Have you had your genome sequenced? Has the person at the next cube over. Statistically speaking, neither of you have. Until recently, it’s been prohibitively expensive, but that problems resolving itself as the cost of personal genomic sequencing edges south of the $1,000 barrier.
But the rapidly falling costs hasn’t lead to a boom in sequencing requests–yet. Andhat’s a problem for direct-to-consumer genetics companies who seemingly haven’t been able to get over hurdles of price, capturing the public’s interest and regulatory practice that have stymied reporting of health information to customers.
But the market is not so stagnant it can’t attract new players. Last week Illumina*, a company that primarily provides genome sequencing services for healthcare and research applications, announced that it was starting a direct-to-consumer company called Helix. Illumina is the largest sequencing company in the United States. It’s raised, along with its partners more than $100 million to start the project. The Mayo Clinic, Lab Corp and two investment firms are also partners.
Helix will be like an ‘app store’ for genetics information according to a statement from the company. The idea is that someone will download a $20 app for genealogical analysis and submit a sample to be sequenced. Illumina will do the specific sequencing for that test plus an extensive sequencing of all the genes that make protein and a few other sites known to be of interest. That will cost the company about $500. The customer will get back their genealogy results, and the next time they purchase an app, the sequencing will already be done.
Helix will essentially front the cost of sequencing based on premise that their customers are going to come back to access their genetic information through other apps offered by companies that partner with Illumina. The app that first got a consumer to pay for it, essentially the first app they downloaded, will get a licensing fee every time the user downloads another app.
Security is of utmost concern here. If there is any take a way message for the Ashley Madison hack it’s that people are interested in obtaining extremely sensitive information and that even online organizations that tout their security are vulnerable. Let’s not forget the IRS hack, too. Illumina CEO Jay Flatley didn’t have a substantive response when asked about it. But if multiple app developing companies are going to be interfacing with customer’s cloud-based genomes security needs to be publicly addressed.
Another issue is how Helix is going to deliver what it’s promising given the FDA regulations that shut down 23andMe’s business in the genetic health reporting. Since then, 23andMe has been working with the FDA in approving health tests individually, but has stayed away from the comprehensive health analysis they initially offered their customers and continued to update as new information was made available. Helix said it will work closely with the FDA. But having the Mayo Clinic and LabCorp as partners in the venture indicates Helix plans to include health information in their products.
If the ultimate problem with direct-to-consumer sequencing is the lack of interest in the product, Helix is not that different from what’s currently available. An app-based product might not overcome the fundamental issue says Antonio Reglado at Technology Review:
So far, interest by consumers in genomics has been fairly tepid. Who do you know whose genome has been sequenced? The problem is that for healthy people, the genome just isn’t that important. What does it mean? What is it good for? Even though sequencing a genome has become much cheaper, just a couple of thousand dollars, to most people, finding out isn’t worth the cost. Even Flatley, whose genome is sequenced and posted to the Internet, has called the experience ho-hum.
Creating a serial payment business might be a good business model in a field where there are multitudes of new discoveries every year, but little changes in terms of impacts on patient health, recommended prevention measures and knowing which region of the world your ancestors came from. You can begin to monetize now and focus on customer base expansion, while betting that your customers will continue to pay. But will consumers be willing to pay every year to have their breast cancer risk reanalyzed based on more recent knowledge? How will customers even know to do it?
For a consumer, is it worth it to pay for sequencing a little at a time? May be if you want to get a deal on a very thorough sequencing and think you can limit your purchases. Given that actionable health knowledge gleaned from our genomes seems to get made incrementally, maybe that’s a good idea. But, in essence you are still giving away your genome to Helix, then buying it back as you want to access information. Although you might think you own your medical information, that is largely untrue.
Increasing the number of people who are sequenced is reportedly the goal of this endeavor. Illumina will build out the gigantic laboratory needed for the predicted surer in sequencing. It seems the company is willing to take on a great deal of upstart costs to bet on a future in which it shares profit with other companies. According to the New York Times report, “The creation of the new company, which has been in the works for more than a year, is an unusual move that its backers say is meant to help support the genetic analysis ecosystem. What Helix is not meant to do is favor any particular partner.”
Meredith Knight is a contributor to the human genetics section for Genetic Literacy Project and a freelance science and health writer in Austin, Texas. Follow her @meremereknight.
*Disclosure: The author owns approximately 100 shares of Illumina stock.