The Rise and Fall of 23andMe: The Future of Genetic Data in a Bankrupt World

Since its founding nearly two decades ago, 23andMe has risen as a trailblazer in biotechnology, growing into one of the largest companies offering direct-to-consumer genetic testing. Millions have used its simple saliva-based test to unlock personal insights about their ancestry, health risks, and even quirky traits such as cheek dimples and fear of public speaking. But today, 23andMe, once valued at billions of dollars, teeters on the brink of bankruptcy. With its fall comes uncertainty regarding the fate of the troves of genetic data it holds—raising critical concerns about privacy and security in the era of personalized genomics.

As medical students, doctors, and healthcare professionals, the implications of a company like 23andMe facing such turmoil are significant, especially in light of the rise of genetic medicine. What does this mean for the individuals who have shared their most personal genetic details with the company, and what lessons can we learn from the downfall of a Silicon Valley darling that once promised to revolutionize healthcare?

The Emergence of 23andMe: A Silicon Valley Fairytale
Founded in 2006 in California, 23andMe became a household name in the world of personal genomics. It wasn’t just the science behind DNA testing that made the company popular—it was its accessibility. The Personal Genome Service, which launched at an eye-watering price of US$999, was Time magazine’s Invention of the Year in 2008. By 2015, the cost of a test had plummeted to $79, opening the floodgates for global expansion. Millions of customers from across the world eagerly spit into tubes and mailed them back to 23andMe, awaiting their DNA analysis with excitement.

At its peak, the company amassed 14 million users, and its stock price soared after going public in 2021. At the heart of its appeal was the promise that genetics could empower individuals by providing deep insights into their health and heritage. For some, this meant discovering newfound relatives; for others, it meant learning about potential health risks, such as predisposition to Alzheimer’s or certain cancers.

But 23andMe’s growth wasn't without complications. Ethical questions quickly emerged. What happens when you uncover potentially devastating genetic news without a medical professional to help interpret the results? What if the family tree you thought was complete suddenly reveals unexpected branches?

The 23andMe Downfall: Data Breaches and Financial Turmoil
Fast forward to 2023, and the tech-fueled optimism surrounding 23andMe has evaporated. The company's value has plunged by over 97%, a significant data breach exposed the personal information of nearly seven million users, and it settled a class action lawsuit for US$30 million. Despite its prominence, 23andMe never turned a profit, and its future is uncertain. Reports suggest the original founder, Anne Wojcicki, is considering taking the company private once more, but with bankruptcy looming, the possibility of its vast stores of genetic data being sold off to the highest bidder is all too real.

For the millions of people who entrusted their DNA to 23andMe, this is a sobering development. The company has long assured its users that their data would never be shared without consent. Its privacy policies explicitly state that DNA data would not be shared with employers, insurance companies, or public databases unless the user agrees. Yet, if the company were to go bankrupt, this genetic treasure trove might become an asset up for sale. Even now, 23andMe's fine print suggests that customer data "may be accessed, sold, or transferred" in such cases.

This raises fundamental concerns: How secure is our genetic data? What rights do consumers have when it comes to controlling how their DNA is used? And how does this impact the future of genetic medicine and privacy?

The Power and Perils of Genetic Data
Direct-to-consumer genetic testing has exploded in popularity, creating a US$3 billion market by 2022. Companies like 23andMe, AncestryDNA, and MyHeritage hold the genetic data of nearly 50 million people globally. Smaller players like MapMyGenome in India and WeGene in China have also entered the scene, offering similar services.

While these companies have helped many people connect with lost relatives or understand their health risks, the potential downsides cannot be ignored. Genetic information is uniquely personal—it’s the blueprint of who we are. Yet, in the hands of for-profit companies, it can also be commodified, sold to pharmaceutical companies, used by law enforcement, or even exploited by hackers.

The risks aren't hypothetical. In 2020, law enforcement in the U.S. used at-home genetic tests to track down a murderer by identifying his family members. In 2023, hackers breached 23andMe's data systems, stealing ethnicity information from millions of users.

More troubling is the uncertainty surrounding data ownership. Even if a user deletes their 23andMe account, the company holds on to essential information like genetic data and date of birth for legal reasons. And if 23andMe is sold, customers may not have control over where their genetic information ends up.

Lessons for the Medical Community
For medical students and doctors, 23andMe's rise and fall provides crucial lessons. As healthcare professionals, we must remain aware of the ethical and privacy issues that surround personalized medicine and genetic data.

1. Data Security and Ownership: It’s essential to understand the legal and ethical frameworks that govern patient data—especially genetic information. As healthcare shifts toward precision medicine, the security of genetic data will be increasingly important.
   
   
2. Interpreting Genetic Results: DNA testing companies promise insight, but without proper context, genetic results can lead to confusion or even harm. Doctors should be prepared to counsel patients who receive unexpected or distressing genetic news.
   
   
3. Patient Privacy: With large-scale data breaches becoming more common, patients are right to be concerned about the security of their information. Healthcare professionals must be proactive in educating patients about their rights and the potential risks associated with sharing genetic data.
   
   
4. The Ethics of Genetic Testing: The commercial use of genetic data raises significant ethical questions. Companies may sell this data to pharmaceutical companies, and in some cases, it can even be accessed by law enforcement. Medical professionals must be aware of the potential uses (and abuses) of this data.
   

Navigating the Future of Genetic Testing
So, what can customers do to protect their genetic data in a world where companies like 23andMe may not be around forever? Experts suggest several steps:

1. Delete Your Account: If you're concerned about the security of your data, deleting your account with 23andMe is an option. This will prevent your sample from being used in future research, though it won’t erase any data already used in studies.
   
   
2. Be Informed Before Buying: It’s essential to understand what you're signing up for when purchasing a DNA test. Read the company’s privacy policies and terms of service carefully. Understand how long your sample will be stored and who can access your genetic information.
   
   
3. Seek Professional Guidance: If you're using genetic testing for health reasons, it’s always a good idea to consult a healthcare professional. They can help interpret your results and provide context.
   
   
4. Watch for Changes: If 23andMe or another genetic testing company is sold, pay close attention to changes in the privacy policies. Companies may give users the chance to opt-out of certain data-sharing practices.
   

A Cautionary Tale
The story of 23andMe serves as a cautionary tale for the medical community and consumers alike. Genetic data is powerful—it holds the key to understanding our ancestry, health risks, and more. But with great power comes great responsibility. Companies that collect and store such personal data must be held to the highest standards of privacy and security. As healthcare professionals, we have a duty to ensure that patients are informed and protected in this rapidly evolving landscape.