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By SEAN OGDEN
Industry
has hypercommodified every aspect of human existence, and personal data
is no exception. But DNA data is in a league of its own: permanent,
deeply personal, and ultimately monetized as an institutional asset.
The nonconsensual collection of genetic data was covered in a previous hashtag, but the voluntary “direct-to-consumer” DNA market, which introduces equally grave, hidden dangers, is exploding and projected to skyrocket to $2.5 billion by 2032.
The industry, led by 23andMe, AncestryDNA, and numerous smaller startups, promises fun
ancestry reports and health insights. What it never advertises is that
you are trading your private genome for entertainment, corporate profit,
and significant risks you cannot control.
Insurance Company DNA Predation
Your DNA can be weaponized against you. Insurers and other third parties can secretly buy genetic data and
feed it into AI risk models. Markers for cancer, Alzheimer’s, or other
costly conditions can label you as “high risk” and result in hiked
premiums or reduced coverage long before a single symptom appears.
Current US law offers weak protection. The Genetic Information Nondiscrimination Act, or GINA,
blocks discrimination in health insurance and employment but leaves
life, disability, and long-term care insurance completely unprotected.
However, GINA fines for misuse are rarely substantial, often only thousands of dollars per violation, while insurance companies can save or profit enormously. This creates only nominal deterrence and leaves companies free to exploit your genome.
Predictive models are only getting more powerful, and history shows companies routinely find ways around regulatory legislation. Once they possess your genetic data,
they have little incentive to give it up if doing so would cut into
profits. Your DNA becomes a permanent asset for them, not a personal
safeguard for you.
When DNA Companies Fail, DNA Is for Sale
If a DNA-testing company folds, merges, or is acquired, your genetic data is treated like a corporate asset. Few regulations prevent it from being sold to buyers you never agreed to.
This is not hypothetical. For example, 23andMe disclosed a 2023 breach affecting nearly 7 million users, and GEDmatch exposed
its database to law enforcement. Smaller companies vanish quietly,
leaving customers uncertain where their genomes ended up. DNA is treated
like any other corporate asset. It can be transferred, sold, or
repackaged, without your knowledge or consent.
The ‘Fun-for-Data’ Trap
The
industry markets DNA testing as fun, but this is a deception. Consumers
hand over their most permanent biological identifier for a novelty
ancestry chart claiming they are “17 percent Italian” or “20 percent
German,” while the privacy of their biometric data is gone forever.
The trade-off is insane. Captured DNA can be reanalyzed indefinitely, used in pharmaceutical research, or combined with behavioral and demographic data to build predictive profiles. One person’s genome can expose relatives who never consented, creating threats we cannot yet imagine.
Genealogy databases are increasingly tapped in criminal investigations,
even when only a single family member submits DNA. Some companies
require warrants. Others cooperate broadly. As databases expand, nearly every American will be identifiable through a relative’s genetic submission, consent or not.
A Permanent Identifier in a Fragile Industry
Consumers who have submitted DNA can request deletion of
raw data and account information. It’s not perfect. Physical samples
may persist unless explicitly destroyed, but deletion reduces future
risk.
DNA is unique. You cannot reset it like a password, revoke it like a login, or replace it like a credit card. Your genome does not belong in the servers of companies that may be breached, bought, merged, or shuttered tomorrow.
Your DNA is too valuable, too permanent, and too revealing to be treated like entertainment or a corporate asset.
Hashtag Picks
Protecting the Data of You and Me: Risks of DNA Hacking and Genomic Data Breaches Prompt Calls for Cyber-Biosecurity
From The Quantum Record:
“While cybersecurity weaknesses continue to plague millions of
businesses and people who lose billions of dollars annually stolen from
bank accounts and credit cards, the theft of genetic information can be
particularly damaging because, unlike compromised credit cards, we can’t
replace our DNA. A major data breach that occurred two years ago
highlights the risk.”
Audit Uncovers Security Weaknesses in the NIH All of Us Security Program
The author writes,
“An audit of the National Institutes of Health (NIH) All of Us Research
Program has uncovered privacy and security weaknesses that put the
health information of more than 1 million individuals at risk of
compromise.”
Genetic Privacy Erodes as Millions of DNA Profiles Are Entered Into U.S. Database
The author writes,
“In May 2024, researchers at Georgetown Law’s Center on Privacy &
Technology released a sprawling report on how the Department of Homeland
Security (DHS) had quietly built one of the most expansive DNA
surveillance systems in American history. What began as a rule change in
the waning days of Donald Trump’s first administration had by then
spiraled into a massive dragnet. More than 1.5 million genetic profiles
were funneled into the Federal Bureau of Investigation’s (FBI) Combined
DNA Index System (CODIS) in just four years, dwarfing the pace of
criminal law enforcement collection. The report warned that immigration
powers were being twisted into a tool for population-scale genetic
monitoring, with people of color disproportionately swept up into the
system.”
Bankruptcy Court Approves Sale of 23andMe
The author writes,
“A federal bankruptcy court has approved the sale of direct-to-consumer
genetic testing company 23andMe to TTAM Research Institute. TTAM was
founded by former 23andMe CEO Anne Wojcicki to purchase 23andMe, and
will acquire the company after tabling a successful $305 million bid.
Under the deal, TTAM will acquire substantially all of 23andMe’s assets,
including the 23andMe Personal Genome Service and Research Services
business lines, as well as the Lemonaid telehealth business.”
Genetic Data Is Another Asset to Be Exploited — Beware Who Has Yours
From The Guardian:
“The bankruptcy of genealogy company 23andMe has resulted in a fire
sale of millions of people’s genetic information — and there’s no
shortage of eager buyers with questionable motives.”
Attorney General Bonta Urgently Issues Consumer Alert for 23andMe Customers
From the State of California Department of Justice:
“California Attorney General Rob Bonta today issued a consumer alert to
customers of 23andMe, a genetic testing and information company. The
California-based company has publicly reported that it is in financial
distress and stated in securities filings that there is substantial
doubt about its ability to continue as a going concern. Due to the trove
of sensitive consumer data 23andMe has amassed, Attorney General Bonta
reminds Californians of their right to direct the deletion of their
genetic data under the Genetic Information Privacy Act (GIPA) and
California Consumer Privacy Act (CCPA).”
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