The Genetic Privacy Crisis of 2025: Why Your DNA Is Being Sold (And How to Disappear Before It's Too Late)

On March 23, 2025, a Monday morning, 23andMe quietly filed for Chapter 11 bankruptcy. By that afternoon, California's Attorney General Rob Bonta issued an urgent consumer alert: "Health insurance companies and life insurance companies have shown interest in this data." He advised all 15 million 23andMe customers to immediately delete their accounts.

Within eight weeks, Regeneron Pharmaceuticals—one of the world's largest pharmaceutical manufacturers—announced it was purchasing 23andMe's entire genetic database for $256 million. Your DNA. The saliva sample you mailed in trusting a company that promised privacy. The genetic code that reveals your predisposition to cancer, heart disease, Alzheimer's, diabetes—and whether you carry genetic markers for conditions you may never develop. All of it, now owned by a drug company optimizing medications for profit.

The bankruptcy court approved the sale on July 6, 2025. But here's what the news coverage missed: this is not an isolated incident. This is the inevitable outcome of an unregulated industry where your most intimate biological information—literally the blueprint of who you are—has been treated as a commodity rather than sacred data.

And it's only getting worse.

In 2025, we're witnessing the collapse of genetic privacy across multiple fronts simultaneously: direct-to-consumer genetic testing companies bankrupting and selling their databases; law enforcement accessing genetic databases through familial DNA matching without warrant or consent; insurance companies exploring ways to use genetic information despite legal prohibitions; pharmaceutical companies building genetic profiles of millions without explicit consent; and artificial intelligence systems training on genetic data harvested from public databases and breached repositories.

The genetic information you thought was private—information about your health risks, your ethnic ancestry, your family relationships, your biological vulnerabilities—is now circulating through systems you never authorized, accessible to entities you never imagined, with protections far weaker than you believe.

This is the genetic privacy crisis of 2025. And it's already too late for the 15 million people whose DNA 23andMe just sold.

The Genetic Data Explosion: Why Your DNA Is Suddenly Valuable

How We Got Here: The Rise and Fall of Consumer Genomics

When 23andMe launched in 2007, the promise was revolutionary: discover your ancestry, learn about your genetic health risks, connect with genetic relatives—all for under $300. Within a decade, millions of people had mailed saliva samples to the company, voluntarily creating the largest genetic database in human history outside of academic research institutions.

The business model was sophisticated: customers paid $200 for genetic testing. That customer data became increasingly valuable because:

1. Research Data - 23andMe partnered with pharmaceutical companies, offering researchers access to anonymized genetic data linked to health outcomes. Pharmaceutical manufacturers could identify genetic variations associated with diseases and develop targeted treatments. This research partnership was extraordinarily valuable—potentially worth billions in accelerated drug development.

2. Direct Health Information - Unlike government genetic databases (which contain DNA from convicted criminals or patients in medical systems), 23andMe contained data from healthy consumers who'd voluntarily participated. This represented genomic diversity impossible to obtain through traditional research channels.

3. Family Networks - The "DNA Relatives" feature allowed people to connect with genetic relatives, creating a comprehensive mapping of family relationships across millions of individuals. This relational data is valuable to researchers, marketers, and potentially to law enforcement seeking to identify individuals through family connections.

4. Longitudinal Health Data - 23andMe customers often provided health information, allowing the company to track genetic correlations with self-reported medical history over time. This longitudinal dimension made the data exponentially more valuable for research.

For years, this created a sustainable business model: customers paid $200 for genetic insights, 23andMe retained the raw genetic data, and the company monetized that data through research partnerships with pharmaceutical companies. Everyone won: customers got cheap genetic testing, researchers got valuable data, 23andMe got revenue from both sources.

Then the economics collapsed. As direct-to-consumer genetic testing became commoditized, competitors (AncestryDNA, MyHeritage, LivingDNA, etc.) flooded the market with cheaper options. 23andMe's stock price plummeted from $232 per share in February 2021 to under $5 per share by 2025. The company that had been valued at $2.5 billion now couldn't sustain operations.

The bankruptcy wasn't a surprise to market observers—it was inevitable. But the resolution was shocking: 23andMe's most valuable asset (15 million genetic profiles) was sold in a fire sale to the highest bidder. That highest bidder was a pharmaceutical company with entirely different incentives than 23andMe had maintained.

What Regeneron Actually Bought (And What It Means)

When Regeneron Pharmaceuticals purchased 23andMe's genetic database for $256 million, they were acquiring:

Approximately 15 million genetic profiles from individuals across the United States, Europe, and other countries, representing genetic diversity across multiple ethnic backgrounds and demographic groups.

Raw DNA sequence data revealing genetic variations associated with thousands of traits and health conditions. Regeneron can use this data to identify genetic patterns, correlate genetic variations with pharmaceutical response, and develop targeted medicines.

Health outcome correlation data linking genetic information to self-reported health conditions, allowing Regeneron to identify genetic markers associated with disease presence or absence.

Demographic and family relationship data connecting individuals to their genetic relatives, revealing family structures and population relationships.

The most valuable component: a research infrastructure already built to access and analyze the data, with privacy governance structures already established (though potentially reinterpretable under new ownership).

What Regeneron gained that matters most: the ability to develop targeted pharmaceuticals with unprecedented precision. By correlating genetic variations with disease presence, treatment response, and medication side effects, Regeneron can develop drugs targeting specific genetic populations—and market those drugs specifically to individuals matching those genetic profiles.

This is why pharmaceutical companies are interested in genetic databases: they enable precision medicine at scale. Instead of developing drugs that work for "the general population," Regeneron can now develop drugs optimized for specific genetic profiles present in their database. They can then use that same genetic information to identify—and market to—the individuals most likely to benefit from those drugs.

The business model shift is profound: 23andMe sold customers cheap genetic testing. Regeneron is buying customers' genetic information to develop and sell them genetic-specific drugs they may not need.

The Privacy Collapse: Where Genetic Privacy Legally Fails

The Regulatory Gap: Why Your Genetic Privacy Has Almost No Legal Protection

The fundamental problem with genetic privacy in 2025 is regulatory: genetic information collected by direct-to-consumer companies like 23andMe exists in a legal void.

HIPAA (Health Insurance Portability and Accountability Act) protects genetic information collected by hospitals, health insurers, and healthcare providers. If your doctor orders a genetic test, that information is protected under HIPAA's comprehensive privacy and security rules.

HIPAA does not protect genetic information collected by 23andMe, AncestryDNA, or other direct-to-consumer companies. These companies collect genetic information from consumers, not from healthcare providers. Therefore, HIPAA doesn't apply. The genetic information you submit to 23andMe is treated as consumer data, not healthcare data, with minimal legal protections.

GINA (Genetic Information Nondiscrimination Act of 2008) prohibits health insurance companies and employers from making employment or health insurance decisions based on genetic information. This is the primary federal protection for genetic data.

GINA does not protect against discrimination by life insurance companies, disability insurance companies, or long-term care insurance companies. This means that even though your health insurer cannot use genetic information to deny you coverage or charge you higher premiums, your life insurance company can. If genetic testing shows you have elevated risk for heart disease, a life insurer can legally deny you a policy or charge dramatically higher premiums, even if you've never had a heart attack.

Only Florida and a handful of other states prohibit life insurance discrimination based on genetic information. In most of the United States, life insurers can legally access and use genetic information.

State Privacy Laws including California's CPRA provide some protections for genetic data, including right to deletion and limitations on sale. However, these state laws are inconsistent, and bankruptcy proceedings often override consumer protections as assets are liquidated to pay creditors.

The DOJ Bulk Data Rule (April 2025) restricts transfer of genetic data to "countries of concern" like China and Russia. However, this rule only applies to bulk transfers—it doesn't restrict transfers to domestic pharmaceutical companies or to law enforcement with warrants.

The result: your genetic information has less legal protection than your financial records, your health records, or your communications. Your bank has stronger legal obligations to protect your data than 23andMe had to protect your DNA.

The Insurance Loophole: Genetic Discrimination Where GINA Fails

The California Attorney General's warning after 23andMe's bankruptcy specifically mentioned life insurance companies as potential buyers of genetic data. This is not paranoia—it's mathematical interest.

Life insurers profit by identifying high-risk individuals and denying them coverage or charging premiums that offset expected payout costs. Genetic data is extraordinarily valuable to life insurers because it reveals health risks before symptoms appear.

Consider the economics: A 35-year-old with a genetic marker for early-onset Alzheimer's might otherwise be charged normal life insurance premiums. But if the insurer knows about the genetic risk, they can:

• Deny coverage outright (legal in most states)
• Charge premiums 50-200% higher than standard rates (legal in most states)
• Require additional underwriting and testing (legal in most states)
• Use the genetic risk to refuse renewals (legal in most states)

GINA only prohibits health insurance from considering genetic information. Life insurance can legally use it. And when someone is denied life insurance or charged prohibitive premiums based on genetic information, the consequence is real: they cannot obtain financial protection for their family.

This is why pharmaceutical companies buying genetic databases represents a direct threat: they can use the data to develop targeted drugs, then partner with life insurers to identify—and profit from—individuals most likely to benefit from expensive genetic-specific treatments.

The Law Enforcement Gateway: Familial DNA Matching Without Consent

Perhaps the most troubling genetic privacy development in 2025 is law enforcement's systematic access to genetic databases through familial DNA matching.

The premise is straightforward: if crime scene DNA is run through a genetic database and finds no exact match, it can still find close relatives. By identifying relatives genetically, law enforcement can then investigate the family of the genetic match, often identifying the actual perpetrator through genealogical research.

The famous case was the Golden State Killer—arrested in 2018 after law enforcement uploaded crime scene DNA to GEDmatch (a public genetic genealogy database) and found familial matches. The suspect had never volunteered his DNA to any database; he was identified through a relative's genealogy research.

Since then, familial DNA matching has become standard law enforcement practice. Police departments across the U.S. now:

• Upload crime scene DNA to genealogy databases
• Identify familial matches through automated algorithms
• Use those matches to investigate family members of the matched individuals
• Often identify perpetrators who were never suspects and whose DNA was never voluntarily submitted

The legal mechanism is murky. Most DNA databases claim they don't cooperate with law enforcement. However:

• GEDmatch explicitly allows police searches
• Some individuals voluntarily upload DNA to public databases knowing it can be accessed
• Police create fake profiles to conduct searches
• Court orders compel some companies to cooperate

The result: If any of your genetic relatives submit DNA to a genealogy database, you can potentially be identified and investigated by law enforcement without your knowledge or consent. You don't need to have voluntarily submitted your DNA. You don't need to have been suspected of a crime. You simply need to be genetically related to someone whose DNA is in a searchable database.

This violates the principle of genetic privacy at a fundamental level: your DNA information becomes accessible to law enforcement based on family members' choices, not your own.

How Genetic Data Is Being Used Against You (And How You Don't Know It)

The Pharmaceutical Pipeline: From Database to Drug to Targeted Marketing

The path from genetic data to pharmaceutical profit follows a clear pipeline:

Stage 1: Genetic Analysis - Regeneron (or another pharmaceutical company) analyzes genetic variations in their database to identify genetic patterns associated with specific diseases or medication responses. They discover that individuals with a particular genetic variation respond dramatically better to an experimental heart disease drug.

Stage 2: Drug Development - Using insights from genetic data analysis, Regeneron develops targeted pharmaceutical treatments designed specifically for individuals with those genetic variations. The drug is more effective for genetically-matched individuals and generates faster FDA approval and accelerated time-to-market.

Stage 3: Market Identification - Regeneron now knows exactly which genetic profiles benefit from the drug. They have genetic data on millions of individuals. They can identify everyone in their database (and potentially in genetic databases they acquire or access) with the genetic profile most likely to benefit.

Stage 4: Targeted Marketing - If regulatory structures allowed it, Regeneron could identify individuals matching the ideal genetic profile and market the drug directly to them. "We noticed you have genetic markers for increased heart disease risk. We've developed a medication optimized specifically for your genetic profile."

This targeted marketing is currently restricted by FDA rules on direct-to-consumer pharmaceutical advertising. However, those restrictions are being challenged in court, and some loopholes already exist. Even without explicit direct-to-consumer marketing, pharmaceutical companies use genetic data to identify physicians whose patients match target genetic profiles and market drugs to those physicians.

The net result: Your genetic information, sold in a bankruptcy auction, is now being used to identify you as a specific target for expensive pharmaceutical treatment you may not need.

The Insurance Discrimination Pipeline: Genetic Risk Assessment

The insurance industry is explicitly interested in using genetic information for risk assessment. Insurance profitability depends on identifying high-risk individuals and either excluding them or charging premiums that offset expected claims.

Genetic testing has identified thousands of genetic variations associated with health conditions. Life insurers are interested in using this information to charge higher premiums or deny coverage to individuals with genetic markers for disease risk.

The current legal framework prohibits this for health insurance (GINA). But for life insurance, disability insurance, and long-term care insurance, using genetic information is currently legal in most U.S. jurisdictions.

If a life insurer gains access to genetic data showing you have genetic markers for Alzheimer's disease (which appears on the genetic testing report but may never manifest as actual disease), the insurer can:

• Deny you life insurance coverage
• Charge you premiums 100-300% higher than standard rates
• Require additional investigations and underwriting
• Eventually refuse to renew your policy

None of this is currently illegal. All of it follows logically from insurers' ability to access genetic information.

The Surveillance State Application: Genetic Identification and Population Tracking

Perhaps the most dystopian application of genetic databases is government surveillance and population control.

Genetic databases containing millions of individuals from specific demographic groups allow governments to:

• Track family relationships and identify social networks
• Identify individuals with genetic markers for specific traits or risks
• Conduct population-level genetic research on specific ethnic groups
• Correlate genetic data with public records to build comprehensive profiles

While this is currently limited to law enforcement access for criminal investigations, the infrastructure is being built for broader surveillance applications.

Multiple countries have already begun building national genetic databases. China maintains genetic databases of ethnic minorities. The U.S. maintains genetic databases of convicted criminals (CODIS). The infrastructure exists for comprehensive genetic surveillance if governments choose to implement it.

The concern isn't speculative: if a government acquired access to genetic databases containing millions of citizens' genetic information, they would have the ability to conduct surveillance and control at a level previously impossible.

Genetic Privacy Deletion: What You Can Actually Do

Given these threats, the question becomes: can you actually disappear your genetic data before it's weaponized against you?

Immediate Actions: Deleting From Direct-to-Consumer Companies

If you have genetic data with 23andMe, AncestryDNA, or other direct-to-consumer companies, you have the right to request deletion under privacy laws in many jurisdictions.

For 23andMe (Post-Bankruptcy):

1. Log into your 23andMe account and go to "Settings"
2. Scroll to "23andMe Data" and click "View"
3. Scroll to "Permanently Delete Data" and click the option
4. Confirm deletion through email link sent to your account

Important: Simply deleting your account does not delete your genetic data. You must specifically request data deletion and biological sample destruction.

23andMe maintains that a new owner must comply with privacy policies allowing data deletion. However, this is contractually dependent on the new owner's cooperation. If Regeneron refuses deletion requests, your only recourse is legal action.

For AncestryDNA:

1. Log into your Ancestry account
2. Go to "Account Settings" then "DNA Settings"
3. Click "Delete My DNA Profile"
4. Confirm deletion

For Other Direct-to-Consumer Genetic Testing Companies:

Each company has unique deletion procedures. However, most must honor deletion requests under:

• GDPR (European users)
• CCPA/CPRA (California users)
• Similar state privacy laws

Contact the company's privacy officer and explicitly request:

• Deletion of your genetic data
• Destruction of your biological sample
• Deletion of any related health information or family connections
• Confirmation of deletion within specified timeframe

Long-Term Protections: Preventing Future Genetic Data Collection

Beyond deleting existing genetic data, protect yourself by avoiding future genetic data collection:

Avoid Direct-to-Consumer Genetic Testing - The only complete protection against DTC genetic database risks is not participating. If you've already taken tests, delete. If you haven't, don't.

Genetic Testing Through Healthcare Providers - If you need genetic testing for legitimate medical reasons, request it through your healthcare provider rather than direct-to-consumer companies. Healthcare provider genetic testing is covered under HIPAA and receives stronger legal protections.

Decline Genetic Data Sharing in Research - When healthcare providers offer genetic testing, they often ask permission to use your data for research. Explicitly decline. Even with de-identification, genetic data can often be re-identified, and you have no control over how research data is eventually used.

Monitor Family Members' Genetic Testing - If your relatives have submitted DNA to genetic databases, you're vulnerable to familial DNA matching. If you're aware of relatives' genetic testing, discuss the risks and consequences with them. Encourage them to delete genetic data if they're concerned about family privacy.

Genetic Privacy Documentation - If medical providers or insurers ask about genetic information, request specific details about:

• What genetic information they're requesting
• How they'll use it
• How long they'll retain it
• Whether they'll share it with third parties
• Your rights to access and delete it

Legal Protections and Regulatory Advocacy

Beyond individual actions, genetic privacy requires systemic change:

California's Consumer Alert - The California Attorney General has the authority to enforce privacy law violations against companies mishandling genetic data. If you believe a genetic company violates privacy laws, file complaints with the California Attorney General's office.

State Genetic Privacy Laws - Several states have implemented genetic-specific privacy protections:

• Indiana's HB 1521 (2025) requires genetic testing companies to implement security measures and allow data deletion
• Montana's SB 163 (2025) expands genetic privacy protections and neurotechnology privacy
• Texas HB 130 (Texas Genomic Act of 2025) prohibits sale of Texas residents' genetic data to foreign adversaries

Advocacy for similar laws in your state can provide additional protections.

Federal Legislation - The "Don't Sell My DNA Act" (proposed 2025) would require companies to obtain affirmative consent before selling genetic data in bankruptcy proceedings and mandate deletion of genetic information not subject to sales.

Supporting federal genetic privacy legislation is essential for systemic protection.

The DisappearMe.AI Genetic Privacy Solution

DisappearMe.AI recognizes that genetic privacy requires both individual action and institutional support. The platform addresses genetic privacy through:

Genetic Data Identification and Deletion

DisappearMe.AI's genetic privacy service includes:

• Audit of genetic exposure - Identification of where your genetic data exists (direct-to-consumer companies, research databases, and potentially compromised databases)
• Systematic deletion - Coordinated requests for deletion from all identified databases
• Biological sample destruction - Explicit requests for physical destruction of saliva samples or other biological material
• Verification of deletion - Confirmation that deletion requests were processed and data was removed

Continuous Monitoring for Genetic Data Re-Population

Like other data, genetic information can reappear in new databases through:

• New genetic testing you don't remember taking
• Family members' genetic testing creating familial records
• Breaches of existing genetic databases
• Sales of genetic data you didn't authorize

DisappearMe.AI provides:

• Quarterly genetic data scans across major genetic databases
• Alert notifications if your genetic information appears in new locations
• Automated re-deletion requests if data reappears
• Legal documentation of deletion efforts for potential future claims

Genetic Privacy Strategy Guidance

For individuals with complex genetic privacy concerns (previous genetic testing with unknown outcomes, family members' genetic testing, occupational genetic testing requirements), DisappearMe.AI provides:

• Genetic privacy risk assessment identifying specific threats to your genetic information
• Regulatory guidance on rights to deletion under GDPR, CCPA, state genetic privacy laws
• Insurance protection strategies to minimize genetic discrimination risk
• Family genetic privacy coordination helping relatives protect shared genetic information

Frequently Asked Questions

Q: If I delete my 23andMe data, will it still be sold to Regeneron?

Timing matters. If you delete your data before Regeneron's acquisition closes and takes over the database, your data should not be transferred. However, if deletion happens after the sale, your legal rights depend on Regeneron's privacy policies and whether they honor privacy commitments from predecessor companies. The safest approach: delete immediately if you have 23andMe data.

Q: Can police really access my DNA if a relative submitted it?

Yes, in most U.S. jurisdictions. Through familial DNA matching, if your genetic relative submitted DNA to a searchable database (especially GEDmatch), law enforcement can use it to identify you genetically and investigate you. You don't need to be a suspect; you're potentially visible simply because you're related to someone in a genetic database.

Q: Is deleting my genetic data from 23andMe enough?

Deletion from 23andMe addresses one source but not all. Your genetic data may exist in:

• Secondary databases (if you uploaded data to GEDmatch or similar sites)
• Research databases (if you consented to research participation)
• Breached databases (if prior breaches exposed your DNA)
• Healthcare provider systems (if your doctor ordered genetic testing)

Comprehensive genetic privacy deletion requires addressing all sources.

Q: How does life insurance genetic discrimination work if GINA prohibits it?

GINA prohibits health insurance companies from using genetic information. GINA does not cover life insurance companies. Therefore, life insurers can legally access genetic information and use it for underwriting decisions. This is one of GINA's major gaps.

Q: Should I avoid genetic testing entirely?

For healthy individuals without specific medical reasons for genetic testing, avoiding direct-to-consumer genetic testing eliminates significant privacy risks. If you need genetic testing for legitimate medical purposes, request it through your healthcare provider rather than direct-to-consumer companies. Healthcare provider genetic testing receives stronger HIPAA protections.

Q: Can I opt out of familial DNA matching?

If your relative submitted DNA to a database that allows police access (like GEDmatch), you cannot opt out of potential familial DNA matching through law enforcement. However, you can discourage relatives from uploading DNA to searchable databases and advocate for their privacy as well.

Q: What's the likelihood my genetic data will actually be misused?

Given that 23andMe data is being sold to a pharmaceutical company; that life insurers are interested in genetic data; that police are actively using genetic databases for investigations; and that regulatory protections are minimal, the probability of misuse is not speculative—it's documented and ongoing. The question isn't whether misuse might happen; it's how to minimize the damage when it does.

Q: Should I be concerned about Regeneron having my genetic data?

Yes. Regeneron is a pharmaceutical company with financial incentives to:

• Identify individuals most likely to benefit from expensive drugs
• Use genetic information to develop targeted treatments
• Market genetic-specific treatments to genetic-matched individuals
• Potentially share or sell genetic insights with insurers or other entities

These financial incentives don't align with your privacy or health interests.

Q: Can I get my data back after deletion?

Once deletion is processed and confirmed, you cannot retrieve your genetic data from the company. However, if you previously downloaded your raw genetic data from 23andMe or similar companies, you retain that file independently. Store downloaded genetic data securely and consider its implications before sharing with any third party.

Q: What does DisappearMe.AI actually do for genetic privacy?

DisappearMe.AI helps identify where your genetic data exists, systematically requests deletion from all databases, verifies deletion completion, monitors for re-population of genetic data, and provides ongoing legal documentation of deletion efforts. The service is designed specifically for genetic data, recognizing that genetic information requires specialized deletion procedures different from general personal data.

About DisappearMe.AI

DisappearMe.AI recognizes that genetic privacy is the frontier of privacy protection in 2025. While most privacy efforts focus on location data, browsing history, or financial records, genetic information represents something more fundamental: the biological blueprint of your existence.

Once your genetic information is exposed—sold in a bankruptcy auction, accessed by law enforcement, shared with pharmaceutical companies—it can never be un-known. Genetic data is immutable. You cannot change your DNA. You cannot hide your genetic vulnerabilities. You can only ensure that those vulnerabilities are not exposed to entities that will profit from weaponizing them.

DisappearMe.AI's genetic privacy service is designed for individuals who understand the stakes: your DNA is being treated as a commodity by companies and governments that profit from its exposure. The only way to protect yourself is to disappear your genetic information before it's sold, breached, or weaponized against you.

For the 15 million people whose genetic data 23andMe just sold: the time to act is now. Deletion doesn't reverse the sale that already happened, but it prevents your genetic information from being used in future transactions you don't authorize.

For everyone else: the time to prevent your genetic exposure is before you submit DNA to any direct-to-consumer genetic testing company. Understand the risks. Understand that regulatory protections are minimal. Understand that your genetic privacy is one of the most valuable and vulnerable pieces of information you can give away.

And if you decide to take a genetic test anyway, know exactly what you're giving up and have a plan to disappear that data before it disappears you.

References

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