By Ellie Halpert

Have you ever wondered about your biological makeup? Our DNA can tell us many things: our ancestry, predisposition to genetic diseases, intolerances, and more. Companies like 23andMe, AncestoryDNA, and MyHeritage offer genetic testing kits with great promises. Spit into a tube, ship it off, and they’ll tell you when the best time is for you to fall asleep, your ideal diet, and much more. However, like all good things, these DNA test kits come with a price, beyond the couple hundred dollars to buy them.

Genetic Privacy Laws

Genetic privacy is a complex and evolving area of law. While some current regulations exist to protect consumers, they often lag behind technological advancements. In the United States, the Genetic Information Nondiscrimination Act (GINA) prevents genetic discrimination in health insurance and employment. However, GINA doesn’t cover life, disability, or long-term care insurance, leaving gaps in protection. Additionally, these laws don’t sufficiently address the privacy risks associated with direct-to-consumer genetic testing.

Selling your Data

Even the Pentagon warns against these kits. According to Kernan, the Under Secretary of Defense for Intelligence, and Stewart, the Assistant Secretary of Defense for Manpower and Reserve Affairs, “There is increased concern in the scientific community that outside parties are exploiting the use of genetic data for questionable purposes, including mass surveillance and the ability to track individuals without their authorization or awareness.” These genetic testing companies are generally unregulated, creating the potential for them to sell or expose genetic information without the consumer’s knowledge. Defense leaders advise individuals to see a licensed genetic counselor if they have concerns requiring DNA testing.

Hackers

One of the scariest parts of giving your data to a company that will store it in their cloud, is that the cloud is not impenetrable. Hackers have various ways of getting past firewalls and stealing user passwords. When it comes to these DNA sites, hackers can learn a lot more about you than they can from your social media feed.

In October of 2023, 23andMe was hacked and the data of 6.9 million users was compromised. The hackers got into 14,000 profiles using passwords that were reused across sites, another reminder to generate unique passwords for all of your accounts. The stolen data included not just names and email addresses, but also sensitive genetic information, which could be used for identity theft, extortion, or other malicious purposes.

Potential Misuse of Genetic Data

The misuse of genetic data extends beyond the risk of hacking. The companies themselves may use your genetic information for research without your explicit consent, or worse, sell it to third parties. These third parties could include pharmaceutical companies, marketing firms, or even insurance companies looking to assess your risk factors. This commercialization of genetic data turns your most personal information into a marketable asset, often without your full understanding or agreement.

Lack of Professional Guidance

Direct-to-consumer genetic tests tend to lack the professional guidance that comes with medical genetic testing. Healthcare professionals are essential to helping you understand your results in the context of your overall health, family history, and lifestyle. They may also provide support in making decisions about genetic disease prevention or treatment options. Without this guidance, there lies opportunity for misunderstandings about the results, leading to potentially harmful decisions.

So Then What?

Private genetic testing offers fascinating insights into our biological makeup, but it comes with significant risks. Your genetic information is deeply personal and should be protected with the utmost care. The potential for data breaches, misuse of information, and lack of professional guidance makes these tests a risky choice for understanding your health and ancestry.

For those interested in genetic testing, it’s safer to go through a hospital or another well-protected health agency. These institutions are subject to stricter regulations and offer the necessary support to interpret and act on your genetic information responsibly. Remember, your DNA is not just a collection of data points; it’s the blueprint of your identity. Protect it wisely.

Conversation Starters:

  • Have you ever considered getting a genetic test done? What motivated or discouraged you?
  • How do you feel about the potential for companies to sell or misuse your genetic data?
  • In light of the 23andMe data breach, do you think companies can adequately protect sensitive genetic information?
  • Do you believe genetic testing should be more regulated by the government to protect consumer privacy? Why or why not?
  • How would you feel if your genetic information was used for research without your explicit consent?
  • What are your views on the potential for genetic data to be used by insurance companies to assess your risk?
  • Do you think people should seek professional medical guidance when interpreting their genetic test results? Why is this important?
  • How do you plan to balance the curiosity about your genetic makeup with the potential privacy and security risks involved in genetic testing?

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