Twin Trends: Genome Cohorts and Data Sharing

Biobiz Brain shareTwin Trends: Genome Cohorts and Data Sharing

We wanted to highlight a couple of recent publications discussing the importance of having massive repositories of health and genomic information, the power of sharing genomic data across organizations, and our improving ability to analyze and interpret DNA sequencing data. Since we spend a lot of time designing and building capabilities within the Ingenuity Web-applications which facilitate permission based data sharing and collaboration here at  QIAGEN Silicon Valley, we were really pleased to see the recent public discussion.

An article in the New York Times covers George Church’s Personal Genome Project, which has enrolled more than 3,000 participants and published genomic data for some 600 of them so far. It offers a useful look at how biomedical researchers are deploying data from the PGP cohort, which makes all information publicly available, in their own efforts to track relationships between genetic variation, clinical observations, and phenotypes.

In another article,  from The Scientist, reporter Jef Akst looks at the growing trend of governments encouraging grant funding recipients to make their scientific data publicly accessible. Our own Nathan Pearson was quoted in the story, saying: “In many ways, [researchers are] using technology to bring science back towards how it used to be, where it was this very vital, living conversation among minds. … Along the same lines, I think it’s also important to start to speed up the idea of publishing, opening data to the community for discussion in this ongoing way.” The article goes on to discuss the need not just for more publicly accessible data but also for better analytical tools to help make sense of all this information. It also makes note of the valuable 400,000-person 23andMe cohort — customers of the company’s service who have made their own data available to company researchers studying genomics and disease.

This trend of citizens interested in contributing to science is building momentum. We are seeing it with our Empowered Genome Community, which allows people who have had their genomes sequenced to share, explore, and interpret their data with researchers and each other using QIAGEN’s Ingenuity Variant Analysis. At the recent GET conference  in Boston, several dozen people registered for the program. Our team was thrilled to see how much enthusiasm there was surrounding the effort, which we launched late last year.