In recent years, direct-to-consumer genetic testing has exploded in popularity. Companies like 23andMe and AncestryDNA provide easy, affordable ways for people to have their DNA analyzed. With a quick saliva sample, you can unlock secrets about your ancestry, family history, and health risks. On the surface, this seems like a harmless way to satisfy curiosity about your genetic makeup. However, there are risks involved with sharing your DNA that consumers should consider carefully before using these services.
What can companies do with your DNA data?
When you pay to have your DNA analyzed by a private company, you are giving them rights to your most personal data imaginable. While some companies pledge to keep your information private, there are no guarantees. Your DNA contains an incredible amount of sensitive information about you and your family.
Here are some things companies can potentially do with your DNA data:
- Sell it – Genetic testing companies can sell your DNA data to third parties like pharmaceutical companies and research organizations. While names/other identifiers are typically removed, your genetic code itself remains.
- Share it with law enforcement – Police can request access to genetic databases to solve crimes using familial DNA searching.
- Use it for internal research – Companies can use your DNA for their own research purposes without your consent.
- Use it to target ads – DNA can reveal insights about your tastes and tendencies that companies can use for targeted marketing.
Once your DNA is in a private company’s database, you have very little control over how it is used and shared. Federal laws like GINA provide some regulation of how genetic data can be used by employers or insurance companies. However, privacy laws are still playing catch-up when it comes to protecting DNA data.
You’re giving away insights about your family too
It’s important to remember that your DNA does not just contain information about you – it holds insights about your familial connections. When you share your DNA, you are exposing sensitive information about your parents, siblings, children, and other relatives who may not have consented to having their genetic data shared.
Here are some ways your family’s privacy is impacted when you share genetic information:
- Exposing family secrets – DNA can unveil hidden truths about paternity, adoptions, and ancestry that your family may want kept private.
- Increased law enforcement access – Police can identify genetic relatives linked to crime scenes through shared databases.
- Revealing health risks – Genes can communicate inherited conditions passed through your family line.
- Enabling tracking – With enough DNA data from relatives, your family’s physical locations can theoretically be tracked.
As genetic databases grow, it becomes increasingly difficult for individuals to keep their DNA private when relatives are sharing their profiles. Before sharing your DNA, consider speaking with your family about potential privacy risks involved.
Your genetic data can be used against you
Beyond privacy issues, sharing DNA testing results can open you up to tangible harm if your information gets into the wrong hands. While there are laws to prevent genetic discrimination, loopholes still exist. DNA data can potentially be used against you in the following ways:
- Employment discrimination – Employers may make hiring/firing decisions based on health risks suggested in your genes.
- Insurance discrimination – Life, disability, and long-term care providers could deny coverage or raise rates based on genetic predispositions.
- Financial exploitation – Banks, lenders, or investors could use your genetic risks to unfairly deny you opportunities.
- Government surveillance – Law enforcement and immigration officials could potentially access DNA databases to profile and track people.
Discrimination based on genetic data is still illegal in many cases. However, without stronger protections, there are still scenarios where sharing DNA could cost you a job, coverage, or access to financial services. Consider whether these risks outweigh your curiosity before providing your DNA.
DNA testing has limitations
Beyond the privacy issues, it’s important to remember that direct-to-consumer DNA testing kits provide limited snapshots of your genetic makeup. Their analysis capabilities are relatively narrow for scientific and legal reasons. Here are some key limitations to note:
- Health reports lack context – DNA sites provide indicated risk levels for certain diseases, but cannot diagnose a condition.
- Ancestry results are estimates – Algorithms match portions of your genome to reference populations, but are not definitive.
- Data gaps exist – Not all genetic variants are known or tested for.
- Errors occur – Sample contamination and algorithmic mistakes can produce incorrect results.
Genetic science is still evolving. While DNA testing provides some interesting insights, the data should not be overinterpreted. Take any third-party DNA analysis as one data point, not the definitive assessment of your health or ancestry. Consult your doctor for proper health guidance.
DNA data breaches can happen
Genetic testing companies promise to keep your DNA data safe, but breaches can and do occur. Hackers and security flaws can expose genetic databases, just as with any other type of online data. Here are some examples:
- MyHeritage breach – 92 million accounts were compromised, including genetic data.
- Siren database breach – Exposed 800,000 records including genetic information.
- Yanhuang database breach – Exposed genetic data of millions of pregnant women in China.
These examples show that even large companies with security protocols can suffer breaches. Once your DNA data is leaked, there is no getting it back or preventing misuse. Are the upsides of DNA testing worth the privacy trade-off?
Think carefully before consenting
The key takeaway here is that providing your DNA to a private company is not a casual decision. You are handing over extremely sensitive data with few legal protections. While the analysis reports seem fun and harmless, your genetic code could potentially be used in many unintended ways without your consent. Here are some key considerations before agreeing to DNA testing:
- Read terms of service carefully – Understand exactly what rights you are relinquishing.
- Consider implications for family – Discuss with relatives before possibly exposing their data.
- Evaluate your privacy tolerance – Gauge your comfort level with possible data sharing.
- Think twice before submitting DNA from kids – Children can’t understand privacy risks.
- Review company track records – Research their history with data breaches before trusting them.
The convenience of mail-in DNA testing kits makes it easy to satisfy curiosity without weighing the long-term implications. But your genetic code is inherently valuable and private. Be an informed consumer and think carefully before sending your DNA off to a company – you can’t get it back once it is out of your hands.
Conclusion
Direct-to-consumer DNA testing offers intriguing glimpses into your ancestry, family history, and health risks based on genetic analysis. However, sharing your DNA has significant privacy risks that consumers should carefully consider upfront. Once you provide a sample, companies can potentially retain, share, or misuse your genetic data indefinitely without your consent. Your DNA provides sensitive insights about your health, family connections, ancestry, and more. While certain discrimination laws provide some protections, loopholes remain where your genetic information could be used against you. Given limitations of third-party DNA testing, the privacy trade-offs may not be worth uncovering a few interesting genetic tidbits about yourself and your family. Think carefully and have in-depth conversations with loved ones before sending your DNA away to a company. You have a fundamental right to keep your genetic code private.