Olivier Noel came on to Shark Tank touting the benefits to researchers of his company DNASimple: relevant biological tissues, available on-demand so studies could run more quickly. Instead of spending precious time finding samples, academics could have access almost immediately, allowing them to jump ahead to the testing and analysis part of the research.
But there’s the consumer side too, as people finally get paid for their DNA. This, in itself, is part of a newer, more revolutionary movement. Back in 2016, Beth Daley reported on the rise in “bio-rights,” referring directly to DNASimple’s cash-for-samples business. In the past, samples were taken either without patient consent or, if consent was provided, on a donation-only basis. Not only did patients receive no compensation, they had no access to relevant medical information contained in their DNA.
As Daley’s report discussed, a 2015 survey found that 68 percent of patients were willing to give their tissues to research, but support dropped to 55 percent if the research would be used to earn profit for commercial companies. That statistic may be evidence that, with rising health care and prescription drug costs, patients are no longer willing to trust that simply handing over precious information will ultimately benefit them or others.
On Shark Tank, DNASimple got an investment from Mark Cuban and interest from Richard Branson, perhaps because of the efficiency it provides for scientists. As Noel told his alma mater, Penn State, in early 2017, the process of sample collection is burdensome and a primary reason why genetic research moves so slowly.
“People don’t realize it can take years to get samples, but really only a month to get an assignment done … which is a little bit ridiculous.
“It’s a problem for geneticists across the board. You can have a million dollars to do a study, but waste three years trying to get samples.”
As much as patients want medical information contained in their DNA, and compensation for samples, they may also be concerned about privacy. DNASimple says it doesn’t hang on to the DNA it collects; according to a RedditAMA conducted by Noel and Joel Coble shortly after the Shark Tank appearance, users sign up with the site, are matched to a study based on their profile, and then submit a sample. The sample is stripped of identifiers and forwarded directly to researchers. The pair also reassured Reddit users that they only work with researchers already cleared to collect samples from people.
DNASimple won’t necessarily give you a mockup of your genetic code, however. According to the RedditAMA, it’s up to the researcher to decide what you know about the DNA of yours that they use.
“We work with researchers who each individually have gone through a rigorous approval from the IRB to do research. Part of that process in the case of genetic research is dealing with off target findings. I cannot atone as to what their individual IRB approvals require. That being said, there are particular genetic variants that are known as clinically actionable variants. These are variants the NIH has determined are extremely likely to cause disease and there are prophylactic measures that can be taken. Those variants are often reported back to the individual so they can be informed and make the decision if they would like to those measures.”
At the time of the Shark Tank broadcast, DNASimple was aiming for a user base of 100,000 potential donors. It had already grown from 5,000 to 20,000 after another angel investment of $250,000 from Linus Ventures.
Shark Tank is currently rerunning on ABC and CNBC and new episodes are expected in Fall, 2018.