Millions of people have provided their medical data to researchers in anticipation that a large collection of data will provide insight to disease and the role of genetics. Some databases are available to qualified researchers; some are only available to one or two entities for their own research; other databases are (or will be) available to nearly anyone asking for access.
In the case of InterMountain Healthcare, a Utah based healthcare system, they have a preponderance of patients from the Church of Jesus Christ of Latter-day Saints as clients – many, many generations of them. Family histories provide a great shortcut for understanding the genetic basis of disease. Intermountain has an exclusive deal with a company in Iceland, deCODE Genetics, which is owned by pharmaceutical giant Amgen, to sequence the complete DNA of half a million of its patients, with no plan to share the data outside of InterMountain.
The US Veterans Affairs Department minimizes its data sharing. Three-quarters of a million veterans, mostly men over age 60, have provided data to the VA. Only VA scientists and their collaborators are granted access to the vets’ medical records and genetic information. Dr. J. Michael Gaziano, a VA scientist and principal investigator of the Million Veteran Program, says that so far there are 30 projects involving this huge data set.
The National Institutes of Health plans to recruit a million Americans for a long-term study of health, behavior and genetics. Their information, once the details of personally identifiable information have been sufficiently masked, will be available to anyone interested. The All of Us research program reflects the vast diversity of the United States,” says Stephanie Devaney, the program’s deputy director. The program has been budgeted $1 billion in taxpayer money so far, and it’s expected to take another five years to recruit the million volunteers. The program anticipates needing another billion dollars to attain its goals.
These are just three examples of big bio data collection and usage in the United States. Each has its own goals and intended use, from monetization of data by the pharmaceutical industry to curing of disease and the understanding of human behaviors.
Call to Action: TrialSite News is accumulating examples of different databases for medical research purposes. Interested in learning more? Let us know at firstname.lastname@example.org