NPR

How Should Scientists' Access To Health Databanks Be Managed?

Medical and genetic data from more than a million Americans are now in scientific databases. Some programs hoard the data, while others share widely with scientists, hoping to speed medical discovery.
UK Biobank has granted 10,000 qualified scientists access to its large database of genetic sequences and other medical data, but other organizations with databases have been far more restrictive in giving access.

More than a million Americans have donated genetic information and medical data for research projects. But how that information gets used varies a lot, depending on the philosophy of the organizations that have gathered the data.

Some hold the data close, while others are working to make the data as widely available to as many researchers as possible — figuring science will progress faster that way. But scientific openness can be constrained b y both practical and commercial considerations.

Three major projects in the United States illustrate these differing philosophies.

VA scientists spearhead research on veterans database

The first project involves three-quarters of a million veterans, mostly men over age 60. Every day, 400 to

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