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Thousands Join Nevada Population Study, Get Free 23andMe Genetic Tests


NEW YORK (GenomeWeb) – Twenty-four hours after Nevada-based care provider Renown Health launched a 5,000-participant study to investigate the health risks of the community it serves, the project reached its enrollment goal.

All of these enrollees, and an additional 5,000 Nevadans, will receive genetic testing for free from 23andMe.

Last week, Renown announced it would study the environmental, health, and genetic factors impacting residents of northern Nevada by collaborating with environmental sciences-focused Desert Research Institute (DRI) and consumer-focused testing company 23andMe. The non-profit health delivery network has the health histories of around 300,000 people, which it hopes to study alongside DRI's environmental research data and people's genetic information to identify health risks affecting residents.

"Combining genetic data with health and population data from Renown, as well as information from environmental databases, DRI scientists will analyze and model public health risks ranging from disease and illness to the effects of air quality on the health of Nevadans," the collaborators said in a press release.

The partners have described the project as a state-level Precision Medicine Initiative (PMI) — the national project launched last year by President Barack Obama aiming to enroll 1 million participants and study the medical, environmental, and genomic factors contributing to health and disease. 

"Just like every community we know, we have risk points and we're trying to evaluate what are the priority areas," Anthony Slonim, CEO of Renown, told GenomeWeb. "Because you can't do everything, we want to understand the patterns of care, where there is the highest frequency or highest risk for those we're serving, where we might be able to make our largest impact, and then go after those conditions first."

The knowledge gleaned from this study could inform the care Renown provides through its accountable care organization, where the aim is to provide quality care while keeping down unnecessary or wasteful spending.

The pilot study has around $2 million in funding, Slonim estimated, from the Renown Foundation, in kind contributions from DRI, Renown Health, and the Knowledge Fund — a $10 million budget allocation for research projects managed by the Nevada Governor Brian Sandoval's Office of Economic Development.

According to a 23andMe spokesperson, Nevadans responded enthusiastically to the pilot effort, announced last week. More than 270 people consented to participate within an hour after Sandoval held a press conference at the DRI in Reno. By the next day, the study had met its initial enrollment goal of 5,000 participants, all of whom will receive free genetic testing within the project. 

The Nevada population study is the latest project that will incorporate participants' genetic data through 23andMe's Genotyping Services for Research platform. The service, which 23andMe has been piloting for some time and officially launched this summer, simplifies the process of integrating genetic data into IRB-approved studies. 

Using the 23andMe platform, researchers can track spit kits received by participants (either in their homes or at the research facility) and download raw data on the 60,000 SNPs on the genotyping chip as samples are analyzed. 23andMe previously told GenomeWeb that it offers volume-based discounts to researchers using its genotyping service. 

Meanwhile, in return for contributing to research, participants receive for free 23andMe's genetic test results on ancestry, traits, wellness, and carrier status — the same genotyping service for which its customers pay $199. "We believe our responsibility is to serve the needs of all in our community," Slonim said. "We've taken the financial barrier away for the genetic testing because we want as many people as possible to sign up."

Because the study achieved its initial enrollment goal so quickly, Renown will continue to enroll participants and provide another 5,000 23andMe test kits for free. Ultimately, with more funding, Slonim said he hoped to enroll tens of thousands of northern Nevadans. 

Through a partnership with the Truckee Meadows Healthy Communities Project, Renown hopes to make 23andMe kits available at community health festivals in an effort to ensure that the study is ethnically, racially, economically, and geographically diverse. "We have very rural outposts here in Nevada, and that's one of our contributions to the science of genomics more broadly is that we're going to be able to test and inform based on those rural characteristics," Slonim said.

Historically, minority populations have not been readily included in genomics research, with only around 4 percent of genome-wide association studies done on samples from people of non-European descent. Additionally, early adopters of genetic testing, including services such as 23andMe's, are usually people who are college educated and come from a higher socio-economic background. 

Although the lack of diversity plagues all healthcare research, this can be particularly harmful to the adoption and application of genomics, which is a new and emerging science. Recognizing this challenge, there is a special focus on ensuring diversity in the President's PMI, while industry players have launched campaigns to provide free or low-cost testing as a way to expand access and improve understanding of the risks for underserved populations.

For example, last year Huntsville, Alabama-based HudsonAlpha Institute for Biotechnology announced it would offer free genetic cancer screening to all 30-year-old women in the community for one year. And 18 organizations said last year they would subsidize the cost of Color Genomics' breast and ovarian cancer risk test for their employees.

Similarly, genetic testing company Counsyl offered free hereditary cancer screening through a two-month initiative last year, and more than 1,500 women in the San Francisco Bay Area got tested. The effort showed that nearly half of the women who tested positive for mutations in cancer risk genes wouldn't have qualified for testing based on the latest screening guidelines. 

It is part of 23andMe's core mission to make research accessible on a large scale, spokesperson Andy Kill told GenomeWeb. "While it's not a primary goal of this particular study, to the extent it helps diversify research participation, we're happy to see that as an outcome," he said.

Kill noted, however, that volunteers in the Renown study don't have to participate in 23andMe's genetic research or the studies it conducts with other collaborators, which has recently led to publications on basal cell carcinoma and major depressive disorder. "We won't have access to any information as part of this [Renown] study, unless the participants subsequently elect to consent to 23andMe research," he said. "At that point, like any other customer, we'd be able to study their de-identified data in aggregate — and none of the environmental, health, or other information associated with the Nevada study." 

Slonim believes that Renown's study is currently the largest population-based health intervention effort in the country. "When you extrapolate from the individual family to the neighborhood, to northern Nevada, to the state, the extrapolation goes really far," Slonim said. "Those patterns of data allow you to understand just how well are people with diabetes being managed here in Nevada, [and] give you insights into which kinds of cancers we may be experiencing in Nevada in greater proportion to other states, and then we can look into why."

He hopes that the project in Nevada will inspire similar initiatives around the country so communities can learn more about residents' health and better serve their needs.