Our genomes hold a fantastic amount of information about ourselves. In theory, they explain much about our health, physical characteristics, and even personality traits. And it’s easier than ever to access our own genetic information, with sequencing technology rapidly becoming cheaper and better.
Yet despite all that, most people don’t get their own DNA sequenced — in part because it’s still hard for the average person to get any practical knowledge from the information in their genomes. We still don’t know how to interpret a lot of our genetic information.
Unless a person is curious about their ancestry or is a patient suffering from cancer or an unknown disease, there’s not much to be found, especially without the help of a trained geneticist. And unless more people allow companies and research institutions to start looking at their genetic information, it will be hard to improve that situation and get any closer to the promise of the human genome.
Helix wants to be the hub that connects people (through their genomes) to companies that can offer some useful information based on that genetic material. It’s like an app store for your DNA.
Here’s how this works
There’s a common belief that we are now — finally, or probably — at the point where genetic information is about to become a lot more valuable. There are major research initiatives that support this information. The Precision Medicine Initiative plans on looking at genomic data for a million people, and that’s just the start. As more and more researchers and big data analysis systems start to pick through people’s genomes, a wealth of new information about those genetic codes should become available.
Because of that, there should be more and more companies that will soon be able to help interpret this information.
“Genomics is reaching an inflection point in cost, volumes, and knowledge, creating a significant opportunity to unlock information that is currently not widely accessible to individuals,” Illumina CEO Jay Flatley said in a press release.
Helix’s plan is to be the connection point that stores your genomic data and connects you to a company that can analyse that data.
As MIT Technology Review’s Antonio Regalado explains it, you might use one Helix app to check and see if you have a gene that makes you particularly suited for certain sports — something that sport specialists have started to test for around the world. If this was your first time using a Helix “app,” you would send in something like a spit sample first.
Helix would then sequence your genetic information, and according to what Flatley told Regalado, they’d do more than the basic genetic sequence that you get with some other services (though not the entire full genome sequence). This would give them what’s potentially a huge amount of health data.
You’d then pay that sports genetics company whatever their fee was, and they’d give you the report based on your genetic information. Helix would then store your genetic data.
The next time a Helix app appealed to you — the first two official partners are the Mayo Clinic, also an investor in the company, and Laboratory Corporation of America, a diagnostics company that also does blood tests — you could pay the company that runs that app, and they could then access your genomic information and send you their analysis of your DNA.
What it means
Provided users give their permission, companies may also be able to analyse (potentially anonymized) genomic data to further their research as well. Eventually, that kind of data could lead to to even more useful information from each individual’s DNA.
Creating one hub for genetic services could be what prompts people to start looking to see how genetic information could transform their day-to-day life. And if Helix can handle the lab side, the genome sequencing, the data storage, and the considerable privacy concerns most potential users will have, they can then just make that genomic information available to partners. This could make it easy for anyone with an idea for a genome-analysing service to tap into the system, making it possible for many companies and scientists who don’t have the capacity to develop such a complex end-to-end system to participate and contribute their sliver of genomic expertise.
At the start, it’s unlikely you could get any health information from your DNA sequence. But if Helix — or Helix and a coordinating app — get FDA approval to provide health information based on genes, that could change.
Before Helix’s announcement, we spoke with George Annas, bioethicist and author of “Genomic Messages,” about where genetics is going next and when it’s going to start mattering to the average person.
“It’s probably the creation of new websites and things your smartphones can do” that will connect you with your genomic data, he said, rather presciently. The Helix platform seems to be the first step in this new direction.
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