Stories with Tag DNA Testing

• How to Delete Your 23andMe Data

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  Posted: 2025-03-26 19:41:20

  Verbose tl;dr

  23andMe offers two data deletion options. "Account Closure" removes your profile and reports, disconnects you from DNA relatives, and prevents further participation in research. However, de-identified genetic data may be retained for internal research unless you specifically opt out. "Spit Kit Destruction" goes further, requiring contacting customer support to have your physical sample destroyed. While 23andMe claims anonymized data may still be used, they assert it can no longer be linked back to you. For the most comprehensive data removal, pursue both Account Closure and Spit Kit Destruction.

  This Electronic Frontier Foundation (EFF) guide, titled "How to Delete Your 23andMe Data," provides a comprehensive walkthrough of the process required to remove your genetic information and personal data from the 23andMe database. The guide emphasizes the importance of understanding the implications of genetic data sharing and the potential privacy risks involved before engaging with such services. It highlights 23andMe's complex data deletion procedures, which are not immediately obvious and require navigating through multiple webpages and confirmation steps.

  The EFF meticulously outlines two primary methods for initiating the deletion process: via the website's account settings and through direct email communication. For the website method, the guide provides a step-by-step breakdown, including screenshots to visually aid users in locating the correct options. This involves accessing the account settings, navigating to the privacy center, and selecting the desired data deletion options, distinguishing between the "Personal Information Removal" which deletes account details, and the more crucial "Genetic Information Removal" which purges the biological samples and associated genetic data. The guide further elaborates on the consequences of each choice, clarifying that personal information removal retains genetic data for research purposes unless explicitly removed, while genetic information removal permanently eliminates biological samples and derived genetic information.

  The alternative method, via email, is described as a fallback option for users encountering difficulties with the online procedure or preferring direct communication. The EFF provides a template email that individuals can adapt and send to 23andMe's customer support, explicitly requesting the deletion of both personal and genetic information. This email template includes specific language designed to ensure clarity and minimize ambiguity regarding the user's intent.

  Furthermore, the guide acknowledges the potential for residual anonymized data to remain within 23andMe's research datasets even after individual data deletion. It explains that while personally identifiable information is removed, aggregated and anonymized genetic data might still be utilized in ongoing research projects. The EFF underscores the importance of this distinction and encourages users to carefully consider these ramifications before submitting their genetic material to 23andMe or any similar service. Finally, the article reiterates the significance of data privacy and individual control over sensitive genetic information, advocating for informed decision-making when engaging with direct-to-consumer genetic testing services.

  • 23andMe
  • Data Privacy
  • Genetic Data
  • Data Deletion
  • privacy
  • Genetics
  • EFF
  • Electronic Frontier Foundation
  • consumer rights
  • Health Data
  • DNA Testing
  • bioethics
  • Data Security

  Summary of Comments ( 5 )
  https://news.ycombinator.com/item?id=43486236

  Verbose tl;dr

  HN commenters largely discuss the complexities of truly deleting genetic data. Several express skepticism that 23andMe or similar services can fully remove data, citing research collaborations, anonymized datasets, and the potential for data reconstruction. Some suggest more radical approaches like requesting physical sample destruction, while others debate the ethical implications of research using genetic data and the individual's right to control it. The difficulty of separating individual data from aggregated research sets is a recurring theme, with users acknowledging the potential benefits of research while still desiring greater control over their personal information. A few commenters also mention the potential for law enforcement access to such data and the implications for privacy.

  The Hacker News post "How to Delete Your 23andMe Data" has a moderate number of comments, discussing various aspects of genetic data privacy and the complexities of truly deleting such sensitive information.

  Several commenters express skepticism about the efficacy of 23andMe's deletion process, pointing out that true deletion of data is difficult, especially when it has potentially been used in aggregate analyses or shared with research partners. One commenter highlights the distinction between "individual data" and "aggregate data," suggesting that while 23andMe might remove individual identifiers, the underlying genetic information might still be retained and used in broader studies. This leads to a discussion about the inherent value of genetic data for research, and the ethical considerations surrounding its use.

  Some comments also mention the potential legal implications of data retention, particularly in light of law enforcement requests. One user points out that even if 23andMe deletes the data, they may still be compelled to provide it if legally required. This raises concerns about the security and privacy of genetic information, even after a user requests its deletion.

  A few commenters share their personal experiences with 23andMe's data deletion process, with varying degrees of satisfaction. Some report a smooth and straightforward experience, while others express frustration with the complexity or lack of clarity in the process.

  The conversation also touches upon the broader issue of data ownership and control in the digital age. One comment questions whether individuals truly "own" their genetic data, given the complexities of data sharing and analysis within the scientific and commercial landscape. This leads to a discussion about the need for clearer regulations and greater transparency regarding the use of personal data, particularly sensitive information like genetic data.

  Finally, some commenters mention alternative genetic testing services and their data privacy policies, offering a comparative perspective on how different companies handle user data. This provides a practical element to the discussion, allowing users to consider various options based on their individual privacy preferences.

• 23andMe Files for Bankruptcy, as CEO Anne Wojcicki Resigns

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  Posted: 2025-03-24 18:34:31

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  23andMe has filed for bankruptcy and CEO Anne Wojcicki has resigned. Facing declining demand for at-home DNA testing kits and a challenging market for drug development, the company struggled to turn a profit. The bankruptcy filing allows 23andMe to restructure its finances and potentially sell off assets, while Wojcicki's departure marks the end of her leadership at the company she co-founded.

  In a stunning and unforeseen turn of events that has sent shockwaves throughout the personalized genomics and biotechnology industries, 23andMe Holding Co., the renowned consumer genetics and research company headquartered in Sunnyvale, California, has filed for Chapter 11 bankruptcy protection. This momentous declaration, signaling a significant restructuring of the company's financial affairs and operations, was made public on a somber Friday, sending ripples of uncertainty through the market and raising questions about the future of direct-to-consumer genetic testing. Simultaneously, in a move seemingly connected to the bankruptcy filing, Anne Wojcicki, the long-standing Chief Executive Officer and co-founder of 23andMe, announced her resignation from the helm of the company she helped build into a household name. Ms. Wojcicki's departure marks the end of an era for the company, as her vision and leadership have been instrumental in its growth and development from a pioneering startup to a prominent player in the field of personal genomics. This dual announcement of bankruptcy and CEO resignation paints a complex picture of internal challenges and strategic shifts within 23andMe, leaving industry analysts and observers to speculate about the underlying factors that precipitated such drastic measures. The bankruptcy filing, a legal maneuver designed to allow the company to reorganize its debts and assets under the supervision of the bankruptcy court, suggests a significant financial strain on 23andMe's resources. While the specific details regarding the financial pressures leading to this decision remain somewhat opaque, the convergence of these two major announcements undeniably signifies a period of profound transition and uncertainty for the future of 23andMe and potentially the broader consumer genetic testing landscape. The reverberations of this news are likely to be felt across the biotech sector as investors and competitors alike grapple with the implications of 23andMe's dramatic restructuring.

  • 23andMe
  • Bankruptcy
  • Genetics
  • DNA Testing
  • Consumer Genomics
  • biotechnology
  • Anne Wojcicki
  • CEO Resignation
  • Business News
  • Wall Street Journal

  Summary of Comments ( 19 )
  https://news.ycombinator.com/item?id=43464054

  Verbose tl;dr

  Hacker News users reacted to 23andMe's bankruptcy announcement with skepticism, quickly identifying the article as satire published on April 1st. Several commenters expressed initial surprise before recognizing the date, while others pointed out the unrealistic nature of the claims, such as selling user data to CVS. Some found the satire weak, suggesting it wasn't particularly funny or clever. A few users discussed the actual business model of 23andMe, highlighting the shift from ancestry information to pharmaceutical research leveraging user data. One commenter noted the irony of the fictional bankruptcy coming shortly after 23andMe's actual recent layoffs.

  The Hacker News post titled "23andMe Files for Bankruptcy, as CEO Anne Wojcicki Resigns" (linking to a WSJ article claiming the same) sparked a significant discussion, with most commenters quickly identifying the article as an April Fool's Day prank. Several threads emerged, focusing on various aspects of the joke and its implications.

  A dominant theme was the believability (or lack thereof) of the prank. Some users initially fell for the joke, highlighting how the combination of a known company, a plausible scenario (given the struggles of at-home DNA testing market), and the timing made it initially convincing. Others immediately saw through the ruse, citing inconsistencies or simply the date as their reason for skepticism. The discussion delved into the ethics and effectiveness of April Fool's jokes in general, with opinions varying from appreciating a well-executed prank to criticizing the potential for misinformation and damage to trust.

  Several commenters pointed out the article's subtle clues, like the mention of a $4.20 stock price and the CEO allegedly starting a new company called "24andMe." These details, while seemingly insignificant, served as red flags for those familiar with internet humor and April Fool's traditions. The discussion touched upon the evolution of April Fool's pranks in the media landscape, noting how the internet has both amplified their reach and made them more easily detectable due to widespread awareness and quick fact-checking capabilities.

  A thread developed around the challenges faced by companies like 23andMe, with commenters discussing market saturation, privacy concerns, and the diminishing returns of DNA testing after the initial novelty wore off. This discussion, while prompted by the fake article, transitioned into a more serious analysis of the industry's landscape and the potential future for personalized genomics.

  Finally, some comments focused on the specific language and style of the WSJ article, analyzing how it mimicked genuine financial reporting, further enhancing the initial believability of the prank. This led to a discussion about the blurring lines between satire and real news, and the importance of media literacy in the age of misinformation. Some users expressed concern about the potential for such pranks to erode trust in legitimate news sources, especially when presented in a format resembling credible journalism.