The U.S. government has ambitious plans for a long-term health study with one million Americans, and one of the world’s most powerful tech companies has a big part to play, including the storage of all the data on its “cloud” servers.
Google’s parent company Alphabet (NASDAQ: [[ticker:GOOG]]) and its wholly owned biotech R&D group, Verily Life Sciences, are helping build a secure center where health records, genomic data, and other personal information from hundreds of thousands of people can be collected, analyzed, and shared with health researchers. The federal initiative is expected to generate a trove of health information, to be gathered from “a rich diversity” of volunteers across the country, as National Institutes of Health director Francis Collins noted last month.
While many details remain vague, Google’s deep involvement comes as other key participants in the national effort—called the Precision Medicine Initiative—are raising concerns about the growing reach of tech giants like Google and Apple (NASDAQ: [[ticker:AAPL]]) into healthcare.
Those concerns are shared by the public. In a survey published this summer by digital health investment firm Rock Health, respondents were generally positive about sharing their health records and genetic data. But they did not view tech companies as trustworthy stewards. In fact, tech companies shared the lowest marks along with government, which underlines one of the national study’s big question marks: how quickly will people sign up for an effort whose premise—the more volunteers, the deeper the insights into ever-more tailored medical treatments and preventive health—requires mass participation?
Collins, whose organization is overseeing much of the initiative, raised the question last month, even as he announced a goal to start recruitment by November, only four months away. “We’re curious to know whether we’ll be deluged or have to work harder to get the word out,” Collins said.
PMI officials acknowledged the importance of gaining the public’s trust. “It’s front and center in every decision we’re making,” said Gwynne Jenkins, the chief of staff for the PMI cohort program, the team building the volunteer database.
To be clear, health data that citizens contribute to the study will be open for research under the purview of the government—not held privately by Google or the other two dozen entities that are building and running the four cornerstones of the PMI.
Only a few of those entities are for-profit companies; Google, via Verily, is the highest-profile. Its participation was first publicly revealed in February, when the Obama administration unveiled a pilot project run by Vanderbilt University and Verily to test volunteer attitudes and potential recruitment strategies. The two organizations were going to build an online “portal”—a term from the old dot-com days that described the efforts of Yahoo, Microsoft, and others to attract Web surfers with search, news, and other information. Verily chief medical officer Jessica Mega said in June her group was well suited to help because of its experience with user interfaces and “the right cadence of engaging people.”
Verily’s role has since shifted, however. When Collins announced in July the four multi-million-dollar cornerstone PMI projects, the Vanderbilt-Verily group was put in charge not of recruitment but of an entirely different piece: a coordinating center, headquartered at Vanderbilt’s medical center in Nashville, TN, that will gather all the data generated by the nationwide study and make the information available to researchers. The first year of the grant for the Data and Research Support Center is worth $13.6 million, with potentially $72 million over five years. Vanderbilt is the lead contractor.
It was “always the plan” to apply for the coordinating center job, said Vanderbilt associate professor of biomedical informatics Joshua Denny, the school’s PMI point man. Vanderbilt had a head start stumping for it. A top spot for health informatics research, the school already houses a national research center for electronic medical records and genomics, funded by the NIH’s National Human Genome Research Institute.
Joining Vanderbilt and Verily is the Broad Institute of Cambridge, MA. The Broad will contribute its expertise generating and working with vast genomic data sets, as well as sophisticated tools to help researchers make sense of the data the PMI aims to collect.
So where does Verily fit in? Its parent company does data infrastructure and analytics like few other entities on Earth. Vanderbilt’s Denny told Xconomy that the PMI data center would use the Google Cloud data storage platform. (Google has a division of its cloud business tailored to genomics data. It even has a price guide.)
But Verily itself is best known as a kind of blue-sky lab for device-centered health projects, such as a “smart” contact lens to monitor a diabetic’s glucose level, or electro-implants to rewire a patient’s disease. It’s the life science version of the Google X think tank that has produced Google Glass and the self-driving car initiative.
Verily also aims to run its own long-term health study, called Baseline, which is not affiliated with the PMI. But why it, and not Google, needs to be a front-facing entity on the PMI data center project—even one dedicated to healthcare data—is less clear.
Verily officials insist that their group, not Google, be identified as the PMI contractor. When asked what health expertise Verily would bring to the table beyond Google’s data management systems, officials with Verily (and everyone else Xconomy interviewed for this article) were quick to caution
