The founder of an open-source genetic database is closing it down and erasing all its data. He believes that keeping it running poses risks due to the rise of far-right and authoritarian governments in the U.S. and around the world.
Bastian Greshake Tzovaras, who started OpenSNP, mentioned in a blog post that the main use of direct-to-consumer genetic data has shifted away from medical research. Instead, it has been increasingly used by law enforcement agencies.
Over the past 14 years, OpenSNP has gathered around 7,500 genomes by letting people submit their genetic information from 23andMe.
With 23andMe facing bankruptcy and law enforcement showing more interest in such data, Greshake Tzovaras decided it was no longer ethical to maintain the database.
He has been contemplating this decision since 23andMe’s financial troubles began and has been particularly concerned since the last U.S. election. The situation in the U.S. feels troubling to him, and he feels relieved to have made this choice after much consideration.
While he takes pride in what OpenSNP has accomplished, he now views the deletion of its data as the most responsible action in a world where scientific information is being censored and marginalized, especially under the current political climate.
Although many users of OpenSNP may not face immediate danger, Greshake Tzovaras pointed out that vulnerable groups could be at risk.
He expressed concern about issues related to gender and sexual orientation, especially given the controversial research surrounding genetics and sexual identity.
In his blog, he highlighted his worries about DNA phenotyping, a questionable method that creates profiles of potential suspects based on DNA samples.
He labeled this practice as unreliable and noted that a startup had even approached OpenSNP to develop a product for law enforcement, which he firmly opposed.
Globally, there is a growing trend of far-right governments that suppress free societies and replace scientific reasoning with pseudoscience.
Greshake Tzovaras stated that the risks and benefits of providing open access to genetic data have changed significantly since OpenSNP began, making its closure and data deletion the most responsible choice today.
He acknowledged that it might seem contradictory to erase scientific data while the government is also removing data it disagrees with. However, he believes prioritizing people’s safety is more important than preserving data.
Greshake Tzovaras added that there are efforts in the U.S. to save scientific data from government deletion, but he sees this situation from a different perspective. Protecting the individuals in the database is crucial, and while he supports scientific knowledge, the safety of people takes precedence over data.
When he launched OpenSNP 14 years ago, he hoped it would enable significant medical advancements and support research. The database has contributed to various scientific studies, including one that debunked earlier findings about chronic fatigue syndrome based on 23andMe data.
Initially, he thought that making genetic data accessible would benefit everyone, regardless of their financial situation or background. He aimed to allow individuals to contribute to this open resource rather than having companies control access to the data.
Over time, he realized that while genetic research has potential, expecting it to lead to widespread improvements in health was overly optimistic.
He now believes that fundamental issues like food security and housing access are more critical for enhancing public health than focusing solely on genetic factors.
Greshake Tzovaras emphasized that while genetic research has yielded valuable insights, many countries still struggle with basic needs.
He pointed out that despite spending billions on genetic studies, the improvements in health outcomes are minimal compared to addressing essential issues like nutrition and housing.
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