Why You Should Wait To Sequence Your Own Genetic Data

Title: Why You Should Wait To Sequence Your Own Genetic Data

Author: Matthew Feroz


23andMe, a genetic testing company, has recently been the target of a hack releasing the personal data of 0.1% of their customer base. This hack allowed hackers to access other users’ ancestry information, including an astounding 14 million individuals (Franceschi-Bicchiera). However, 23andMe reported only 5.5 million affected. The victims who were impacted had their birth year, relationship history, and full names all able to be accessed and subsequently sold back as hackers charged $1 to $10 per individual account (Franceschi-Bicchierai). 


 The apparent hacking method that was utilized was brute force, exploiting already released passwords from other companies' data breaches. This means if you use the same password for everything it's now a good time to check the website haveibeenpwned.com, which checks if your email and related passwords have been breached in the past. Even with this resource and having changed my passwords accordingly, this hasn’t exactly saved me and millions of other Americans from becoming targets. 


This is one of the main reasons why I refuse to send my genetic information to sources like 23andMe and why you should consider protecting your genetic information while you can. This past December, the health insurer Humana was sued in a class-action lawsuit for using an AI model to predict and deny care for elderly disabled patients covered under Medicare, even though the software was reported to be 90% faulty (Napolitano). 


Essentially, according to insurance companies, the value of your life is tied to a number. To them, if you have a percentage of certain nucleotides in your genetic sequence in a certain order that indicates that you may be predisposed to a disease then you are less desirable as a patient. I will admit, this isn’t the general standard of care and yes, there is an obvious benefit in the realm of medicine for genetic sequencing but I believe there will come a time where this is the common method of “treatment”. If the government can literally take the autonomy of someone’s body away from themselves through Roe v. Wade, then why wouldn’t they mandate something that restricts people from doing things necessary for their survival based on a person’s genetic information? 


I refuse to let the reality of that statement sink in and I want to be clear that I’m not a complete cynic. I trust my doctor because I have faith in the systems of education and science. I have less trust in the government and even less trust in Anne E. Wojcicki, the CEO of 23andMe because she does not have her best interest vested in me. She is  Further, her sister Susan Wojcicki used to be the CEO of YouTube, a company affiliated with Google which has had its own book long list of privacy violations, I guess it runs in the family (Heiligenstein). 


So you’ve heard it here first: do not trust the mega-corporations with your genetic information or, probably, in general. There are alternatives as some sequencing methods can be configured to only port to hardware that can be stored in your own home such as a USB. This is a piece of data that you can choose what to do with. Plus, the entire human genome can be sequenced in 3.2 gigabytes meaning that it’s something accessible to anyone with a device that can store said data.

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What should you do with your own genetic information? Don’t ask me, that’s your business and you’re free to do anything with it but it’s yours and not anyone else's. I think it’s comparable to a social security number, it’s tied to your very existence. If you don’t feel comfortable with people seeing your social security number then you probably should feel the same about your genetic information.


In the future, AI should be more than capable of doing the sequencing of genetic information as finding patterns and recognizing differences within patterns is what it does best. I see a future in which I can plug in a hard drive to a system that reads my genetic information and gives me the ability to select which person, be it a health provider or government system, to share my data with. This is true autonomy as I have control of my own genetic data.


In conclusion, I think that genetic information is going to have a major influence on healthcare in the future. We’re already seeing it now so you should wait before willingly sharing something that may become extremely valuable in the future. Again, I’m not someone who believes that genetic research or the study of genetics as a whole is bad, it’s truly amazing what can be done with genetic information but count me out when sharing it with businesses that can be easily hacked and don’t have your best interest at hand. 


Sources:


  1. Franceschi-Bicchierai, "23andMe Confirms Hackers Stole Ancestry Data on 6.9 Million Users," TechCrunch.

  2. Napolitano, "Health Insurance Humana, United Health AI Algorithm," CBS News.

  3. Heiligenstein, "Google Data Breach Timeline," Firewall Times.



 

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