Big Data Biobanks Aren't Equally Open To Researchers : Shots - Health News 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.
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How Should Scientists' Access To Health Databanks Be Managed?

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How Should Scientists' Access To Health Databanks Be Managed?

How Should Scientists' Access To Health Databanks Be Managed?

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NOEL KING, HOST:

All right. More than 1 million Americans have donated their genetic information and medical data for research projects. It's great for science when this information is available, but how should it be shared? NPR science correspondent Richard Harris looked at three different philosophies.

RICHARD HARRIS, BYLINE: The first project involves three-quarters of a million veterans. Every day, 400 to 500 blood samples from this group shows up in a modern lab in the basement of the veterans hospital in Boston. Luis Selva is the center's associate director.

LUIS SELVA: This area that you're - we're standing in, we can process both robotically, the samples. And we also have an area - just to my left - where we can process the samples manually. So what you're hearing now is actually the shaking, or the agitation, that's taking place to be able to help and isolate the DNA.

HARRIS: The DNA is tagged with a code number and sent out for analysis. Selva explains that the sample, marked with a barcode, is stashed in an enormous freezer, here, for future use.

SELVA: Half of that inventory is kept locally, and the other half is sent to our secondary biorepository in Albuquerque.

HARRIS: Only VA scientists and their collaborators are granted access to the vets' medical records and genetic information. Dr. Michael Gaziano, who is principal investigator of the Million Veteran Program, says so far there are 30 projects involving this huge data set. The participants are mostly men over 60, and the studies emphasize health issues of concern to vets.

MICHAEL GAZIANO: In areas of schizophrenia and bipolar disease, in PTSD, cardiovascular disease, diabetes, hypertension.

HARRIS: Contrast those 30 studies to more than a thousand studies that are underway using the much more accessible data set at the British-based UK BioBank, which is arguably the world's leading resource of this sort. The U.K. project has had no security or privacy issues, but still, Gaziano isn't about to let the VA data be that readily accessible.

GAZIANO: I don't think that we completely understand all of the security risks as we move into this new era. So I think we're being quite cautious.

HARRIS: The data are being ported to Department of Energy computers with the hope that more scientists will eventually be able to make use of it.

GAZIANO: We view this as a national resource, and it's a national resource that will not only help veterans but will help all Americans and mankind.

HARRIS: Our second example involves what is largely an extended family - descendants of settlers in Utah. Earlier this year, Intermountain Healthcare in Utah announced it was going to sequence the complete DNA of half a million of its patients, which they say will be the largest collection of its kind. Company scientist Lincoln Nadauld says, these people are a rich and unique resource.

LINCOLN NADAULD: We have families who have been here for three, four, five, six generations, and we've taken care of families for multiple generations. So we have health information, health histories on those families and patients.

HARRIS: Family trees provide a great shortcut for understanding the genetic basis of disease. And to plumb this information, Intermountain has an exclusive deal with a company in Iceland, deCODE Genetics, which is owned by pharmaceutical giant Amgen. DeCODE will do the sequencing and get to scour that information with an eye toward developing new drugs.

NADAULD: It would be natural for deCODE and Amgen to do that, given their expertise and experience there. Conversely, if there's an opportunity to implement some novel discovery or finding into clinical care, Intermountain Healthcare will take the lead on that.

HARRIS: Our third and final example is an effort by the National Institutes of Health to recruit a million Americans for a long-term study of health and genetics. Stephanie Devaney, who is deputy director of the All Of Us program, described something quite different than the homogeneous population from Utah.

STEPHANIE DEVANEY: We do have a very strong goal around diversity, in making sure that the participants who enroll in All Of Us research program reflect the vast diversity of the United States.

HARRIS: They've been budgeted $1 billion in taxpayer money so far, and they expect it will take another five years to recruit their million volunteers. So far, she says they are getting excellent diversity in the sample.

DEVANEY: We set up from the beginning, when we consented our participants, that all different types of researchers would be able to ask for access to the data. We're not limited to just folks that work at a certain institution or even who live within the United States. I mean, we will be open for foreign researchers, and we will be open for folks in the private sector and the government and academia and even, ultimately, citizen scientists.

HARRIS: They still need to work out exactly how they will provide this access while assuring privacy and security. But the goal is to make it as accessible as possible, figuring that the more smart people who can see the data, the more likely they are to make discoveries that can benefit us all. Richard Harris, NPR News.

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