Amy Klobuchar Questions 23andMe CEO on Data Deletion and Privacy During Bankruptcy

23andMe Data Deletion Backlog

• 💡 Senator Klobuchar inquired about the backlog for consumer requests to delete genetic data from 23andMe.
• ✅ Interim CEO Joseph Selsavage stated that there is currently no backlog and all deletion requests are being fulfilled.
• ⚠️ A significant increase in requests occurred during the bankruptcy filing, prompting the company to add staff to manage the volume.

Privacy Policies and Bankruptcy Sale

• 🔑 Both bidders in the bankruptcy sale, Regeneron and TTAM Research Institute, have agreed to adopt 23andMe's existing privacy policies.
• 🤝 This commitment ensures that consumers' rights to data deletion will be maintained after the sale is completed.

Consumer Consent for Data Usage

• 🔒 23andMe's policies require separate consents for customers to engage in research, both internally and with third parties.
• 🚫 The company does not default these options; customers must actively opt-in to allow their data to be used for research purposes.
• 📈 Consumers understand that this data is crucial for advancing research into diseases and developing life-saving treatments.

The Need for Comprehensive Privacy Legislation

• ⚖️ Professor Cohen emphasized the importance of requiring consumer consent before genetic data is sold to unrelated companies, likening it to a breach of trust.
• 💰 He believes that the right to control personal genetic information should take precedence over maximizing returns for creditors in bankruptcy.
• 🏛️ The discussion highlighted the inadequacy of current consumer privacy ombudsman systems in bankruptcy proceedings to fully protect sensitive data.
• 🌐 A comprehensive federal privacy law is needed for greater predictability for companies and to establish clear rules for data handling, both inside and outside of bankruptcy.