23andMe vast trove of personal survey data on sale alongside DNA data
02/04/2025 | The Conversation
Shortly after the announcement in March 2025 that 23andMe had filed for bankruptcy, a US judge approved the sale of its consumer data as part of the bankruptcy proceedings.
Customers who signed up for 23andMe agreed to terms allowing their data to be used for research and to be shared, in aggregate, with third parties. Around 85% of 23andMe customers agreed to additional research.
The company's database contains genetic data from 15 million individuals, alongside a vast array of associated personal information collected through surveys, including health details, lifestyle habits, and risk tolerance. This combination of genetic and personal data, totalling almost a billion data points, makes the dataset highly sensitive and valuable.
The article highlights that pharmaceutical companies initially recognised this value, partnering with 23andMe for drug development and investing heavily in the company. However, experts have long warned about the privacy risks associated with 23andMe's data collection practices. In addition, they question whether customers fully understood or were comfortable with the implications.
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