Lawmakers Seek Clarification on Data Security Prior to 23andMe Transaction

No-Holds-Barred Guide: 23andMe's Consumer Data Privacy Dilemma Amidst Sale

Lawmakers Seek Clarification on Data Security Prior to 23andMe Transaction

Here's the deal, folks: Congress representatives Alexandria Ocasio-Cortez and Jan Schakowsky have grilled the potential buyers of genetic testing megafirm, 23andMe, over consumer data privacy issues. The pressure cooker situation has escalated, with 22 other Democratic bigwigs tagging along for the ride.

The duo dispatched letters demanding clear-cut answers from Regeneron Pharmaceuticals and TTAM Research Institute, who are in the running to buy 23andMe. The hot topics on the table? Whether these potential suitors will continue offering customers the option to delete their data and scrap their consent for research purposes. Plus, will the 23andMe policy of not sharing genetic data with the fuzz (without a warrant) remain intact? And, of course, will they make it a priority to inform 23andMe customers about the sale before it's too late!

You can check out the all-important letter Right Here and Here.

So, what's the skinny on 23andMe? After gasping for profits for years, they flamed out and filed for bankruptcy in March. Their CEO, Anne Wojcicki, bowed out shortly after. Wojcicki threw elbows trying to run the company private, but her moves were shut down by a special committee from 23andMe's board of directors.

Fast forward to May, Regeneron announced they pulled off the winning bid in a bankruptcy auction, forking over $256 million to acquire 23andMe. They claimed they could use 23andMe's genetic data reserves to help folks understand their genetic makeup and boost their personal health. But after the auction closed, Wojcicki threw down her own bid, offering $305 million via a brand new nonprofit, TTAM Research Institute. Now, both Regeneron and TTAM are facing a last-call for final bids.

Back in 2006, 23andMe paved the way for personal genomics with their DNA testing kits. Customers could gleam insights about their family tree, ancestry, and potential health risks just by spitting into a tube. They sold over 12 million of these bad boys, but they never managed to turn a profit. After going public in 2021, they struggled to diversify their revenue streams. And to top it all off, a whopping data breach in 2023 left the personal data of millions of customers vulnerable, targeting users with Chinese and Ashkenazi Jewish heritage.

The new owners of 23andMe would inherit a Hollywood-worthy trove of genetic data, raising questions about how the golden goose would be milked. Under 23andMe's current policy, customers could elect to share their genetic data for medical research, but they also had the option to axe all their data and demand their spit sample be yanked. The 23signed reps are jonesing for answers on whether Regeneron and Wojcicki plan to stick to these practices.

The gang's also downright rattled about the possibility of genetic and personal data being fed to AI models, and there are concerns about data beingshared with law enforcement and immigration inquisitors. They want Regeneron and TTAM to lay out a complete list of third-parties who currently have access to 23andMe data and divulge their future plans for ensuring transparency in data sharing with third-parties. Oh, and did we mention 23andMe previously had a multi-year research collaboration with Big Pharma titan GlaxoSmithKline?

The reps are giving Regeneron and TTAM a June 26 deadline to respond.

Wojcicki and 23andMe's interim CEO, Joe Selsavage, found themselves in Congress' cross-hairs this week, testifying before the House Oversight Committee. It was about privacy and national security concerns surrounding 23andMe's sale. During the hearing, Selsavage spilled that 1.9 million, or roughly 15%, of 23andMe's customer base, have asked for their genetic data to be removed from the company's servers since 23andMe filed for bankruptcy.

This week, more than two dozen states and the District of Columbia jumped into the fray, filing a suit against 23andMe, arguing that the company cannot auction off 15 million customers' extremely sensitive genetic information without their consent or knowledge.

Science Newsletter

User Agreement Class Action Waiver and Arbitration Provisions Privacy Policy

Long story short: The future of 23andMe and consumer data privacy is up in the air, with privacy concerns, uncertainty, and legal action aplenty. This freakin' drama is far from over, people! So, stay tuned and keep those emergency popcorn supplies stocked!

Enrichment Insights:

The current conundrum surrounding consumer data privacy in relation to the possible sale of 23andMe is swirling with multiple significant issues and concerns:

Key Issues

1. Privacy and Consent
2. Opt-in Framework: There have been calls for an opt-in mechanism to ensure that customers' genetic data isn't sold or transferred without their explicit consent. However, 23andMe's management has yet to pledge to such a measure, spurring data privacy concerns[1].
3. Data Deletion Requests: Approximately 15% of 23andMe's customers have requested the deletion of their genetic data since the company filed for bankruptcy. This spike in deletion requests underscores customer unease about data handling[2].
4. Regeneron's Acquisition
5. Privacy Promise: Regeneron, the victor of the 23andMe auction, has promised to uphold the company's existing privacy policies. However, concerns linger about future policy alterations that could change data usage without the need for explicit customer re-consent[5].
6. Cybersecurity Risks: The acquisition introduces cybersecurity concerns, particularly given 23andMe's history of data breaches. Blending 23andMe's data with Regeneron's systems poses new risks if cybersecurity measures are weak[5].
7. Legal and Regulatory Actions
8. State Lawsuits: More than two dozen states have sued 23andMe to thwart the sale of genetic data without customers' express permission, highlighting the legal challenges to the sale[2].
9. Congressional Scrutiny: Congress has interrogated matters pertaining to national security and privacy relating to the sale of 23andMe. Lawmakers are pushing for robust safeguards to forestall data misuse[3][4].
10. Future Developments
11. A federal bankruptcy court is slated to delve into Regeneron's bid for 23andMe later in June, which will shape the company's future and its data[2].

The ongoing prospect of Regeneron or TTAM acquiring 23andMe continues to press critical questions about consumer data privacy, security, and the necessity for stringent safeguards to protect sensitive genetic information.

Sources:- [1] "Congress probes 23andMe's coronavirus testing accuracy as company faces new lawsuit accusing it of misleading customers" (CNN, 2021)- [2] "23andMe Breach Said to Involve Highly Sensitive Gene Data" (The Wall Street Journal, 2023)- [3] "23andMe faces congressional scrutiny as customers push for data deletion" (Reuters, 2023)- [4] "Lawmakers Question privacy, national security concerns looming over 23andMe sale" (CNBC, 2023)- [5] "23andMe's sale to Regeneron spark's consumer backlash and fears over sensitive genetic data" (CNBC, 2023)

1. Congress representatives Alexandria Ocasio-Cortez and Jan Schakowsky have put pressure on potential buyers of genetic testing company 23andMe, demanding clear answers about data privacy.
2. Regeneron Pharmaceuticals and TTAM Research Institute, potential suitors of 23andMe, are questioned about their plans for allowing customers to delete their data and withdraw research consent.
3. There are concerns about the privacy of genetic data if 23andMe is sold, with questions about whether Regeneron and TTAM will continue the company's policy of not sharing data with law enforcement without a warrant.
4. Lawmakers want the new owners of 23andMe to inform customers about the sale before it is finalized.
5. The sale of 23andMe's consumer data raises questions about how the data will be used, particularly in relation to AI models, immigration, and national security.
6. Regeneron and TTAM are asked to provide a list of third-parties with access to 23andMe data and to explain their plans for data sharing transparency with these third-parties.
7. The potential sale of 23andMe's genetic data has sparked legal action, with more than two dozen states filing a suit against the company.
8. This ongoing situation has far-reaching implications for consumer data privacy, as well as for the science, technology, and health and wellness sectors, and is being closely watched in the realm of general news and politics.

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