Richard Harris at NPR: “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 500 blood samples show up in a modern lab in the basement of the Veterans Affairs hospital in Boston. Luis Selva, the center’s associate director, explains that robots extract DNA from the samples and then the genetic material is sent out for analysis….
Intermountain Healthcare teams with deCODE genetics
Our second example involves what is largely an extended family: descendants of settlers in Utah, primarily from the Church of Jesus Christ of Latter-day Saints. This year, Intermountain Healthcare in Utah announced that it was going to sequence the complete DNA of half a million of its patients, resulting in what the health system says will be the world’s largest collection of complete genomes….
NIH’s All of Us aims to diversify and democratize research
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, behavior and genetics. Its philosophy sharply contrasts with that of Intermountain Health.
“We do have a very strong goal around diversity, in making sure that the participants in the All of Us research program reflect the vast diversity of the United States,” says Stephanie Devaney, the program’s deputy director….(More)”.