection of the data may not understand the choices made in defining the parameters.”

But it was their second concern that set off the most heated response and even provoked ridicule:

A second concern held by some is that a new class of research person will emerge — people who had nothing to do with the design and execution of the study but use another group’s data for their own ends, possibly stealing from the research productivity planned by the data gatherers, or even use the data to try to disprove what the original investigators had posited. There is concern among some front-line researchers that the system will be taken over by what some researchers have characterized as “research parasites.”

If you only rely on traditional media you’d never know anything had happened. But on Twitter, blogs, and comment sections the response was brutal. One person created a Twitter account, Research Parasite. Another Twitter user created a cartoon character, Sucky, The Research Parasite:

Screen Shot 2016-01-25 at 12.36.31 PMA host of well known and highly respected scientists and physicians  tweeted their strong objections. Here are just a few:

Barry Marshall:(Nobel laureate):  “Plenty of Nobel prizes came from a new look at other people’s data.”

Sekar Kathiresan (Cardiovascular genomics researcher): “Shocking to see disparaging term ‘research parasite’ to describe use of data often created w/ public funds

Michael Eisen (HHMI Investigator at Berkeley): no need for @NEJM to coin new term for people who use other people’s data – we already have one: SCIENTIST

Harlan Krumholz (Yale Open Data Access Project): We can’t put scientists’ interests above society’s. We must give credit to progenitors of data.

By Monday morning Drazen was ready to raise the white flag. In what is almost certainly one of the fastest published responses in NEJM history– if nothing else demonstrating how social media has speeded up the publishing cycle– Drazen published another editorial in an attempt to stem the flow of criticism and reverse the impression that NEJM was opposed to data sharing. Drazen said NEJM “is committed to data sharing in the setting of clinical trials” and that “we believe there is a moral obligation to the people who volunteer to participate in these trials to ensure that their data are widely and responsibly used.”

In the new editorial Drazen attempts to attribute the negative view of data sharing in the first editorial to others. Drazen shifts from the first person used in the first editorial (“Many of us who have actually conducted clinical research…”) to the third person: the negative comments in the first editorial came from “clinical trialists around the world,” Drazen now writes. Then he reverses his earlier stance to voice support for data sharing:

Many were concerned that data sharing would require them to commit scarce resources with little direct benefit. Some of them spoke pejoratively in describing data scientists who analyze the data of others. To make data sharing successful, it is important to acknowledge and air those concerns. In our view, however, researchers who analyze data collected by others can substantially improve human health.

 

 

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