NOTE: When this video was taken EDNA was branded as “The AGE Project”. We apologize for any confusion this may cause
Currently the world of genetics is advancing faster than just about any technology out there, and there is no sign of it slowing down. Hundreds of papers are published everyday and it’s hard to even just read the titles, let alone keep a firm grip on the science. This is an amazing time to be human. As this science evolves we can expect to see changes in personalized medicine that to most people will sound like science fiction. We can expect this technology very soon to eliminate horrible diseases, extend our lives and generally improve what it means to be human. This is happening now and it’s very exciting, till you ask one question…
“Who controls it?”
Most people are probably aware that bad things can happen when centralized authorities gain control over our money. I would bet very few have thought about what might happen when centralized control is taken over our DNA. Who decides which of us gets all the magic cures and the 300 healthy years to live? Who decides if you can give your child an amazing IQ and physical advantages or not? It has been said; “Information is power”. I might say “Genetic information is power over life.” Centralized authorities (by that I mean governments and mega-corporations) want that information. Want YOUR information. They charge you much less than it costs them to process your information just to get it. I’ve even been told that in my own state detectives are asking witnesses to crimes for a sample of their DNA. Not just suspects – Witnesses. Something seems very wrong here to me.
When corporations and governments want something from you, it might be a good idea to ask why before you just give it over.
EDNA exists to keep that power in the hands of those it rightly belongs to. Your DNA is yours, and mine is mine. Current published science understands clearly only about 1.5% of what’s in our DNA. If you will please pardon the metaphor; “It’s like each of us is carrying around a treasure box, and even the very few of us that have peeked inside the box have only seen a tiny bit of what’s in there. Why would anyone give that box away without knowing what’s inside? Or worse, pay someone to take their treasure box away from them?” But this is what’s happening today. EDNA is here to help you hold onto your treasure and to help you learn what’s in your box.
We have developed a prototype that can convert saliva samples to data in such a way that can be safely and economically stored unencrypted.
We have developed a procedure where samples can come to us that are labeled with nothing put a public key (so we have zero identity data), and we can populate the wallet for that key with the ability to reassemble the DNA. This puts control of the information in the hands of the DNA owner.
We were one of the first Airdrops on EOS and did a one for one Airdrop to all EOS holders who had 100 or more EOS on the Genesis Snapshot, and those with less than 100 who registered on our website.
We’ve enhanced our eosio.token contract to be able to offer extra tokens (rewards) as thank you payments to people who are willing to stake their tokens for a week, a month or a quarter – so they can earn some passive income (so far the returns have been prety incredible) while they wait for the EDNA DAC to be formed and take over how someone can earn money holding EDNA’s and/or anomalously selling access to their DNA while still retaining ownership rights.
We are about to release a further upgrade to our contract that enables our decentralized autonomous community to take over the project – this is a big deal. We think it’s will serve as a model for how companies are run in the future.
We are not sitting still by any means, but what we need to have happen next is for the market to figure out a fair price for our tokens. This will allow us to expand the lab capacity to production levels, and open our doors to the world.
Anyone who fully understood the problem we’re trying to solve that we just talked about might think “Why not just lock my DNA up in a safe. Then I can give the hard drive only to my doctor or my genetic councilor?” As a huge privacy advocate for the past many years, I can certainly understand why someone would think that way… but there’s a problem. In order for DNA data to advance the science, it has to be compared to other peoples DNA, and often a deep look into medical records and histories also needs to happen. How do you do that and still protect a persons identity so that insurance companies or others who might want to use that data against a person?
The answer for us is clearly EOS. Nothing comes close when it comes to the ability of this platform to scale, and our design needs to scale big. Each of us has about 3 million genetic variants in our cells. To protect your DNA from “the bad guys”, we tumble those 3 million records with the records of thousands of other people, just like a privacy coin, but hundreds of times more tumbled. Most importantly, this protects you. It also allows the data to be stored in the clear where our code can make use of it.
How we go about this is a long involved discussion, but to simplify it, we can form “pools” of genetic variations that can notify your wallet “Hey, some of your data just got placed into pool #hrsfrf446.”
Users can then message over to that pool and start sharing information about themselves. Eventually members of the pool will figure out “We all have green eyes!” or whatever the variant might influence. This is a very new way to approach genetic research. Working from the data as a staring place, and moving toward the disease.
My background is in big data analysis and design and I believe we have a better way to solve the problem of what’s in our DNA.
Today it works exactly the opposite. Large funding sources give grants to researchers to work on a specific disease hoping to get a drug they can sell in the end. Our system lets us learn what in the DNA first, then if there is a profit to be made the DNA owners will gt a fair share, and there are billions upon billions of dollars there to be made. To make this work we are going to need a giant number of transactions, so EOS is vital since no one has a gas tank big enough to drive us there or the highway wide enough. Side chains will most definitely be needed here, and even in the first baby-days of EOS amazing products like Boid are on the way to market.
I’m quite certain we are on the right platform. There is simply no way we could build this securely and affordable without EOS.
99% of biotechnology is information technology. Today nearly all of the laboratory work being done with DNA is handled by robots called pipetteing robots. They do the job more accurately and faster than humans and they don’t get tired and they don’t make mistakes (under the watchful eye of a good scientist of course). That said, nearly everything being done with genetics is being done with data. If we go back and agree that information is power, then the blockchain is power that can be shared, and be kept private all at the same time. There’s a glimpse of the vision: Your data is yours. You retain the right to control and profit from it, but it can be shared to benefit of humanity at the same time without compromising your identity. In my opinion, it’s a perfect match.
Use of the blockchain also insures the financial and organizational aspects of EDNA are fair and transparent. This we believe is critical to companies wanting to have a future – though it has not always been so.
That is a great question. EDNA (the company) in the end brings only an opportunity to the community. EDNA (the DAC) is the real prize. Our business model is to hand over to the DAC 80.5% of the funding we raise, as soon enough people join the DAC to insure it is diversified enough and ready to assume control of the project. The other 19.5% is there to give EDNA the company the ability to scale up enough to provide a secure sequencing service to the the community. At that point, EDNA (the company) becomes nothing more than a vendor that provides a service to the community for as long as the community decides it’s doing a good job. If the sequencing service does a bad job, they are free to tell EDNA to “get lost” and hire or even create a new sequencing vendor to take EDNA’s place. I think the approach we’ve designed is new. Since when have you ever heard of a company that starts up, then tells it’s customers “Here’s 80% of the money you spent to get us going, now you need to watch over how good a job we do and how we spend that money. You’re in control now. We work for you – and we’re not just saying that. It’s true.”
We really hope this model can work, and even serve to make the world a better more fair place to live in. Corporations do not have social conciseness. As a matter of fact, if you study corporate law; If corporations were to suddenly start acting like they care more about humanity or the environment than their bottom line, their shareholders can sue them, and the shareholders will win.
When EDNA is successful, we believe it opens up a better way for everyone, not just people who care about DNA or crypto. It opens up a better way to live. A few times I’ve spoken like this to people who run in much more powerful circles than I do. Sometimes they’ve said things to me like “You need to hire a better security force right now.” and “Greg, you have to disappear! Get a new identity and everything to protect yourself. I can help you.” My response is simple. I’m not worried, I used to be, but I’m not now. The concept of EDNA is out there on the web. I hold no patents on this, and there’s not much held back that a good programmer couldn’t figure out with a little bit of time and some hard work. So if the bad people kill me, or convince the world I killed myself, they win absolutely nothing. It’s too late. The game is over, and we won before we even really got started. People know about this idea. You can’t kill an idea.
This will sound corny. It’s maybe even a little embarrassing to say, but EDNA is a mother. We’ve born a project, and we hope it will grown up strong, and eventually lead us all to a better place. Like any mother we want our child to do great things in the world, because we believe it will, and like any mother, it’s not our actions or lives that are important. We only want to grow old in our rocking chair, beaming with pride while we ask our closest friends “Did you hear what the EDNA DAC did today?”
Anyone who might say something like that has no understanding of what the project is, and little understanding of modern DNA sequencing technology. I was talking with a reporter not long ago who kept insisting EDNA was doomed to fail because there was no PhD on staff.
A decade ago you’d need a room full of scientists to get a full human genome sequenced. They would have to spend weeks effectively cloning sections of your DNA growing a whole bunch more of just one little section of your genome, they would have to run that piece over and over though the sequencer to make sure the errors were covered up in good data, and they’d have to repeat the whole process over and over for each little bit of the billions of letters in your DNA. This is why just a bit over 10 years ago it would cost you over 10 million dollars to get your full DNA sequence on a disk drive.
Today you can have the same exact thing for less than 1 thousand. Think about that a second, Could you buy a thousand dollar car? How about a 10 million dollar car? Would 23&me have any customers at all if the cost was 10 million per user? The leap forward in the science and subsequent price drop is due to advances in the sequencing machines. Today you don’t need a room full of scientists to run DNA. Any high school student can be taught to do it in much less than a day. The bench or “wet work”; the time you have to spend working on the liquid before feeding the machine is about 10 minutes of “mixing a cocktail” and done – into the machine and walk away. They even have robots now that do this work, and do it well.
Why would I need to pay a PhD to turn on a robot?
EDNA won’t be doing research in the classical sense. What we are planning is to add value to the data our members own by creating something akin to a library card catalog (if anyone reading this can remember what those were). This will allow researchers to easily hunt up the genomes they are interested in studying. Our index will be a bit more extensive than “by author” and “by subject”… As the data is fed into the system we will be creating a highly detailed cross-reference and as someone with nearly 2 decades working in database technology, I can assure you, I’m the right person for this job. So again, how is the current team lacking?
The truth is, we have all the expertise we need at present. Should that change in the future, the DAC has “built in the contract” abilities to acquire talent and other services it might need from sources inside or outside the membership.
The National Center for Biological Information (NCBI) maintains a database where researchers and scientist are picking apart what DNA does in the body. Anyone can go and have a look – and they actually have a pretty easy to use web interface (even for a lay person). What you’ll find there is 49,800 and some odd, genetic variations science knows that can cause or do cause disease in humans.
The FDA allows consumers of genetic testing to know about 10 of these. 10 out of nearly 50-thousand. They even bragged about it in a few recent press releases.
What I find most disturbing is the sub-title on the second press release. There is no other way to interpret that statement other than..
“We know – but you don’t get to.”
When you take into account that the FDA is the only US Regulatory Agency allowed to accept money from the people it has been put there to regulate (over 1/3 of the money they get for testing drugs comes directly from the people making the drugs) …it shouldn’t take you long to connect these dots, and see why a drug company might want to restrict your access to genetic data – now that genetic code can be changed using CRISPR and other emerging technologies, who would want to pay for and take a whole lifetime of drugs to treat a disease, when you could just change your DNA and be done with it?
To answer this I need to get a little technical, maybe another metaphor in a minute can help. When a EDNA token holder redeems their tokens for DNA sequencing and placement on the blockchain. They order a collection kit from a different company (not EDNA). The kit is shipped to their home, and they use it (spit in it), write their public key on it and send it to us. EDNA never knows who sent this, or anything about this person except that DNA data goes in that wallet. That sounds really good. Except it’s not the whole problem. DNA is someones identity, so this system hasn’t protected a person 100% just yet.
To understand how DNA is actually identity you need to know a bit about how forensic labs and databases work. Inside human DNA are some areas that are called Short Tandem Repeats or STR’s for short. These form a pattern inside DNA. When a crime lab wants to match some DNA from a crime scene with DNA stored in their database. They match 20 of these areas. If 20 out of 20 are a perfect match that’s the person who did the crime. If the lab finds no matches in their database (The CODIS Database in the US) The detectives might go collect DNA from anyone who’s a suspect, and check those people for matches in the database.
EDNA has invented a way to scramble the data so there is no way (besides the private key) to say any single repeat belongs with another repeat. This means it’s impossible to to point at the blockchain data and say “That is person x’s data.” it just can’t be done. The EDNA algorithm is designed to scramble the DNA of 5,000 people together before going on chain. This means we’ve created a puzzle with 30 billion pieces, but it’s harder to solve than any puzzle you’ve ever tried. All of the pieces are square – there are no shapes that can be used to lock any two pieces together. There is no picture on the puzzle. Pieces only have one of 4 colors on them to tell them apart (A, C, T or G in DNA “colors”) Lastly, there are 3 million to the 5,000th power different ways to put the puzzle together and it would look right, but only exactly one way is correct, and there is no picture on the box the puzzle came in. In order to “prove you did the puzzle right”, you’d have to have already have had all 5,000 people sequenced and their data in your database, and if that were true, what on earth would make you want to do the puzzle?
I know that was a long reply. But this is what we believe people need to understand. “How protected am I?” Because EDNA never knows the identity of the DNA owner (just the public key), this data is useless to researchers, so it’s pointless for us to try and sell it. That will keep us honest – you don’t have to trust us, as long as we never know your identity, and we will never ask. This is not a perfectly private system, but we’re pretty sure it is as good as it can possibly get until everyone can have a DNA sequencing lab in their kitchen.
You first need to understand where DNA information is at (developmentally) to understand. The truth is, published science has well mapped about 1.5% of what our DNA does in the body. The rest isn’t a total mystery, but it close. I say published science because I’m in no position to say what some group of government or military-funded projects may have discovered in some remote underground lab, but for our discussion 98.5% of what DNA does is unknown. The 1.5% we do know about contains huge changes for the world and even more so when you take into account advancing technologies like CRISPR that allow us to edit our genetic code. Accirding to the NCBI public database, over 49,800 genetic variants are known to make us sick or even kill us, CRISPR is changing all that.
Companies and governments want your DNA for probably many reasons. The one that bothers me the most, is as the genome is fully understood, and we bypass evolution and luck and take control of what’s in our DNA, the entire game on earth is changed, likely forever. They are gathering that data so they can be (or remain) in control of us “Regular Joe’s”, or they see massive profits on possible in coming days.
Currently in the research market your genome is worth about $350.00 each time it’s sold to a project. A company might sell it tens or even hundreds of times. They can even get you to pay for a part of what it costs to turn it to digital information, so where’s the downside for them here? They are building up a massive amount of power and control over you, and you’re helping pay for their acquisition. Unfortunately for you, all you get to know is how much Neanderthal or Viking you are. Pretty useless when you consider what they get out of the deal.
The terms of service for pretty much all the sequencing services out there are very one-sided. If I have any advise to give worth anything, it would be to carefully read those terms of service and think long and hard about what your giving up and what your getting in the so called deals they are offering.
The EDNA DAC will allow people to control their own genetic data and more importantly genetic futures. It’s rather challenging for governments and organizations to restrict and control information once it’s on the blockchain. That one’s important, but that’s all I’m saying for now. Also important is the ability to secure your personal genetic information, and be in control of its monetization.
EDNA has the potential to empower people in ways that are not even thought of yet, but if you just look at today and the alternative offerings out there, EDNA is pro-human, pro-property and pro-privacy, while all the others are complete opposites.
We think the choices is pretty clear.
We are currently on target to open the DAC for membership in mid-late November 2018