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Different Data-Sharing Philosophies

Three large-scale genetic research projects in the US have different takes on how accessible to make the data they collect to the wider scientific community, NPR writes.

It notes that the Million Veteran Program, which was started in 2011, only allows Veterans Affairs researchers and their collaborators access to participants' genetic and medical record data. The project's PI, Michael Gaziano, tells NPR that he'd like to increase the ability of academic researchers to access the data, though access to the computers on which it is stored is highly controlled.

At the same time, NPR writes that Intermountain Healthcare has teamed with Amgen's Decode Genetics to sequence its patients, but doesn't plan to share that data beyond any publications stemming from their work. It notes that other medical systems like Geisinger Health and Kaiser Permanente have similarly restricted databases.

Meanwhile, the National Institutes of Health's All of Us program, which launched last year, plans to make the data it is collecting widely available, not only to researchers in the US, but around the world, NPR says.