A new kid on the consumer genomics block

Genos entered the consumer genetics field as an underdog on Thursday, unveiling a sequencing service that is more comprehensive, but two-and-a-half times the price of the industry standard kit from 23andMe.

After several years of R&D and a six-month beta run, customers will now decide whether it’s unique value propositions can justify the cost. Successful or not, the Complete Genomics spin-out is raising some interesting questions about personal ownership of medical information and how genetic research should be conducted.

As part of the consumer launch, the company also announced partnerships with The Utah Foundation for Biomedical Research, The Prion Alliance, and several companies within Patrick Soon-Shiong’s Nantworks empire, including Nantbioscience and NantKwest.

Soon-Shiong has also invested directly in Genos. It’s an underdog with some powerful backing.

So what can it add to the space? For Genos CEO and Cofounder Mark Bluming, the answer is three-fold.

The first is the volume of data generated. Traditional sequencing companies such as 23andMe and Ancestry screen for single nucleotide polymorphisms (SNPs). Pronounced “snips,” these are common variants that occur between individuals. Very rare mutations are unlikely to be picked up.

Genos, on the other hand, will begin its service screening the entire exome. That’s all of the protein-expressing genes in the human genome. According to its beta website, this yields 50 times more information than the standard SNP run. Bluming said the company aims to eventually sequence entire genomes, another major leap again.

The upsell will cost consumers, however. Genos’ test is priced at $499, significantly more than the $199 23andMe kits and the basic ancestry services that go for $99.

Comparing apple to apples, $499 is a good price for CLIA-certified whole exome sequencing (WES). But do we really need all the additional information?

For the most part, no. Consumers won’t necessarily learn more about their health. Genos is subject to same FDA restrictions that have curtailed the wider field. The report can highlight different traits (blue vs. brown eyes, lactose tolerance) but it can’t deliver diagnostic information or relative risks for certain diseases.

So why do it?

Whole exome sequencing benefits science, Bluming explained. Researchers can use that information to expand the field and find new correlations that can help us better understand health and disease.

“In terms of the utility of the data, that is essentially what the whole goal of the company is — to really focus on driving research,” he said in a recent phone interview.

Very few individuals will be prepared to pay $499 to a for-profit company for the good of research. But there is a financial upside. Genos acts as an intermediary between researchers and consumers. This means that instead of selling a customer’s genetic data behind closed doors, it presents different studies to the individual and pays them if they choose to participate.

This is the second value proposition outlined by Bluming — rich services that allow customers to do more with their genomes. The studies will pay between $50-$200, he explained, after the company has taken its intermediary cut. It’s a win-win-win for researchers, Genos, and consumers.

Could this offset the initial cost? It’s unclear at this point. Bluming is certainly not selling the service as a way to leverage personal genetic data for cold hard cash. It’s a way for the public to participate in science and get some returns for the information that would otherwise be sold on their behalf.

Which brings us to the third value proposition: customers can manage their own genomic information.

“We have a strong ethos and belief that users should own and control their data and they should do so always,” Bluming said.

It’s a huge issue in today’s healthcare landscape. From electronic health records (EHRs) to genetic data, patients aren’t in the loop when it comes to their own medical information.

Flatiron Health and Foundation Medicine recently launched a giant clinico-genomic database, drawing on the EHRs of 20,000 cancer patients and merging them with tumor sequencing results. It’s for the good of science, but Foundation and Flatiron are making a profit and the patients didn’t directly give consent.

Closer to home, 23andMe has created a business out of its consumers’ data, selling the information to biopharma companies to help them develop more targeted drugs. It’s legal, but is it ethical? Most 23andMe patients check the box that allows their data to be used in research. It seems a noble thing to do. However, the consent form doesn’t make it clear that the individual’s information would be sold on their behalf, without them getting a penny.

Genos isn’t the first startup to tackle this issue. San Diego, California’s Portable Genomics has been working for over six years to transfer ownership of genomic data to patients and have them reap the benefits when it is sold for use in research. Portable Genomics hasn’t reached the critical mass required to truly influence the industry, but maybe Genos can.

The San Francisco startup wants its patients to be engaged and empowered by studies that use their whole exome sequencing results. It’s not a blanket waiving of ownership rights for the ‘good of research.’ Individuals need to consent to each and every study, Bluming said, to ensure they’re informed and in control.

“We kind of view this as sequence once, and experience multiple times moving forward,” he explained.

It may be that final feature that helps justify the higher cost for some individuals. The whole exome sequencing and the community platform can deliver a much more lasting experience. All going well, their insights will grow in response to the science they enable.

Photo: Genos

Correction: An earlier version of this article stated that the service provided by Helix focuses on SNPs. They do whole exome sequencing.