23andMe is potentially selling more than just genetic data – the personal survey info it collected is just as much a privacy problem
by Kayte Spector-Bagdady
The Conversations, April 2, 2025
Excerpt…
What kind of data does 23andMe collect?
While the saying goes “If you’re not paying, you’re the product,” 23andMe managed to convince its consumers to both pay for AND be the product. It did this by selling genetic testing kits to consumers as well as collecting a massive amount of their valuable data.
And 23andMe collected more than just genetic data generated from consumers’ spit. Eighty-five percent of customers consented to 23andMe research, allowing their individual-level data to be used for studies. The company then collected information from survey questions about their personal health and beyond, such as drinking habits and risk tolerance.
This means that not only does 23andMe possess the genetic data of 15 million people, but it also possesses almost a billion additional data points associated with this genetic information. This makes the 23andMe dataset potentially very private – and very valuable.
At first, drug companies seemed to agree. For example, in 2018, 23andMe granted pharmaceutical company GlaxoSmithKline an exclusive license to use consented customer data to develop new drugs. GlaxoSmithKline also made a $300 million equity investment in 23andMe. When 23andMe went public in 2021, its $6 billion valuation reflected the promise of this business model.
But for over a decade, scholars, including me, have been warning that allowing 23andMe to collect and use personal data was not one that customers fully understood, or were actually comfortable with.
Continues…
https://theconversation.com/23andme-is-potentially-selling-more-than-just-genetic-data-the-personal-survey-info-it-collected-is-just-as-much-a-privacy-problem-253220
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