DNA for sale | The hidden risks of your home genetic testing kit

The promise is tantalizing. For the price of a dinner out, a simple saliva sample can unlock the secrets of your ancestry, reveal distant relatives, and even flag potential health risks hidden deep within your cells. Home genetic testing kits from companies like 23andMe and AncestryDNA have exploded in popularity, marketed as a fun and empowering way to understand yourself better. But as millions of us mail our most intimate biological information to private labs, a critical question arises: what happens next? The journey of your DNA doesn’t end with your personalized report. It’s just the beginning of its life as a valuable commodity, and the price you pay might be far greater than the cost of the kit itself.

What happens to your DNA after you mail the kit?

When you seal that little tube and drop it in the mail, you’re sending more than just saliva; you’re sending the blueprint of who you are. Once it arrives at the lab, technicians extract your DNA from your cells. This physical material is then converted into digital data through a process called genotyping, which identifies specific genetic markers. This digital file, a long string of As, Ts, Cs, and Gs, is what the company uses to generate your ancestry and health reports.

But what about after you get your results? Two things happen:

• Physical Sample Storage: Many companies will store your physical saliva sample in a biobank for years, unless you specifically request its destruction. Their terms of service often state this is for quality control or future testing opportunities.
• Digital Data Storage: Your genetic data is stored indefinitely on the company’s servers. This is your genetic code, digitized and cataloged in a massive database alongside millions of other people. This database is the company’s most valuable asset.

Understanding this is the first step to grasping the hidden risks. Your DNA is no longer just yours; it’s a physical and digital asset held by a for-profit corporation.

The fine print: who owns your genetic data?

This is where things get complicated. If you brave the dense legal jargon of the terms of service, you’ll likely find a clause that says you retain ownership of your DNA. This sounds reassuring, but it’s the next part that matters. By agreeing to the terms, you almost always grant the company a broad, royalty-free, worldwide, perpetual license to use your anonymized genetic data.

What does “anonymized” or “de-identified” mean? It means they remove your name, address, and other direct identifiers. However, researchers have repeatedly shown that re-identifying individuals from “anonymized” genetic data is surprisingly easy, especially when cross-referenced with other publicly available information like age, state of residence, or public genealogy records. The promise of anonymity is fragile. You may technically “own” your data, but you’ve given the company powerful and permanent rights to use, analyze, and profit from it.

Your DNA, their database: the risk of third-party sharing

Why is a massive database of genetic information so valuable? Because other companies are willing to pay a fortune for it. The primary customers are pharmaceutical and biotech firms who use this data for drug research and development. This is the “DNA for sale” reality.

For example, 23andMe entered into a $300 million partnership with pharmaceutical giant GlaxoSmithKline, giving GSK access to its customers’ genetic data for research. While the goal might be noble—to cure diseases—it means your most personal information is being transferred and used by a third party, subject to their own data security and privacy policies.

It’s not just corporate partners. Law enforcement has also gained access to these genetic databases. While they typically use public, open-source genealogy sites, the precedent is set. Investigators have famously used relatives’ DNA from these databases to identify suspects like the Golden State Killer. While this leads to justice, it also means your genetic information could be used to implicate a family member, all without your direct consent or knowledge.

Beyond privacy: the potential for genetic discrimination

Perhaps the most tangible risk is the potential for genetic discrimination. Imagine your genetic report reveals a high predisposition for Alzheimer’s or Parkinson’s disease. What if that information fell into the wrong hands?

In the United States, the Genetic Information Nondiscrimination Act (GINA) offers some protection. It makes it illegal for health insurers and employers to discriminate against you based on your genetic information. However, GINA’s protections have significant gaps. It does not apply to:

• Life insurance
• Disability insurance
• Long-term care insurance

This means an insurer could legally deny you a policy or charge you exorbitant rates based on a genetic predisposition discovered through a home testing kit. A data breach or a change in a company’s privacy policy could expose you to very real financial consequences decades down the line. The curiosity of today could lead to the uninsurability of tomorrow.

Conclusion

The journey from spitting in a tube to discovering your heritage is a modern marvel. But it’s a journey fraught with hidden costs. Once you send your DNA away, it’s transformed from a personal blueprint into a corporate asset. You grant broad licenses for its use, exposing it to third-party pharmaceutical companies and law enforcement, often with only a thin veil of anonymity to protect you. More frighteningly, the discovery of a genetic predisposition could leave you vulnerable to discrimination by life, disability, or long-term care insurers, a risk not covered by current laws. Before you unlock the secrets of your DNA, it’s crucial to understand who else gets a key. The decision is ultimately personal, but it should be made with full awareness of the irreversible risks.

Image by: Scott Webb
https://www.pexels.com/@scottwebb