🧑⚖️🧬💰🤝 Judge OKs sale of 23andMe - and its trove of DNA data - to a nonprofit led by its founder
🤖 AI Summary
⚖️ A bankruptcy judge has approved the sale of 23andMe for 💰 $305 million to TTAM Research Group, led by former CEO and co-founder 👩🔬 Anne Wojcicki.
🤝 The new buyer, TTAM Research Group, is a nonprofit that will continue the company’s mission of 🧬 understanding the human genome for the public good.
✅ TTAM has committed to abiding by existing privacy policies, 🛡️ implementing further protections and privacy safeguards, and 📧 notifying customers in advance of the deal’s closure.
🧑⚖️ A consumer privacy board will be established within 90 days of the deal’s closure, and 🔒 new privacy procedures will be adopted, including notifying customers of material changes, mitigating data breaches, and submitting annual reports to state attorneys general if required.
💳 Customers will also be offered two years of complimentary identity theft monitoring services.
🏛️ Prior to the sale, 27 states and the District of Columbia filed a lawsuit in bankruptcy court to block the sale of personal genetic data without customer consent, arguing that 🩸 biological samples, DNA data, health-related traits, and medical records are too sensitive to be sold without explicit, informed consent.
🚨 There were previous privacy issues, including a 💻 hack in 2023 that exposed the personal data of nearly 7 million 23andMe customers over a five-month period.
⚙️ 23andMe was found to have failed to implement appropriate controls for accessing raw genetic data and had ineffective systems for monitoring, detecting, and responding to cyber threats.
📜 The company’s privacy policy stated that it would not sell, lease, or rent individual-level information to a third party for research purposes without explicit consent, but state attorneys general argue consent for sale was not obtained.
⚕️ HIPAA (Health Insurance Portability and Accountability Act) does not cover genetic data collected by direct-to-consumer genetic testing companies.
📚 Book Recommendations
📖 Genetic Literacy in Direct-to-Consumer Genetic Testing: A Discursive Approach to Public Engagement with Genetic Science by Lulu Luo, which examines language and communication in direct-to-consumer genetic testing, focusing on public engagement and societal shifts.
📖 Privacy Best Practices for Direct-to-Consumer Genetic Testing Services (Chapter 19) in Consumer Genetic Technologies which provides an in-depth analysis of privacy practices in the direct-to-consumer genetic testing industry.
📖 The Gene: An Intimate History by Siddhartha Mukherjee, which presents a history of gene science and examines current debates about gene resequencing.
📖 Genome: The Autobiography of a Species in 23 Chapters by Matt Ridley, an engaging read about the human genome.
📖 An Owner’s Guide to the Human Genome: An Introduction to Human Population Genetics, Variation and Disease by Jonathan Pritchard, covering genetic variation, human history, and the role of genetics in human phenotypes and diseases.
📖 The Social Life of DNA by Alondra Nelson, which explores how genetic genealogy is used to address issues related to race and heritage.
📜🌍👥 A Brief History of Everyone Who Ever Lived by Adam Rutherford, revealing what genes can tell us about history and how unraveling the human genome has challenged beliefs about identity.
📖 The Human Genome: Mapping the Blueprint of Human Life by Carla Mooney, an accessible book for ages 12-15 on how genes work, DNA structure, and genetic inheritance.