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Researchers resist sharing data to fight cancer

Feb. 4, 2016

Big data and data scientists are poised to transform medicine, but medical doctors are resisting. In the New England Journal of Medicine, Dan L. Longo, M.D., and Jeffrey M. Drazen, M.D., warn against “research parasites”—“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.”

In contrast, Vice President Joe Biden has said that “…science, data, and research results are trapped in silos, preventing faster progress and greater reach to patients. It’s not just about developing game-changing treatments — it’s also delivering them to those who need it.”

Biden, whose son died of cancer last year, proposes a “moonshot” (referencing John F. Kennedy) that will “[b]reak down silos and bring all the cancer fighters together—to work together, share information, and end cancer as we know it.” He adds, “Data and technology innovators can play a role in revolutionizing how medical and research data is shared and used to reach new breakthroughs.”

Arthur Allen in Politico notes that big data can lead to breakthroughs despite the many research projects that don’t yield reproducible results. For many genetic studies in particular, the only way to get reliable, replicable results is to contribute to studies that amass huge amounts of data—and thereby surrender the glory of publishing alone,” he writes. “That’s not an easy sell to those in the medical trenches.”

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