No, really; you’re very special.
In fact, as you’re probably well aware, you’re one-of-a-kind, an infinitely unlikely collection of little bits of matter that have coalesced over billions of years into Kevin Bacon (if you happen to be Kevin Bacon) and that are infinitely unlikely to exist anywhere else in this universe.
Now, take the extraordinary, remarkable, consequential essence of you… the building blocks that make you unique and individual. Extract that information from a nucleus containing over three billion DNA base pairs – sequence the six billion letters in your genome thirty times to eliminate errors to a clinical standard…
And then give it to someone else, a for-profit company, receiving nothing in return but a hint that your grandmother was from the Emerald Isle.
Not the best deal in the world, is it?
All Your Genomes Are Belong To Us… Oh, Wait, No They Don’t.
Genomes.io is a new entrant to the field of genome sequencing, and part of the Tachyon Accelerator cohort demonstrating their progress in San Francisco today.
Dr. Mark Hahnel is the Chief Scientist of the company, with a PhD in stem cell biology. “We came to the realization the everybody in the world is going to have their genome sequenced at some point – and when it’s out there, it’s out there.”
His concerns regarding the rising popularity of genetic analysis through companies like 23andMe run deep.
“When you make your genome available to a company like that, you expect them to be trustworthy. But they sold five million gene sequences for $300M to GlaxoSmithKline,” he explains. (GSK describe the arrangement as an ‘equity investment‘.)
The Genomes.io solution is to create a highly-secure ‘DNA data bank’ that will allow individuals to decide how they do – and don’t – want to share their genetic data. According to their website, “This allows users to control access and share segments of their genome in a repeat consent model with accredited researchers in a secure, private and anonymous manner.”
The ‘repeat consent’ model means that access to the data bank is provided on a case-by-case basis. So by querying it, you can add revenue or subtract revenue. For instance, if GlaxoSmithKline wants to find information on males aged 25-34 from sub-Saharan Africa, it can request that profile from Genomes – which acts as a broker, and the keeper of the vault.
Users are able to view genetic reports generated from their DNA data within this vault including ancestry composition, traits, health risks, wellness, and carrier status. They can earn the opportunity to query their own data by completing health and lifestyle surveys or granting permission for researchers to query their DNA data in a secure and anonymous manner.
In addition, the user gets updates about the research they contribute to.
The key is that Genomes has to request user permission to share the data – which will have a value attached to it. GSK deposits its cash, and the user receives a payment (with Genomes taking a fee).
If you don’t like GSK, or don’t want to share with them – you don’t have to. You might only want to share it with, for instance, breast cancer research institutes.
And as the ‘personalized medicine revolution’ evolves, the next time you are sitting down with your doctor and discussing the burning sensation in your stomach after a hearty curry, she can access your data and use it in a diagnosis or prognosis.
Your data just cost you a little; but it may save your life.
How Genomes Uses Ethereum
Once a user gets their genome sequenced by one of the sequencing partners or submits their genetic data, the platform creates containers that hold it securely and privately, while also providing the user with the ultimate control over query execution and data availability in this environment.
The platform container stack uses LibVirt – the API that controls the hypervisor, KVM + Qemu for fully virtualized machines as well as OVMF for overlaying file systems, while also leveraging AMD SEV ( Secure Encrypted Virtualization ) for protecting in runtime memory.
From an end-user perspective, after purchasing DNA sequencing or uploading pre-existing DNA data, their data lives within their personal vault. Only they hold the access key to it.
Ethereum is used primarily for transparency, by storing Merkel trees from the audit data, used throughout the system. In starting out, Genomes wanted to ensure security and transparency as our ultimate priorities. From here we can begin migrating towards more decentralization so this will include using blockchain for payments and trustless job execution.
Dystopian Futures, Replicants, That Sort Of Thing
The value of the human genome – since it has now been proven to have monetary value – is such that “There are people going around and giving the homeless $20 for saliva samples to get their genome,” claims Mark. “There is value in the data, and people are monetizing it – they’re sequencing genomes as a loss leader, like 23andMe. If you have the largest genomic database, it’s worth a lot of money.”
He points to other use-cases that sound eerily Orwellian.
In one instance, the New York Police Department reported collected DNA from 150 or more people as they searched for a murder suspect; according to The Trace “The DNA from many of the others was labeled “suitable for entry” into the city’s database — meaning that, although those people were never charged, their DNA can remain on file indefinitely and be run thousands of times a year against biological material found on victims and evidence. Police wouldn’t say how they identified the people whose DNA was collected.”
Hahnel is quick to point that while the company is designed to produce ‘social good’, it is also a business that intend to “make a lot of money”.
“The number of people who are going to get their genome sequenced in the next five years is incredible. In the UK, the NHS is sequencing five million genomes – that’s 10% of the population. In the US, if you are born with a rare disease your genome is automatically sequenced.”
The genome sequencing industry is clearly growing exponentially – which is often a sign that both rogues and heroes stand to profit.
And since the human genome contains information that can be used to assess the likelihood of certain attributes in the offspring of the donor, the potential for misuse is almost as frightening as the fact that Big Pharma and the FBI are storing your genome in their databases.
The need for a solution that advocates for privacy and personal ownership of data is perhaps even more pressing than it seems to be in social communication, or financial transactions.
After all, as Hahnel says – only half-jokingly – “Blade Runner isn’t too far away.”
That’s Hahnel, not Tyrell.
Thanks to Lesa Moné of ConsenSys for contributing her technical expertise and writing to this piece.
Tachyon is a 10-week accelerator program by ConsenSys Ventures that takes early-stage blockchain projects from idea to viable MVP. The second iteration of the Tachyon Accelerator kickstarted on April 1st, 2019, at the Bundestag in Berlin, Germany, and the projects will present their progress in San Francisco on May 22nd, 2019.
Crypto Briefing has partnered with the Tachyon Accelerator to highlight a handful of the imaginative projects that are looking to change the world with Ethereum.
We are not compensated by any organization for our work.