Your Genome Is Pretty Worthless
By: Sam Westreich
Tags: Health, Genetics, Biology, Technology, Science

Let’s imagine that I’ve stolen your genome.

I’m a hacker — a black hat, someone who commits crimes using my skills on a computer. I earn my clandestine living by breaking into “secure” sites and stealing data. I try to get my hands on credit card numbers, Social Security numbers, and other bits of personally identifying information that I can either use to scam money or that I can bundle up and sell to another degenerate who plans to use it for ill purposes.

I recently broke into a hospital. Not physically with a crowbar; I broke into their server using some false credentials I gained through social engineering. I grabbed a big file before I got booted off the server, figuring that a file this big had to contain some juicy information.

It turns out that I stole genomes — a lot of genomes. I’ve got the entire DNA sequence of more than a thousand people.

One of those genomes I stole belongs to you.

That genome got stored on the hospital’s server. Now that I’ve hacked in, I’ve got a copy sitting on my home computer.

Why’s your genome at a hospital? Perhaps you went in for a checkup and your doctor noticed a suspicious lump or a strangely shaped mole. He decided to take a biopsy, a tiny sample of the area taken through a pinprick with a hollow needle. He sent this biopsy down to the hospital’s lab, where they sequenced the DNA in the sample to check whether there are signs of cancer in your genome. That genome got stored on the hospital’s server. Now that I’ve hacked in, I’ve got a copy sitting on my home computer.

How much damage can I do to you with the genome I’ve stolen?

As it turns out, not that much. The idea of using someone’s genome against them sounds scary, but it just doesn’t pan out too well in real life.

Good Luck Trying to Get a Bank Loan With a Genome

For those hackers who steal our identities and force us to constantly change bank passwords and freeze our credit accounts, a few bits of information are worth far more than their weight in gold:

Social Security numbers. With an SSN, I can impersonate you, apply for credit cards, take out loans, buy 55-gallon drums of lube from Amazon, and use your identity for my own purposes. Credit card numbers. Why bother applying for a credit card with a stolen SSN when I can just steal the credit card information directly? I can use that credit card info to rack up online purchases, which I can resell for cold, hard cash. Email/password combinations. The email and password you used for your PopCap games account (proud makers of Bejeweled) might not seem that valuable, but what if you used that same email and password combination for your Amazon account? Most people reuse the same handful of passwords for ease of memory. Even if only a quarter of the passwords from PopCap work at Amazon, that’s still a lot of compromised accounts that I can use. And that’s more money I can steal and more lube I can buy. Protected health information. Since medical health records contain important information like a SSN, a date of birth, names, and billing information, they’re a great way for a hacker to impersonate someone for making fraudulent purchases. Some hackers even file fraudulent medical claims for reimbursement. Since people usually don’t check their medical records as often as their credit card statements, protected health information can be worth a lot to hackers.

A genome isn’t connected to financial information and isn’t even connected to a method of getting that financial information.

What do all of these bits of data have in common? They all focus on getting to a financial reward for the hacker — after all, the goal of most black hats is to get rich. But a genome isn’t connected to financial information and isn’t even connected to a method of getting that financial information. I can’t (at least not as of today) use my genome as a way to verify my identity. A bouncer at a bar can’t scan my genome to confirm that I’m over the legal drinking age. I can’t deposit a cheek swab at an airport security checkpoint to avoid the long lines or intrusive body scanners. I can’t stroll into my bank, hand over a tube of spit, and request a half-million-dollar home loan.

In order for any of those scenarios to work, we’d need a national database of genomes — a government tool that links your genome to your credit history, to your taxpayer profile, to your banking information. A national database like that doesn’t exist.

I could plaster my entire genome on a billboard tomorrow, and I wouldn’t receive any blowback from it. Unlike when the CEO of LifeLock put his Social Security number on all their advertising, my genome sequence isn’t connected to any other data.

At least, not yet.

GINA, Genomes, and Getting Insurance

One of the biggest concerns that I hear about genetic testing comes from privacy advocates who fear it will be used to hit them in one specific area: insurance costs.

It does seem like a nightmare scenario. If you’re healthy but a genetic test suggests you’re at a high risk to develop a costly disease in the future, insurance companies could jack up your premiums, trying to weasel out of paying for your future disease. Compared with many of the corporate horror stories we read in the news, and considering our already-broken health care system, it sounds disturbingly likely.

Thankfully, it’s illegal at the present due to GINA.

If you take a genetic test… neither your employer nor your health insurance provider may act on that information.

No, I’m not talking about that weird girl from fourth grade who always talked about horses and smelled like asparagus. GINA stands for the Genetic Information Nondiscrimination Act of 2008, a bill passed by Congress that protects people from discrimination based on their genetics.

GINA has two parts that protect two big areas of your life from discrimination based on your genetics. Part I protects your health insurance, and Part II protects your employment. If you take a genetic test and learn that you’re highly likely to develop Parkinson’s disease, neither your employer nor your health insurance provider may act on that information. You can’t be fired based on genetic test results, and you won’t pay more in insurance.

However, just like putting a raincoat over a horse, GINA can’t cover everything. GINA doesn’t prevent genetic discrimination for other forms of insurance, such as life, auto, disability, or long-term-care insurance. It also doesn’t apply to people in the military, people working for a small company (fewer than 15 employees), or people who receive their insurance through the Veterans Health Administration or Indian Health Service.

Your genome, therefore, doesn’t hold much value to health insurers. They can use it to better guess at how much of a risk premium they have in their insured population, but they can’t use it as an excuse to charge people more for their insurance.

We’re All Lab Rats — Genomes for Research

A couple of startups have made the news recently for combining several buzzwords together into an alphabet soup of a press release. “Big data!” “Genomics!” “Blockchain!” “Crowdsourcing!”

Chief among these startups is Nebula Genomics, which is promising to “put your genome on the blockchain” — because those are definitely words that make sense together (spoiler: no, they really don’t). This startup, backed by George Church, a Harvard geneticist who’s been addressed at times as the “father of modern genetics,” is looking to convince individuals to voluntarily offer their genomes to pharmaceutical companies for research. In exchange, the pharma companies will pay Nebula, which will distribute the profits to the individuals. Why drive for Uber when you could just get money for sharing your genome?

Your genome is relatively worthless without phenotype data.

(And what about blockchain, you ask? Nebula will pay volunteers in their own cryptocurrency, which can presumably be converted back to money. Why not just pay in good old dollars? Probably because they wanted to use an additional buzzword and capture the “double word score” space.)

Of course, there are a few big problems here. They are:

Your genome is relatively worthless without phenotype data — that is, information about all the physical traits you have. What diseases have you endured? What’s your height, weight, blood pressure, cholesterol level? Do you have any conditions like diabetes, irritable bowel syndrome, or others? Without this accompanying phenotype data, your genome can’t be used to predict things and is relatively worthless for pharma companies. Even if you do provide phenotype data, perhaps through a very long and detailed survey, you’re probably relatively healthy. Pharmaceutical companies don’t want to look at healthy people; they want to look at sick people who have diseases they might be able to cure. Your healthy genome isn’t important to them. Sequencing still costs money. Nebula will have to take a pretty significant chunk of any earnings you might receive in order to recoup the costs of sequencing your genome for you. Finally, what’s to stop other companies from doing this themselves? Pharma companies already work very hard to build cohorts of people with specific diseases so they can run clinical trials. It’s much easier to sequence an already-assembled group of people than it is to wait for Nebula to get enough participants who happen to have your disease of interest.

Add all this up (plus the fact that Nebula is paying you in cryptocurrency so they don’t need to be a central bank along with a genome bank), and your genome probably won’t net you very much. Sure, it’s passive income, but you’d do better by filling out Mechanical Turk surveys or handling some TaskRabbit deliveries a few times a month.

What’s the Real Value of a Genome?

In the end, I’d say that most of the value of a genome is sentimental and unique to you. A genome isn’t very valuable as a commodity, aside from the cost it takes to produce it (sequencing costs, not raising-a-child costs). Rather, a genome is valuable to its owner because of the insights it provides.

There’s a reason so many people take genetic tests to figure out their family’s ancestry: It’s interesting! We all want to find out more about ourselves. My relatives have used ancestry tests to further trace out our family tree. That’s information that might not be valuable to others — who else would care about the grand and sprawling Westreich family tree? — but it certainly matters to our clan.

Most of the value of a genome is sentimental and unique to you.

We should still demand privacy and security for our genetic data. While a picture of my beaming face won’t allow someone to steal my identity, I still don’t want to see my smug mug plastered on strange websites without my permission. I know that most people can’t do permanent and significant harm to me with a rogue copy of my genome, but I’d still prefer to keep it under control.

Perhaps someday, we’ll pay for our cyberpunk body augmentations and upgrades by using our genomes as a sort of encryption key to ensure payment, a bit like the “tap your phone” with Apple or Google Pay. If that day comes, we’ll need to protect our genomes so thieves can’t spoof our identities.

But today, there’s little need to be concerned about where your cheek swabs and shed follicles end up. Your genome is, to anyone other than yourself, largely worthless — and that’s a good thing.