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