23 is Watching Me

DNA for Delivery

So what would you do if a corporation knew your future health risks, family history, physical traits, and even susceptibility to certain behaviors? And what if they could take that information and sell it to the highest bidder? Well, let me introduce you to 23andMe. It’s a corporation that takes the idea that you can send in a DNA swab and they will use that information to trace your family history. This type of testing is called direct-to-consumer DNA testing. Users send in their saliva and receive ancestry data and health predispositions. But the issue is that data is stored, analyzed, and shared technically with consent, but often hidden in fine print that most people do not fully understand. The California Consumer Privacy Act classifies genetic data as “sensitive personal information alongside data such as race, ethnicity, Social Security numbers, phone numbers, or address.” That puts the 23andMe in a unique position to share or sell that information to pharmaceutical companies and other corporations that are interested in the DNA and family lineage of the population.

Did You Read the Fine Print?

There have been multiple reports of individuals submitting their DNA to different companies and receiving conflicting results. A study from ASCLS “identified that 40% of all DTC genetic test abnormal results were false positives.” That alone raises questions about how reliable this information really is. On top of that, this data is not heavily regulated. The FDA and HIPAA do not fully apply to the direct-to-consumer testing industry. Instead, the government relies on the Federal Trade Commission to oversee data protection, but there has been limited regulation, allowing companies to largely self-regulate their privacy practices. Which sounds fine in theory, but not so much in practice. A 2018 survey revealed that” over 40% of companies did not even have documentation explaining how they protect genetic data.”At the same time, when people click “agree,” they are not fully understanding future data use or third-party partnerships. So while it looks like informed consent, it’s not always truly informed. This matters because genetic data doesn’t just reveal information about you but it also reveals information about your family members and even entire populations.

Tyrell-esc

In Blade Runner, the Tyrell Corporation manufactures humans and controls their identity and lifespan. While 23andMe doesn’t create humans, it helps to map and therefore monetize them on a biological level. In both cases, corporations gain power over what defines a human being. This parallel becomes even more concerning when considering how that data can be used. In Blade Runner, replicants are tracked and controlled because their creators hold complete knowledge over their biological makeup. Similarly, when a company holds detailed genetic data, it gains a form of informational control that can influence healthcare decisions, research, and future technologies. Looking at this globally, the United States allows for more corporate freedom and weaker data protections. In contrast, the European Union has stricter privacy laws and stronger consent requirements. This shows that the issue isn’t just American, but it’s globally unevenly regulated. There should be a more standardized system for handling genetic information that doesn’t vary so drastically from country to country. I would argue that we are already entering an early cyberpunk future. Corporations don’t need to dominate physically anymore, they gain power through data ownership. Recently, 23andMe filed for bankruptcy and was bought by a pharmaceutical company. This means that a pharmaceutical company could potentially gain access to large amounts of genetic, health, and family data from users. Even though there are claims that protections will be put in place, history shows that these safeguards are often not enough.

Wake Up People!

This matters for several reasons. First, there are serious medical implications. The unreliability of DTC testing, especially the high rate of false positives, raises concerns about how this data could be used to inform decisions made by pharmaceutical companies. Second, it impacts trust in healthcare and laboratory science. If people rely on private companies for genetic testing and pharmaceutical companies act on that data, it raises a bigger question of where healthcare professionals fit into patient care? At the end of the day, we have to think about who controls biological data. Right now, it is largely controlled by private corporations and pharmaceutical companies. This type of data should be more heavily regulated and ethically managed. Because the future of humanity might not be controlled by those who create life, but by those who own the code of it.

AI Attestation

The AI CHATGPT was utilized to help brainstorm ideas, organize the outline, and revise writing for clarity, grammar, and flow. https://chatgpt.com/share/69efe626-9200-83ea-a765-1e8c72ff87b9

References

Allyse, M. (2013). 23 and Me, We, and You: direct-to-consumer genetics, intellectual property, and informed consent. Trends in Biotechnology, 31(2), 68–69. https://doi.org/10.1016/j.tibtech.2012.11.007 Gunsolus, B. (2019, May 29). IMPLICATIONS OF DIRECT-TO-CONSUMER GENETIC TESTING - ASCLS. ASCLS. https://ascls.org/implications-of-direct-to-consumer-genetic-testing/ Jamali, L. (2025, May 19). Struggling DNA testing firm 23andMe to be bought for $256m. BBC. https://www.bbc.com/news/articles/c0ln0e5g6kgoPustell , E. (2021, July 19). The Onero Institute. The Onero Institute.https://www.oneroinstitute.org/content/genetic-data-protections-in-the-us-and-eu