I was recently made aware of an alarming hypothesis about the potential liaisons between genetic profiling services (which is a great idea for Biohackers), the +3 trillion dollar healthcare industry, big social media platforms, big data and big government...
So you send a spit sample of your DNA into 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 that with a little research you can use to risk profile yourself for cancer, heart disease, Alzheimer's and a myriad of other medical conditions that you 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. It's a pretty good idea.
Critics of genetic profiling would 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 bastards will use your data to profile you! If you're a carrier of some problematic genetic traits (which you likely are) 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!
It would be VERY profitable for both the insurance companies and the genetic profiling 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 health 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...
a) Át least in the United States there are laws meant to prevent this sort of thing, namely the Genetic Information Nondiscrimination Act of 2008.
b) 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.
c) Politicians and various types of influential activists are very interventionistic with 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 upon their genes that would be instantly scandalized and racialized. It would really put any companies or executives involved in the cross hairs of the healthcare industry regulators.
23 and Me was founded by the ex-wife of Sergey Brin, the cofounder of Google. They are highly connected to all the major silicon valley tech firms and services that you likely use everyday.
Given the tremendous profit incentive, is it highly likely that genetic profiling services like 23 and Me are cross referencing genotyping data with their customer's social media data to build risk profiles for the healthcare industry just based upon your digital footprint?
Of course 23 and Me encourages you to connect your social media profiles to your 23 and Me 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 many thousands of data points about my preferences and behaviors. You could debate that they know me better than I know myself.
The kinds of data scientists that are employed in these firms 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 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.
You get the idea, combining the big data of the many thousands of genetic profiling customers with the big data of billions of social media users you could likely predict someone's genes quite accurately just with their social media data.
The genetic profiling 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 upon you clicking that harmless Connect to Facebook button.
If you don't use social media, well good for you... But if you do that's 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
Hey we did not sell anyone's personal data, we just created a very good algorithm using anonymous data for predicting risk and we sold that.
- We already know that the big social media giants have 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 none-consensually genetically profiled and you won't even get all that useful personal genotyping data that actually helps you!
I'm really not sure what to do about this or how to prevent it. I'm still planning on getting genotyped by 23 and Me although if a more ethical company that is explicitly against this sort of thing enters the market to compete with them, 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.
I guess the best advice is to...
Take control of your health and genetic destiny before the powers that be do!Check out this philosophical video about why...
Mitochondria are to genes what free will is to predetermination. Ultimately...If you wait too long 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 possibly. You can anticipate a bleak future being maintained in very mediocre health by an utterly uncaring (or totally automated) bureaucracy.
What do you think...
Am I being to conspiratorial here? Is this something we should be worried about?
