As long as we’ve been doing clinical genetics, the goal has been to marry up the genetic data with phenotypic data in the electronic medical records. This has been achieved with some success and with a few of the best genetic markers at some of the leading healthcare providers: Geisinger, Rady Children's, Brigham and Women’s—to name a few. But it hasn’t happened at scale, at least not in this country. Some of the national health services around the world are making the dream more of a reality, for example in Iceland and the U.K.
There is a movement, however, growing particularly strong in the current politics of deregulation for consumers to do it themselves by managing their own EHRs, genetic, and fitness data together in an online account similar to their financial accounts. Today we talk with Ardy Arianpour, the Co-founder and CEO of Seqster.com, a site recently out of stealth now offering such a service to early access customers.
If the business model of sites like Seqster is dependent on big pharma buying up the collected data in high numbers for their own purposes, what will make a certain platform "the one" or one of "the chosen few?" Indeed, as more and more private companies swarm to be this service and gather our private medical data, what will give us consumers the trust to take part?
“It’s already happening unidentified. So why not be fully transparent: involve the participants, the users, the patients so that they can collect, use and share their data on their own terms? All we’ve done [at Seqster] is created a technology that has that mission for its members,” says Ardy.
Followers of Mendelspod may remember hearing Ardy on the program from his days as Chief Strategy Officer at Pathway Genomics. Prior to that he served as Senior Vice President at Ambry Genetics which last year sold to Konica for $1 billion.