According to a Vox article by Rani Molla, 30 million people submitted DNA samples to genetic testing corporations— more than half of which went to Ancestry.com and 23&me. Genetic testing companies provide information to their customers, such as detecting susceptibility to genetic diseases and tracing ancestral ethnicity. 

However, according to a Guardian article by Laura Spinney, these companies’ primary sources of revenue come not from selling DNA testing kits to the public but from selling their collected DNA samples to powerful third-party pharmaceutical companies. Genetic testing companies that sell DNA samples generate astronomical revenue. 

As it turns out, submitted DNA samples can not only be sold but also federally repossessed. It is explicitly stated in U.S. legal code that, given they have been granted a warrant, federal officers withhold the right to extract the genetic information on any individual from genetic testing companies’ databases. 

Should we as consumers think twice before surrendering our most confidential and private form of identity? 

Anne Wojcicki, CEO of 23&me, said the company’s mission is to “help people access, understand and benefit from the human genome.” 

Thus far, according to a NewsScientist article by Jessica Hamzelou, they have sold over 10 million genetic testing kits, which has led to countless cases of the reunification of lost relatives. 

“I would one-hundred percent recommend this service. I think it’s really cool to understand your past, and 23&me is a great source to do so,” sophomore Andreas McClintock said. 

What brings media attention to these genetic testing companies is their ability to allow users to navigate their ancestry digitally for prices significantly lower than those you would see at genetic clinics. 

“Companies such as 23&me have proliferated over the past decade, feeding people’s hunger to know who and where they come from,” Spinney said. 

Sophomore Griffin Rick is one of many who took an Ancestry.com test. 

“We wanted to see what parts of the family traced back to different parts of the world. I think it’s an interesting idea to try to see where you come from and find your origins. For those reasons, I think it’s a fantastic business idea too,” Griffin said. 

Ancestry.com also provides historical records and documents relating to a user’s heritage. The information collected from DNA samples can be enough to determine physical traits, such as hair and eye color, and potentially genetic disorders. 

23&me DNA test results, Spinney said, have the potential to reveal to the consumer whether they are susceptible to any “diseases their genes might predispose them to.” 

However, according to Dr. Martin Schwartz, Professor of Medicine and Cell Biology at Yale, the current science behind predicting prospective health is still in its early stages. 

“Unless there are singular polymorphisms [discontinuous genetic variations] that have been previously linked to specific diseases,” Schwartz said. “It is difficult to come by any notion of disease risk.” This is due to “the large majority of diseases that plague humanity being multigenic, where hundreds or thousands of polymorphisms contribute to the tendency to develop diseases.” 

Additionally, there have been cases in which mistakes were made in the DNA sequencing process. 

“Companies like 23&me are not [heavily] regulated by the Food and Drug Administration [FDA], who would generally be looking at what techniques they’re using or how sterile the situation is,” former biology teacher Amanda Whalen said. “Going to a real geneticist, however, who uses a legitimate lab scenario where DNA is sequenced on a professional and individual level, would be more reliable.” 

Possibly the most common misconception of these companies is that they generate revenue solely from selling DNA testing kits, when in fact, an entire market exists in which pharmaceutical giants buy and generate huge profits. 

According to a Business Insider article by Erin Brodwin, 23&me announced in 2018 that it would “share consumers’ anonymized genetic data with pharmaceutical giant GlaxoSmithKline as part of a $300-million deal.” 

Shockingly, according to Spinney, only one-third of the 86 genetic testing companies offering services in 2018 “explained to customers how their data would be used.” 

And even though 80% of users consent to their DNA being sold and further tested, on 23&me’s and Ancestry.com’s website, “It doesn’t even say ‘consent;’ it says ‘accept,’” Whalen said. “And those who do accept don’t even read the terms.” 

Why do these DNA samples hold so much value in the eyes of pharmaceutical companies? 

“The value is in the research,” Schwartz said. “It is in correlating particular features of DNA sequence with disease susceptibility [and supplying medicine to treat those diseases]. Due to this being possible, the potential of developing personalized medicine that people need is enormous.” 

However, Schwartz said there is an “opportunity for misuse.” A future dilemma is a possibility that genetic data could be leaked to health insurance companies, which would increase monthly premiums of those who have ‘risky’ or ‘faulty’ genes, which is why DNA samples that are currently sold to big pharma are de-identified so that there is a real, testable sample but no name to link it to. 

“I trust large corporations such as these wouldn’t make immoral decisions like that,” Andreas said. 

The danger lies in the possibility of data theft and the security of the digital databases in which the collected DNA sequences are stored. “As far as some of the lesser-known genetic testing companies go, if you’re looking at the protection of that data, they’re not exactly hacker-proof,” Whalen said. 

“I think in this day and age that it is a problem that we have all probably at least become aware of. Hopefully, these databases are secure,” Griffin said. 

“These companies don’t have the luxury of being unethical,” said Schwartz. 

They are still for-profit enterprises that require revenue to continue doing business. With no new revenue will come no new drugs, and the development and improvement of modern medicine would stall. 

Regarding those who lawfully have access to these databases, another party is involved: the U.S. government. By obtaining a warrant from a court of competent jurisdiction, federal officers can access any individual’s submitted DNA sequence. As stated in Title 18 U.S. code § 2703 section (c) (1), “A governmental entity may require a provider of remote computing service to disclose a record or other information”… “when the governmental entity obtains a warrant.” 

In a typical case, though, the government would only be inclined to use collected DNA sequences for court cases in which genetic evidence is subpoenaed. In fact, as Schwartz said, “companies like 23&me don’t even ask for warrants; they freely cooperate with law enforcement most of the time just upon request.” 

An IEEE Spectrum article by Thor Benson said that “the Federal Bureau of Investigation (FBI) has a DNA database called the Combined DNA Index System (CODIS) that currently contains over 14 million DNA profiles.” 

The world has moved from the thumbprint being the main identifying trait to it being the face, and now, DNA, which Whalen said was the “ultimate specification that brings personal identification to the next level.” 

Ultimately, the decision is left to the consumer. It is their responsibility to conduct sufficient research before deciding whether to submit a sample of their DNA to either a for-profit entity or a genetic professional who performs sequencing on a more individual basis. 

Moreover, despite the good intentions of genetic research companies, it is simply a matter of whether someone is willing to roll the dice with their identity at stake.