openSNP, a platform for sharing genetic and phenotypic data, will shut down on April 30, 2025 and delete all user submissions, due to concerns about privacy and the risk of misuse by authoritarian governments.
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The decision was announced earlier this week by co-founder Bastian Greshake Tzovaras, who expressed concerns about the misuse of personal genetic data today and how the landscape has radically changed over the past 14 years.
openSNP is a free and open-source platform where users can upload and share their genetic and phenotypic data for research and educational purposes. Its original goal was to make genetic data publicly accessible, breaking the monopoly of commercial DNA testing companies and allowing researchers or ordinary citizens to explore human genetic data without financial or institutional barriers.
Over the years, openSNP has grown into one of the largest repositories of its kind, used in research, education, and even public interest research, such as refuting flawed genetic studies for CFS.
Although it is not linked to 23andMe, the overwhelming majority of contributions it received came from users who had sequenced their genome through 23andMe. With 23andMe filing for bankruptcy, the flow of new data submitted to openSNP has essentially stopped, and Tzovaras does not expect this to change soon.
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The co-founder expressed concern that keeping openSNP data could compromise privacy, particularly as private forensics firms, law enforcement agencies, and governments have become increasingly aggressive in seeking access to such information based on pseudoscientific arguments.
openSNP is a rare example of how open source projects can operate successfully on a limited budget, as it has repeatedly rejected offers from companies to sell control of its data. However, the organization believes it is now too risky to continue, given the changing moral, political and social climate.
Therefore, the project will close at the end of the month and all user submissions will be deleted.
The announcement does not provide clear instructions for users to take actions such as deleting their data, so no manual action is required. However, those who wish to keep a copy of their own or other data for personal use have until April 30, 2025 to download it.
Notably, anyone who has already downloaded the data from openSNP has a copy forever, but removing the public, centralized source reduces the risks to privacy and future access through scraping.
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Genetic data sites refer to an online platform or database where genetic information (such as DNA sequences, genetic variants, or other genetic markers) is stored, analyzed, and shared. These sites are used for a variety of purposes, including research, ancestry tracing, health education, and genetic testing. These platforms use genetic data to gain insights into biology, health, disease, and ancestry, often contributing to a deeper understanding of genetics and its role in human health and history.
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Source: bleepingcomputer
