EDNA was the first token I ever received on EOS, and the first application that really blew my mind. When I first received the tokens, I was told by my doctor that I had to take a genetic test for the MTHFR mutation. This DNA segment deals with how your body processes vitamin B, which is key to your body’s ability to transform food into energy. It was part of a thorough investigation by my holistic doctor into a lifelong struggle with depression. After paying $100 and getting the commercial test, then sending the raw data file to my doctor, we verified that I did indeed have that marker, and now, even though I’m middle aged, I’m finally getting B vitamins in a form my body can absorb. I have more energy and a generally less dark outlook on life.
My doctor could have easily requested the genetic test from the hospital, but she warned me that that was not a good idea, as my insurance company would have access to the results. If the genetic test revealed any other markers for diseases I could lose my insurance as these would be categorized as pre-existing conditions. I first got health insurance at age 38 through my wife’s job, and now, less than five years later, I was jeopardizing it. In order to complete the test, we had to use a commercial company so we could have access to the results first. We downloaded the raw data file and looked through it on the computer in her office. A further layer of protection was using a fake name when I submitted the test. The commercial companies don’t ask for any kind of KYC verification so this a reasonable measure to protect your identity, but of course using your email history or IP scanning it would be pretty easy to discover your real name.
If this sounds like the typical paranoid crypto mindset, believe me it isn’t. In her many years of experience, my doctor had many examples of patients that had been denied coverage after an insurance company saw their genetic test, this had even happened in her own family. The Affordable Care Act had done away with pre-existing conditions, but that was one of the components the Trump administration was able to dismantle.
I wondered what a genetic test would reveal about my 2 year old son. Perhaps we could get some early insight to learn how best to support his growth. I put the question to my doctor and she advised against it.
“It’s not worth the risk,” she said. “You could easily get the sample, then create a fake name and get the results just like we did with yours, but it isn’t worth the risk.”
“Isn’t that information confidential?” I asked.
“No, the waiver you sign gives them ownership of your genetic code,” she said. “They sell DNA profiles to drug companies already, there’s nothing to stop them from selling profiles to insurance companies in the future. There is no way to know what they’ll do. They could disclose your son’s profile in 20 years and he could lose his insurance while he’s in college. It’s a risk for you but a way bigger risk for a 2 year old.”
Every existing commercial genetic test requires you to waive the right to your own genetic code, and your DNA is packaged and resold to drug companies. You can’t trust them. They own your genetic information and insurance companies seem like an enormous potential market.
23 and me just announced their partnership with Glaxo Smith-Cline.
Normally, you would expect to get reimbursed for participating in a medical or scientific study. In this case 23andMe customers pay and are included without their permission.
Peter Pitts, president of the Center for Medicine in the Public Interest, said the companies should pay the 23andMe customers whose DNA is used in any research.
“Are they going to offer rebates to people who opt in so their customers aren’t paying for the privilege of 23andMe working with a for-profit company in a for-profit research project?” he asked.
“It’s one thing for NIH (the National institutes of Health) to ask people to donate their genome sequences for the higher good,” Pitts told NBC News.
“But when two for-profit companies enter into an agreement where the jewel in the crown is your gene sequence and you are actually paying for the privilege of participating, I think that’s upside-down.”
Giant for-profit corporations are mobilizing and collaborating to profit from the information that defines you are, the biological code that creates you. Is there anything more personal than your DNA, the very basis of who you are? It is not enough that social media giants have made billions of dollars by examining your mind and personality, now they are coming for your body, for your very biology. After this there is nothing left to mine. Unless they can make some kind of deal to probe you in the afterlife.
Who has the rights to the mail you throw in the garbage after it reaches the landfill? Who has the rights to your receipt after you go to the grocery store? Who has the rights to your internet search history when you are using inflight wireless? Who has the rights to the sweat left on the treadmill handle after you leave the gym? In a world where the Roomba company stores maps of your home on their servers for future for-profit collaborations, you’d better start asking yourself crazy questions like these, because eventually someone else will be. Personal data theft for profit is never ever going to end unless we arm ourselves with new technology and stop it.
Big pharma is responsible for the biggest health crisis in American history, and have not been held accountable. Death by drug overdose is at an all-time high, and it’s not because of illicit drugs, it’s because of opioid pills, one of the pharma companies’ most profitable products. When they saw an opportunity to create synthetic opioids, which are cheaper to produce and more powerful than organic opioids, they took it and created a drug called Fentanyl. Fentanyl is 100 times more potent than morphine and equally more addicting. These companies have restarted the heroin crisis of the 60’s and 70’s with such force that the average American lifespan has decreased by around 5 years. President Trump has blamed immigrants for the Fentanyl epidemic but this is one product that is distinctly and tragically American. This is where big pharma research has lead us. And if you are a 23andMe customer, you’ve given them your genetic code to work with for their next big project. Probably something cheaper, more addictive, more murderous, and even more profitable than Fentanyl. When will these companies be held accountable?
Don’t we deserve better? Don’t we deserve access to our own genetic profiles without risk, especially if it means that we can have new insight into how to stay healthy? I for one, wish I had been taking B vitamins that my body could absorb my entire life. If we don’t own this, what do we own? I should have the insight to better care for my son without worrying that he could be denied insurance for life, or that his genetic code could be sold to a giant pharmaceutical company to be used to better refine their super heroin.
Greg Simpson has set out to change this. A complete genetic profile can be worth $70,000. Imagine if a poor kid in a developing country could control their DNA and sell their information themselves? Imagine a marketplace where individuals could review proposals and choose a medical study they believed in. What if you could interview people conducting a study to discover their goals before you decided to donate or sell your genetic information? Or if you could just have the option to review your genetic code at anytime, privately and securely with your doctor, without worrying about who else can see it? That’s what EDNA has set out to do by supplying genetic testing with the results secured on the blockchain. It was one of the first ideas on EOS and still the best. I’ve had the privilege of getting to know Greg over the past few months and Sharif, the CEO of EOS Dublin, gave me some time to work on improving the edna.life website. This is an idea whose time has come, and I’m proud to have contributed a little to spreading the word. Check it out here:
We’re experiencing a crypto-winter, but as the giddy, amped-up voices quiet down, the originals are still here. Those who are driven not by hype, moon and lambos, but by the need to make a difference, those who see injustice and search constantly for the tools to make it right. People like Greg, Sharif, Fuzzy, waba.network and many others worldwide that make EOS more than a technology project or a cash grab. This is what will define 2019.
-Isaac
