23andMe is potentially selling more than just genetic data. The personal survey info is also a privacy problem.

Kayte Spector-Bagdady, an associate professor of obstetrics and gynecology at the University of Michigan, recently shared insights on the implications of genetic testing company 23andMe filing for bankruptcy. The news raised concerns about the fate of the vast amount of personal information stored in its genetic and health database. Following a U.S. judge’s ruling allowing the company to sell consumer data as part of the bankruptcy, several state attorneys general urged citizens to delete their genetic data. Highlighting the sensitivity of genetic information, Michigan’s attorney general emphasized the importance of protecting individuals’ genetic code.

When customers initially signed up for 23andMe, they agreed to terms and conditions that permitted the company to utilize their data for research and development purposes, as well as share it with third parties. Additionally, customers who consented to further research allowed their individual information to be shared with external parties. While 23andMe had been transparent about the possibility of data sale or transfer in cases of bankruptcy or asset sale, many customers were still taken aback by the recent developments.

As a lawyer and bioethicist specializing in direct-to-consumer genetic testing, Kayte Spector-Bagdady shed light on the nature of 23andMe and the data it collects. Founded in 2007, 23andMe quickly gained popularity in the genetic testing market, attracting millions of customers who consented to research studies. The company’s business model involved selling genetic testing kits to consumers and gathering extensive personal information beyond genetic data. Despite its peak valuation of $6 billion, 23andMe faced financial challenges and a decline in stock value due to factors such as a data breach in 2023 and limited profitability from data sharing agreements.

The type of data collected by 23andMe goes beyond genetic information obtained from saliva samples. With a majority of customers consenting to research participation, the company amassed a wealth of individual-level data from survey responses on various health and lifestyle factors. This comprehensive dataset, comprising genetic and personal information, holds significant privacy implications and potential value.

While 23andMe reassured customers of data protection during bankruptcy proceedings, concerns remain regarding the future use of stored information. Potential risks include law enforcement access to genetic data for investigative purposes and discriminatory practices based on health information. Moreover, the extensive personal information collected through surveys poses privacy risks, with the possibility of exploitation for targeted advertising or manipulation.

In light of these concerns, Spector-Bagdady advised caution in freely sharing personal information with private entities. The value of such data extends beyond individual use, raising ethical and privacy considerations. As she emphasized the need for data protection and privacy awareness, consumers are urged to evaluate the implications of sharing sensitive information with companies like 23andMe.

In conclusion, the evolving landscape of genetic testing and data privacy underscores the importance of informed consent and vigilance in safeguarding personal information. As the debate on genetic data privacy continues, individuals are encouraged to exercise caution and consider the implications of sharing sensitive data with commercial entities.