World DNA Day was April 25. This day marks the "anniversary of the publication of DNA double-helix structure in Nature from April 25, 1953 by Dr. James Watson and Dr. Francis Crick." So, the publication is 72 years old.
It was not as long ago that the scientific community figured out how to decode that chemical makeup - our Deoxyribonucleic Acid (DNA)(2003). This is a signature for each of us. We may have great similarities in our personal chemical composition, but we have also learned that we are each somewhat unique.
That has made for a great deal of legal activity. DNA is not new to this blog, see Nature v. Nurture (December 2018) and the posts cited there. See also DNA, Pharmacogenetic Testing, and Louisiana (August 2018). Despite all it might do for us, Personalized Medicine (September 2019) outlined challenges with privacy and more.
Despite your DNA being very personal and revealing, a great many have intentionally added their DNA to databases. This has resulted in many instances of proving someone's innocence and examples of tracking criminals using "familial DNA" to narrow suspect populations. See Science, the Right to Privacy and Big Brother (June 2018), and an ongoing prosecution in Idaho.
The engagement of DNA for the exoneration purpose is usually a matter of sequencing DNA evidence from crime scenes and comparing it to samples from someone convicted for a crime. This process is focused on the guilt of a particular person. As of 2025, this testing has exonerated "614 wrongly convicted people," according to the Innocence Project. That article is updated annually.
The familial DNA use is broader. It is dependent on databases of DNA testing results. Like much else in the Internet age, it has been voluntarily submitted. And with its vast potential to impact the test subject and their relatives, privacy is an issue. When you submit a sample, you entrust your privacy and your relatives.
How much is enough? A Florida woman vacationing in Paris a decade ago was a robbery victim. The British Broadcasting Corporation (BBC) reported recently that officials arrested a group of miscreants for the crime. They were traced by "DNA traces left at the scene." This was apparently on "plastic bands used to tie the wrists" of the victim, according to Yahoo News. Imagine, merely touching something may be enough to lead the police to your door.
There is a wealth of DNA information available. The National DNA Index includes over 18 million "offender profiles" according to the FBI, perhaps more. According to MIT Technology Review, over 26 million had voluntarily opted into the commercial databases by 2019 (Ancestry, 23andMe, Etc.). The volume continues to grow.
That seems to pale compared to the 346 million people who live in this country. Nonetheless, Science noted that a database of only "1.3 million" would afford some access to about "60% of Americans of European descent." This is not because that 60% are in the database, but because someone that is their "third cousin or closer (is) in this database." if 1.3 million equates to 60%, what does 18 million, 26 million, or their potential combination of 44 million provide access to?
Ancestry.com has been a major collector of DNA samples. Customers who submit there can use the similarities in their samples to connect themselves with family trees, historical ancestral lines, and present-day relatives. That company proclaims that "trust is our top priority," and "privacy is a top priority." They proclaim that "personal information (will be managed) with integrity and respect."
Millions of Americans have sent in DNA samples. The largest database in 2019 was Ancestry, and that appears still true. MITTechnology Review claimed "26 million (had) taken at-home ancestry tests" by 2019. The Federal Bureau of Investigations has been collecting DNA also. It is filed away in a "National DNA Index System" that law enforcement can use for individual or familial research.
However, the first opportunity for DNA access was 23andMe, a company founded to help people "access (their) genetic information and truly understand what it means for (their) health?" This voluntary process was also intended to "help to accelerate genetic discoveries that offer the potential for new insights and treatments."
People paid this company to sequence their DNA. They had curiosity and questions. They bared their very essence to answer those questions.
23andMe grew and celebrated. It became a $6 billion company after a public offering. It was challenged by singularity, though. There were few repeat customers. Many businesses have thrived through designed obsolescence (the product wears out and you need a new one). But 23andMe was designed so "that no consumer should need to purchase more than once," according to the Observer. One might say this company had designed obsolescence.
Then, in March 2025, the company spiraled into bankruptcy. It is striving to sell itself, to continue as a business with other owners. Or, like so many other companies, its parts may be sold separately (remember when Hostess "broke up into bits?").
CNN reports that with the bankruptcy and uncertain future, the "15 million customers" who voluntarily sent 23andMe DNA should "request the deletion of their accounts and data from the site." This is recommended by "consumer advocates" to prevent the DNA "ending up in unexpected hands."
They pontificate that potential exists that people's DNA data will end up in the hands of "the highest bidder." Why would someone want the genetic information of 15 million Americans?
CNN says that data may be of interest to health insurers, life insurers, and others. The California Attorney General issued "a consumer alert in response to the bankruptcy, urging users of the site to consider deleting their accounts." Suddenly, this Attorney General is concerned. But, you might ask, what changed?
Pat Benatar is resonating in my head as I type: "It's a little too little, it's a little too late." (Little Too Late, Chrysalis,1982). That song laments the tears of regret, and Benatar's conclusion that the tears are too late. Regret is easy, but is it avoidable?
The point is that 23andMe has a privacy policy. The company has a commitment to its customers and has promised not to sell their data. They have committed to insisting that whoever buys or acquires their information trove will honor that privacy policy. Nonetheless, CNN reports that "the policy also states that it can be changed at any time."
Thus, 23andMe or whoever comes to own its assets (your DNA data) can change their privacy policy and do with it what they wish. And, yes Virginia, they always could.
And thus, Pat Benatar fades from my head and Billy Joel comes raging in with A Matter of Trust (1986). He addresses emotions, beliefs, betrayal, resistance, and doubts. He concludes, time and again, with the reminder "it's a matter of trust." Even when there is "a passionate start," when there is "recovery," when there is "faith," there will nonetheless be "a moment of truth" - "it's a matter of trust."
As millions now ponder the protection of their information, one wonders why consumer advocates only now sound their alarm. There is conjecture that the purchaser of 23andMe could change a privacy policy, but 23andMe always could. Any of the DNA companies always could. The FBI always could, as it collects and catalogs. And, there is real potential that your DNA has already been added to various databases, or that your cousins' has.
The bankruptcy of this formerly $6 billion company has not changed anything. It has "always been a matter of trust." And on that trust, samples will continue to be obtained, analyzed, cataloged, and stored. You can no more prevent it than you might stop the sun from rising.
Happy World DNA Day 2025.
