Your Imminent Non-Consensual Genetic Profiling

I was recently made aware of an alarming hypothesis about the potential liaisons between personal genotyping services (which are a great idea for Biohackers), the +$3 trillion healthcare industry, big tech, big data, and big government...

So you send a spit sample of your DNA to a firm like 23 and Me and they will provide you with all this useful information not only about your ancestry but also your raw genetic profile data. If you're up for DIYing genetic analysis, you can risk profile yourself for cancer, heart disease, Alzheimer's, and a myriad of other medical conditions that you really might like to avoid. It removes a lot of the guesswork from the project of self-quantification and allows you to narrow in on the Biohacking strategies that might just save your life one day. It's a pretty smart thing to do.

But critics of genotyping say...

Don't give those companies your precious genetic information! They are going to sell it to the healthcare industry and insurance companies! Those heartless, greedy bastards will use your data to profile you! If you're a carrier of some problematic genetic traits (which you may be) they'll use it as an excuse to raise your rates, charge you exorbitant prices, or send you to the back of the line for medical services that you crucially need!

And that would certainly be VERY profitable for both the insurance companies and the genotyping services. Let's say you're paying $300 monthly for your health insurance, yet you have a rare genetic disease that's going to eventually require a $50,000 surgery, even if you eat healthily and exercise. The insurance company is taking a loss on you, a substantial loss. How much would the insurance company be willing to pay for data that might reveal your likelihood of having such a costly disease? A lot.

However, I'm honestly not that worried about your private genetic data being sold like this because...

• In the United States, there are laws in place to prevent this sort of thing, namely the Genetic Information Nondiscrimination Act of 2008. And the European Union has passed similar laws.
• If the genetic profiling firms were selling your private data directly to the healthcare industry that would be tremendously scandalous. Their customers would be rightfully outraged. It would be real corporate malfeasance with serious consequences for their bottom line.
• Politicians are very interventionistic in the healthcare industry. Even in the United States, healthcare is NOT regulated by the invisible hand of the free market as much as it is kicked in the face by the boot of government power. I think if big health care started discriminating against their customers based on their genes that would be instantly scandalized and racialized. It would put any companies or executives involved in the crosshairs of the regulators and armies of angry influential activists.

How you'll be genetically profiled without your permission

23 and Me was founded by the ex-wife of Sergey Brin, the co-founder of Google. They are highly connected to all the major Silicon Valley tech firms and services that you likely use every day. Given the tremendous profit incentive, is it conceivable that 23 and Me is cross-referencing genotyping data with their customers' social media data to build risk profiles for the healthcare industry just based on your digital footprint? 23 and Me encourages you to connect your social media profiles to your genotyping profile and their incomprehensible legal terms of service do give them the liberty to sell your data. I don't know about you, but I've given Silicon Valley probably millions of data points about my preferences and behaviors. You could debate that they know me better than I know myself.

Big tech could easily draw statistical probabilities between the makeup of your digital character and your actual genes. For example...

• If you're 46 years old and you check in at casual dining restaurants a lot you're probably at higher risk for heart disease.
• If you like a lot of video gaming-related pages and you're a single male you're probably at a higher risk for obesity.
• If you use TikTok several hours a day, you're at higher risk for mental health disorders. 

You get the idea. By combining the data of millions of 23 and Me customers with the big data of billions of Google services users they can probably predict someone's genes with a scary degree of accuracy. The genotyping firms could keep your data private and anonymous yet still build a predictive genetic profiling algorithm that could risk profile you for calamitous future health events just based on your search history and favorite apps. If you don't use Google services or social media, well good for you, but if you do that's A LOT of intimate data about yourself that you've given up for them to use to make money.

The corporate executives of 23 and Me can shrug their shoulders and say...

We did not sell anyone's personal data, we just created a very good algorithm using anonymized data for predicting risk and we sold that.

We already know that Big Tech has no qualms with selling our data to the highest bidder.Given a sufficiently appealing honey pot, the lawyers of health insurance companies and hospital conglomerates will find a way around the genetic discrimination laws.That's how you'll be non-consensually genetically profiled, even if you never send a spit sample to a company like 23 and Me, and you won't even get all that useful personal genotyping data!

I'm not sure what to do about this or how to prevent it. This year, I'm planning on getting my whole genome sequencing done by Sequencing.com, a company I deem more ethical than 23 and Me, with a very strong Privacy Forever policy, that seems to be explicitly against the sort of scenario I paint above. I'd much rather send them my spit and money so I can figure out what genetic black swans are in my future that I should prepare for.

The best advice is to...

Take control of your health and genetic destiny before the powers that be do!

Because ultimately, if you wait too long to do so or expect to be taken care of, you'll become just one of many millions of patient ID numbers to be processed as profitably as possible. You can anticipate a bleak future of being maintained in very mediocre health by an utterly uncaring (or totally automated) healthcare bureaucracy.

Check out this philosophical video about why...

Mitochondria are to genes what free will is to predetermination.