I Downloaded My DNA This Week (#GotBitcoin)
I Downloaded My DNA This Week
I took a test a couple years ago as part of a sales pitch for the company I was working at, and recently learned that I could download all the raw data. So I did. I Downloaded My DNA This Week
There’s something surreal about looking at your genetic code itself. When you see even just a part of your genome written out, inside your text editor on your computer, it looks… like software. If you’ve ever seen or worked with code like assembly language, it looks just like that.
And that’s when you realize… we are code. We are programs.. Our bodies, our hardware, are remarkable computers that run incredibly complex code to build and maintain themselves. Our minds, our software, are equally complex, more complex than any computer we’ve invented yet (though quantum computing may change that in the years to come).
Which also means… we can improve. Just as any hardware can be upgraded and any software can be patched, so can we adapt and improve. Today, it’s easiest to improve our minds, but with technologies like CRISPR gene editing, patching and upgrading our hardware programs is no longer science fiction.
What does this all mean for us? It means that we are limitless in our potential, and it equally means that we have no excuses for not improving ourselves. Our very corporeal existence is defined by code, written into every cell in our bodies, and code is meant to be patched, upgraded, and improved.
Take heart, then, when faced with a new subject, topic, or idea to learn. Instead of lamenting it or wishing it were easier, revel in the fact that you are meant to be constantly improving and upgrading yourself. Take joy that you can, that the opportunity exists for you to advance yourself, and seize that advantage with all your might. You are a learning machine at every level.
Updated: 5-20-2022
It’s Too Late To Protect Your Genetic Privacy. The Math Explaining Why.
‘CentiMorgans’ measure how much DNA we share with others, often unlocking long-unsolved mysteries.
Earlier this year, the police in Eugene, Ore., said they had identified a serial killer who committed three murders from 1986 to 1988. The man, John Charles Bolsinger, had escaped attention so thoroughly for three decades because he had killed himself in 1988.
Investigators had stored DNA from the crimes, and recently plugged it into a genealogy database, zeroing in on Bolsinger by first finding his distant cousins. It is the latest in a growing string of cold cases solved by law enforcement using techniques developed by genealogy hobbyists.
Take a DNA sample, identify a second cousin here, a third cousin there, and then use public records to reconstruct a killer’s family tree.
If you’re concerned about the privacy implications of this, you might think, “Well, I would never submit my DNA to one of those sites.”
Sounds reasonable? In fact, it is far too late to completely protect your genetic privacy via personal abstention. A brief exploration into the mathematics of genetics explains why it has become possible to track down killers—but also anyone—through distant relatives.
“If somebody wanted to use the skills of forensic genealogists to try to track you down through a third cousin, they could,” said Jennifer King, a privacy scholar at Stanford University.
To understand how exposed your genes potentially are, consider an obscure unit of measurement—the centiMorgan, or cM. (It is named for Thomas Hunt Morgan, whose experiments on fruit flies led to the Nobel Prize in 1933 for showing how chromosomes are inherited.)
It lies at the heart of all the stories you read nowadays of people discovering unknown links through their DNA and genealogical research.
It gauges genetic distance, specifically the length of identical segments of DNA that two people share due to descent from a common ancestor.
In general, people have about 6,800 cMs. A child inherits half their DNA—one set of chromosomes—from each biological parent. So child and parent will have around 3,400 cMs of DNA that match.
(Because of slightly different methodologies, the major testing companies report slightly different numbers.)
For every “degree of relatedness,” the length of shared cMs halves. An uncle or grandparent, one degree removed from parents, shares half as much DNA on average.
That is 25%, or about 1,700 cMs. One more degree removed: A first cousin or great-grandparent shares half again, or around 850 cMs. And so on.
Even with all these halvings, very distant relatives out to fifth cousins share so much identical DNA that a common ancestor is the only possible source.
“I think most Americans don’t realize this,” said Libby Copeland, author of “The Lost Family: How DNA Testing Is Upending Who We Are.” “It’s a profound shift.”
It is easy to find distant relatives, because a typical individual has so many: according to various methods, around 200 third cousins, upward of 1,000 fourth cousins and anywhere from 5,000 to 15,000 fifth cousins.
This isn’t just relevant for crime scenes. There is no such thing anymore as truly anonymous sperm or egg donors, unknown fathers, or closed adoptions. They are all examples of scenarios where secrets involving parentage are easily solved by the centiMorgans. No court ruling or confidentiality agreement can erase this science.
An adopted child who doesn’t know his biological parent still shares 3,400 cMs with that person, and hundreds of centiMorgans with numerous cousins from that parent’s family.
The child, or generations from now that child’s descendants, could upload their DNA to a database and by looking for matches with others who have uploaded theirs, discover some of those distant cousins.
That would be enough to reconstruct his family tree and identify the parent, even though the parent never uploaded their DNA—the exact same process used to identify DNA in cold cases.
‘If somebody wanted to use the skills of forensic genealogists to try to track you down through a third cousin, they could.’
— Jennifer King, a privacy scholar at Stanford University
Katie Hasson, associate director of the Center for Genetics and Society, which advocates for protections against genetic information being abused, says that only collective action—not individual precaution—can address the privacy concerns this creates.
“Right now, forensic genealogy is very labor intensive and new, and being used for very serious crimes and cold cases,” said Ms. Hasson. “The likelihood it will be confined to that, without actual enforceable restrictions and regulations, is slim.”
The scale of testing is enormous: around 21 million samples on AncestryDNA, 12 million at 23andMe, 5.6 million at MyHeritage and 1.7 million at FamilyTreeDNA, according to data from the International Society of Genetic Genealogy.
Legal protection is limited. The 2008 Genetic Information Nondiscrimination Act, bars genetic information being used for decisions about health insurance and employment.
But it never anticipated the extent of today’s testing, the types of cutting-edge medical research under way, or what happens, say, if a company with a giant genetic database collapsed. What happens if the data of millions of people (with cMs matching thousands of distant cousins each) is sold at bankruptcy auction?
In my own extended family, I corresponded with a distant cousin who discovered one great-great-grandfather in her family tree wasn’t biologically related.
By identifying distant cousins with whom she shared DNA, she found that she and these new cousins were all descended from a different man: a soldier who spent a month in the same county as her great-great-grandmother in 1862 during the Civil War, about nine months before a child was born. (She asked I not share names. Even 160 years later, some secrets are awkward.)
There is really only one thing that this Civil War soldier, the woman he briefly met in 1862, and Eugene, Ore.’s serial killer from the 1980s all have in common: They never submitted their DNA to a testing site. It didn’t matter. Their centiMorgans are everywhere.
Updated: 9-5-2024
Stop Giving Your DNA Data Away For Free To 23andMe, Says Genomes.io CEO
Genomes.io CEO Aldo de Pape tells The Agenda podcast that customers should be wary about giving away their DNA data for free, as its true value is astronomical.
What is the value of DNA data? According to genetic testing companies like 23andMe and Ancestry.com, it’s worth much more than might be expected.
The global market size of the DNA sequencing industry was estimated to be over $10 billion in 2023, while leading consumer provider 23andMe took in nearly $300 million in revenue.
However, what most people don’t realize is that the real core business model of companies like 23andMe is not the sale of personal DNA testing kits — it’s the sale of their customers’ genetic data itself.
These companies keep and sell their users’ genomic profiles to pharmaceutical companies and other researchers, while the users themselves get none of that revenue, nor any say in whether they want their data sold in the first place.
According to Aldo de Pape, co-founder and CEO of Genomes.io — a privacy-focused alternative to 23andMe — there is a better way to operate that both respects users’ privacy and rewards them when their data is used for research.
On Episode 44 of The Agenda podcast, hosts Jonathan DeYoung and Ray Salmond chat with de Pape to learn more about the true value of genetic data, why many genomics companies are not as innocent as they seem, and how Web3 and blockchains may offer an alternative approach.
The Value of DNA Data And The Looming Hacking Threats
According to de Pape, one core issue is that the average person simply doesn’t understand how valuable their genomic data is and, therefore, is willing to give it away to companies for next to nothing.
That average user might just want to know their ancestral background or “whether [they’re] making the right dietary decisions.”
However, these companies make a killing by then turning around and selling their users’ data to researchers, often pharmaceutical companies.
“They take your data to a lab, and in exchange for your $150 or $200, you get the report. But at the same time, you’ve paid more than that $200. You’ve also paid with your data because they now have the commercial rights over your data and can sell it to the highest bidder.”
But companies selling your data isn’t the only concern — there is also the threat of hacks and data leaks, like what happened to 23andMe in 2023 and MyHeritage in 2018. The United States government has cracked down on similar companies that allegedly failed to adequately protect customer data.
De Pape also pointed out that with the proliferation and increasing power of artificial intelligence, it will soon be theoretically possible for a bad actor to steal a treasure trove of DNA data and design a powerful bioweapon.
“Cybersecurity doesn’t only mean like, ‘Listen, are you going to knock on my personal door?’ It also means we need to stand up for the information of all of us.”
Encrypted DNA Vaults And Genetics-To-Earn
Genomes.io attempts to solve this issue through what it calls “vaults,” which contain users’ genetic sequencing results and are end-to-end (E2E) encrypted so that only the vault’s private key holder has access.
This means that if the company is ever hacked or sold to someone with less privacy-centric values, whoever gains access to the vaults will only see a garbled mess of encrypted text.
Because the vaults are E2E encrypted, Genomes.io cannot sell a user’s data without their consent. And when researchers do come to the company with requests to conduct a study, those users who consent to their DNA being used receive a cut of the revenue in the form of GENOME, the project’s native token.
As de Pape Explained:
“If your data is queried, then the $50 per exome that went now into the pockets of 23andMe never went back to the individuals who paid to have their data sequenced. […] We want to make sure that [our users] receive loads of information on a health level as to who they are, but also the proper financial compensation they deserve for the sales of their data.”
To hear more from de Pape’s conversation with The Agenda, listen to the full episode on Cointelegraph’s Podcasts page, Apple Podcasts or Spotify. And don’t forget to check out Cointelegraph’s full lineup of other shows!
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