Kristen V. Brown
The Atlantic
Originally published 27 Sept 24
23andMe is not doing well. Its stock is on the verge of being delisted. It shut down its in-house drug-development unit last month, only the latest in several rounds of layoffs. Last week, the entire board of directors quit, save for Anne Wojcicki, a co-founder and the company’s CEO. Amid this downward spiral, Wojcicki has said she’ll consider selling 23andMe—which means the DNA of 23andMe’s 15 million customers would be up for sale, too.
23andMe’s trove of genetic data might be its most valuable asset. For about two decades now, since human-genome analysis became quick and common, the A’s, C’s, G’s, and T’s of DNA have allowed long-lost relatives to connect, revealed family secrets, and helped police catch serial killers. Some people’s genomes contain clues to what’s making them sick, or even, occasionally, how their disease should be treated. For most of us, though, consumer tests don’t have much to offer beyond a snapshot of our ancestors’ roots and confirmation of the traits we already know about. (Yes, 23andMe, my eyes are blue.) 23andMe is floundering in part because it hasn’t managed to prove the value of collecting all that sensitive, personal information. And potential buyers may have very different ideas about how to use the company’s DNA data to raise the company’s bottom line. This should concern anyone who has used the service.
Here are some thoughts:
Privacy and Data Security
The potential sale of 23andMe, including its vast database of genetic information from 15 million customers, is deeply troubling from a privacy perspective. Genetic data is highly sensitive and personal, containing information not just about individuals but also their relatives. The fact that this data could change hands without clear protections or consent from customers is alarming.
Consent and Transparency
23andMe's privacy policies allow for changes in data usage terms, which means customers who provided DNA samples under one set of expectations may find their data used in ways they never anticipated or agreed to. This lack of long-term control over one's genetic information raises serious questions about informed consent.
Commercialization of Personal Health Data
The company's struggle to monetize its genetic database highlights the ethical challenges of commercializing personal health information. While genetic data can be valuable for medical research and drug development, using it primarily as a financial asset rather than for the benefit of individuals or public health is ethically questionable.
Regulatory Gaps
Unlike traditional healthcare providers, 23andMe is not bound by HIPAA regulations, leaving a significant gap in legal protections for this sensitive data. This regulatory vacuum underscores the need for updated laws that address the unique challenges posed by large-scale genetic databases.
Implications and Conclusion
The potential sale of 23andMe sets a concerning precedent for how genetic data might be treated in corporate transactions. It raises questions about the long-term security and use of personal genetic information, especially as our understanding of genetics and its applications in healthcare continue to evolve.
In conclusion, the 23andMe situation serves as a stark reminder of the complex ethical landscape surrounding genetic testing and data. It highlights the urgent need for stronger regulations, more transparent practices, and a broader societal discussion about the appropriate use and protection of genetic information.
