EDNA.Life’s Greg Simpson tells Blockleaders the truth about hereditary websites, the future of DNA modification, and why the authorities don’t want you to know the secrets locked inside your DNA profile.
If you carried a higher than usual genetic risk of contracting a disease, or of suffering a heart attack, you’d want to know, right? You might feel inspired to take stock and re-examine how you are leading your life. In many cases, a simple dietary change, or an altered exercise regime could be the difference between a long and happy life, or early death. Maybe you’d cut down on alcohol, finally give up those cigarettes, or scratch running a marathon from your bucket list.
Or perhaps you’d rather not know. You’d prefer not to meddle, take each day as it comes and live life in the present tense.
For Greg Simpson, founder of EDNA.Life it’s a matter of choice because, at the moment, the Federal Drugs Agency in the United States forbids you from learning the truth about your genes. “The FDA has declined to let us know a great deal of information that is available to us in our DNA. Just to give you some perspective on how little we are allowed to learn, here are some numbers. There are around 3 million genetic variants – these are the parts of our genes that make us different from each other – 49,000 of which are known to be pathogenic, meaning they can or do cause disease. Out of those 49,000 known pathogenic genetic variants, the FDA allows direct consumer reporting to tell us about 10 of them. Is there a legitimate reason for this? Are they afraid that we will freak out and jump off a bridge if we are told there is something wrong with us?
“It’s like saying that if we detect cancer in your body, we’re not going to tell you. How is it different? Maybe I have a weak heart. Maybe I’m one of those guys who’s going to drop dead at 35 if I exercise too strenuously. Well, guess what I’m not going to do if I know that? I’m not going to go and run a marathon! So, do you protect someone’s emotional health, or let them confront the truth and modify their behaviour? Because most of these things can be modified with a change in behaviour if you have that knowledge early enough.”
Greg has his own theory about why the FDA doesn’t want you to know about your own genes. “Major corporations are the ones with the power. And the main reason for this has been the expense to get the data. Ten years ago, you needed a room of scientists working 24/7 for months to run a DNA profile. Today you can do it in your kitchen. You just need a laptop and a MiniION from a company called Oxford Nanapore in London. I’m telling you, I could teach a bartender to do it. If he can mix a good cocktail, I can teach him to do the wet work need to do to fill the device. Then you plug the device into the laptop, go away for 48 hours and you’re left with a two-Gigabyte genome.
“Corporate law has no social conscience. Think about it. If a company were to decide that it was not going to poison the environment, and would lose money as a result, it would be perfectly legal for shareholders to sue them. Human life doesn’t factor into corporate law. Corporate law is built around one directive: earn profit for the shareholders. And that’s a mistake.”
Of course, DNA mapping has become commonplace. Services such as Ancestry.com and 23andMe offer DNA testing at a bargain price but, for the thousands of people who have paid for these services in the hope of discovering if the family lore about their ancestry is true, the fine print of these transactions makes for sinister reading.
“The land grab is on. Companies like 23andMe and Ancestry.com are charging $59 to their customers to map their genomes, which costs those companies just under $1000. They charge this small sum because they know that most people won’t read their terms of service, which basically requires you give up ownership rights of this data. 23andMe and Ancestry.com can then sell your genetic information to pharmaceutical companies, biological weapons manufacturers and governments – the top three buyers. They sell it for $350 or so at a time, but they can sell your information dozens of time per year. And you’re paying them to do this!”
This is where EDNA enters our story. The platform that Greg has created aims to “end human suffering caused by genetic disease, enhance longevity and to ensure the genetic information is controlled by the people who that information impacts.” Using the EOS blockchain to securely store the EDNA community’s DNA, the hope is that those who stake their EDNA tokens (and their DNA) on the platform will benefit from the monetization of their genes. And once that information is yours to own, there is nothing to stop you from learning more about who you are and protecting your identity. EDNA plans to build a decentralized autonomous community that will take control of the project once enough people have signed up. It is a vision of absolute democracy and decentralisation.
Greg believes that we should own our own DNA data and benefit from its use. Pharmaceutical companies, governments and biological weapons manufacturers want this information, and many of us are, in most cases unwittingly, giving it to them by donating samples to genealogy companies. But are these concerns symptomatic of the modern paranoid conspiracy theory wave that, amongst other things, has lead to an alarming drop in the numbers of parents vaccinating their children against serious, preventable childhood diseases? Well, yes, sort of. I put it to Greg that some people may pigeonhole him as a paranoid crank.
“It’s a wake-up call. You can call me paranoid, but that just means you are not willing to face facts. We have to watch what our governments are doing.”
And Greg, let’s be clear, is not a medical professional, nor is he a reformed pharmaceutical bigwig. However, his experience of data systems, honed at Fortune 500 companies such as Oracle has given him, he believes, the skills required to allow people to manage their own genetic profile through the blockchain. Greg explains how this will work:
“We pull out the three million variants from the standard. We assign a unique ID to each variant and put that in your wallet. We then pull out five thousand other people. We tumble these files – being the three million variants of each of the 5000 people – using similar techniques that are employed by [privacy coins] Zcash and Monero. Now they are ready to go on the blockchain. Nobody can look at this information on the blockchain and say – look, there’s Sally’s DNA. It’s completely secure.”
But what makes a successful database analyst give up the day job and put his every resource into creating a platform to solve a problem the majority of people don’t even know exists?
“I spent decades making money for corporations. I earned a good living myself. For the past two years I have foregone any financial gain. I’m finally doing something good for the world. I’m in my mid-fifties. I’ve had a good life. I’ve gotten to travel, I’ve had opportunities that lots of people don’t have. Most people will spit in the cup and hand it over to 23andMe and think that they got a good deal. Because I’m aware and awake, I can’t walk away from this. A lot of people have said, ‘Greg, they’re going to kill you’. I chuckle, because it’s too late. We’ve already won. The information is out. I don’t have any secrets, I’m not trying to get a patent on this. EDNA has already won the war. It’s not about money, it’s bigger than that. They can come shoot me, or tell everyone I jumped off a bridge but it won’t stop it.”
Greg walked away from a successful career to do something that he is passionate about, and while many of us admire that in a person, it can be difficult to convince those closer to home.
“My friends worry about me. They ask am I eating okay. They say I look tired. But I’m one person. How many people have died because of Big Pharma? How many people have died because they were told they had to take a drug for the rest of their lives, instead of being given the opportunity to edit their DNA so that they don’t have the condition? This is bigger than Greg.”
CRISPR is the technology that is used to edit DNA. It’s a technology that is becoming more efficient every day. However, the difficult part is re-integrating this modified DNA back into the person so that it takes over and reproduces effectively. And, in case you’re wondering, current CRISPR technologists do not (as far as anyone knows) edit DNA so that it alters the DNA of future generations but you can see how this could become a slippery slope. Visions of immortal Silicon Valley billionaires with genetically engineered superhuman powers automatically pop into my mind.
But the DNA landscape is littered with moral confusion. Try this: the FDA forbids you from knowing about those potentially pathogenic genetic differentials but there doesn’t appear to be anything to stop your government, insurer or employer from knowing what your genes have in store for you. This is a world where you know you are about to die because nobody will want to renew your insurance policy.
“One of the terms of service for 23andMe is that you warrant that you are not an insurance company or employer seeking information about someone you insure or employ. The very fact that this term is there, must mean that it is technically possible for an employer or insurance company to access that data. Handing your DNA over to these companies is opening yourself up to potential security risks about your identity, as well as not taking advantage of what you might have in your treasure box.”
The treasure box Greg is referring to is from an illuminating analogy on the EDNA website, where he compares your DNA profile to a treasure box that you own, that is locked, and that you are only allowed know a tiny portion of its contents. What makes Greg so fascinating to listen to is his remarkable gift for explaining these complex notions. After we speak, I read some articles on the EDNA website, and they all read the way Greg speaks. There is no doubt that Greg’s fingerprints (and DNA of course) are all over this project.
1300 people have signed up to place their reservation to have their DNA mapped. Greg is hoping to reach out for some venture capital to get the first 5000 on-chain. He’ll be presenting at the Scaling Blockchain event in San Francisco next month, where his passion for his subject will doubtlessly prick up the ears of the blockchain community. If the ultimate vision of blockchain is a fully decentralised world, where ordinary people can control their data, their money and even their own genes, EDNA.Life and its decentralised community can, with time, be one of its cornerstones.
If you want to delve deeper into the treasure chest, go to EDNA.Life’s website, where Greg explains his project in detail.
Connect with Greg on LinkedIn