ASH Clinical News May 2016 | Page 72

A warning against “research parasites” may open the door to better data sharing It all started with an editorial published by the editors of The New England Journal of Medicine (NEJM), innocuously titled, “Data Sharing.”1 The authors, Dan L. Longo, MD, and Jeffrey M. Drazen, MD, praised the idea of data sharing in theory, but contend that one of the unintended consequences of sharing research data may be the emergence of a new class of researchers known as “research parasites,” described as “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.” 70 ASH Clinical News Before long, a heated debate broke out in the research community about the merits of open data sharing, with proponents of data sharing arguing that science moves forward through collaboration, not through exclusion. Data sharing, they maintained, is the necessary evolution of medical research. Using hashtags like #researchparasite, #IAmaResearchParasite, and #opendata they expressed their support for data sharing and breaking down the silo mentality in scientific research. On the other side, researchers are concerned about the unfair use of data without attribution. The vastly opposing viewpoints on the issue suggest that data sharing might not be as simple in reality as it is in theory. The recent debate brought to light the divide that exists between the clinical investigators who collect the data and the scientists who later want access to those data – the hosts and the parasites, if you will. ASH Clinical News spoke with members of the research community about the ethics behind data sharing, the potential drawbacks of the open-data movement, and the questions that still need to be answered. The Case for Data Sharing “One of the big reasons why a bunch of us have been advocating for data sharing is we think that not sharing data is actually a violation of the promise we made to patients,” Vinay Prasad, MD, MPH, a hematologist-oncologist and an assistant professor of medicine at the Oregon Health and Sciences University, said. Much of the initial conversation about data sharing has focused on clinical trial data for several reasons, according to Dr. Prasad. Clinical trial data are ideal for data sharing because of the implicit consent process already built into trial designs. Patients, in most cases, are already told their data will be used to help future patients, with the implication that the data may be used beyond the scope of one study. The volume of data collected during a clinical trial can also make it difficult for a single research team to have the time and resources to fully use all of the data that have been gathered, making collaboration among teams a necessity. “I’ll be perfectly honest, I’ve done a lot of May 2016