23andMe and Other Sites are Selling Users' Genetic Data: How Safe is Your DNA?

Gene sequencing began in the 1970s, but according to a report by Grand View Research (published in September 2020) the global DNA sequencing market size was valued at USD 4.7 billion in 2019 and is expected to expand at a compound annual growth rate (CAGR) of 11.4% from 2020 to 2027.

Rapid advancements in sequencing technology and bioinformatics have enabled the identification of DNA variations -- and popular sites like 23andMe and Ancestry.com have continued to grow -- for $99 you can get a profile of your DNA.

But experts assert that these tests may be "loss leaders" for these sites -- it costs more to do the tests than they are charging users.

But how do these sites make money?

Though both popular sites claim they do not sell their data, there is more ambiguity about who has access to the database themselves, and who has rights to the anonymized data, which might be valuable to pharmaceutical companies, insurance companies, individuals involved in paternity or inheritance disputes, and law enforcement agencies.

23andMe states that it does not grant access to the police, but other companies, such as FamilyTreeDNA, state that they do.

There are examples of DNA data collected on these sites being put to good use like Joseph James DeAngelo who was identified as California’s notorious Golden State Killer and arrested in 2018 after investigators matched a crime scene DNA sample to the results of DTC testing uploaded on to a public genealogy site by the man's relative.

Government-run biobanks have also granted access to police, which also led to the conviction of Swedish foreign minister Anna Lindh’s assassin in 2004.

Experts speculate that biological data could be used for identifying terrorist suspects, tracking military personnel, and the rationing of treatment in overstretched health systems.

We interviewed Dr. David Koepsell who has degrees in Philosophy, Law, and Science. He has written extensively on data ownership, including biometrics, and in particular on gene ownership. In 2009, he published a book titled "Who Owns You?" which was cited in a high-profile lawsuit taken by the American Civil Liberties Union against a company that had patented genes.

The arguments proved successful and were eventually adopted by the US Supreme Court in the overturning of the practice of gene patenting.

He is also CEO of DNA data marketplace EncrypGen.

“Since the first mapping, we’ve been zooming in, getting a better understanding of the different genes, trying to make sense of the complicated code,” Dr. Koepsell said.

Koepsell went on to explain the reason these sites offer such competitively priced tests can often be seen in the small print. Site users who purchased genetic tests are also asked if they would allow their DNA data to be used for scientific research. In most cases, people ticked yes -- it seemed a fair enough request. However, it later turned out this data, packaged in the right way, was many times more valuable even than the initial fee.

“The intention is for pharma companies to make profitable drugs, and that is good for everyone, but I also think that people whose data is being used ought to be paid for the value of that data. It all goes back to transparency," Dr. Koepsell said.

These companies act essentially as DNA data brokers to the pharmaceutical industry, offering the data to the highest bidders. The price differential was significant and while this industry is largely unregulated and hard to measure, DNA data has achieved hundreds of millions of dollars in sales.

“Most people who have availed of the test agree to the scientific research; I didn’t and, as a result, I get frequent emails asking me to change my mind. I’m not going to, even to help their profit or especially not to help their profit," Koepsell said.

GlaxoSmithKline entered into a DNA data deal with 23andMe in 2018 for $300 million to have exclusive access to their datasets. As a trend, it seems the continued use of DNA data that was shared in good faith and with a vague understanding of the implications will be used in a number of industries in violation of most users' wishes and intentions.

A spokesperson for Ancestry.com contacted us after the publication of this story to say:

"Ancestry does not sell consumer DNA data in any form... Our revenue comes solely from the sale of our products and services to consumers. Ancestry has provided customers with the voluntary option to participate in a small number of academic and scientific research studies to contribute to scientific discoveries – as publicly disclosed on our website."

In their privacy statement, Ancestry.com states: "Ancestry does not share your individual Personal Information (including your Genetic Information) with third-parties except as described in this Privacy Statement or with your additional consent. We do not voluntarily share your information with law enforcement. ...we will not share your Genetic Information with insurance companies, employers, or third-party marketers without your express consent."

According to the Ancestry.com privacy statement, although individualized genetic information is not used for other purposes: "Studying aggregated Genetic Information to better understand population and ethnicity-related health, wellness, aging, or physical conditions," though they state this is only done with user consent.

This is an important distinction for users who pay close attention to what they are consenting to when they give their genetic information to sites like Ancestry.com.

Conclusion

I had followed the story of the Golden State Killer for just a couple of years before he was caught. It was a great relief that he was finally brought to justice.

Unfortunately, that doesn't really detract from the underlying message -- when there is sufficient incentive, the government has a critical mass of DNA data from these websites which are capable of finding people at least some of the time.

It's a public good to use this data to bring more criminals to justice. One wonders what abuses of that power are inevitable if the trajectory of increasing DNA information and no oversight on how it is used continues.

Image by Pete Linforth from Pixabay