TechCrunch News 04月02日 01:12
Genetic sharing site openSNP to shut down, citing concerns of data privacy and ‘rise in authoritarian governments’
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OpenSNP,一个大型的开放基因数据存储库,由于对数据隐私的担忧,特别是考虑到23andMe的财务困境和全球威权政府的崛起,将于4月底关闭并删除所有数据。创始人Bastian Greshake Tzovaras强调,关闭的决定反映了对用户基因数据潜在滥用的担忧,以及对科学机构和科学本身受到侵蚀的担忧。OpenSNP自2011年成立以来,一直致力于促进学术研究,但如今,数据安全风险已超过其带来的好处。该决定也受到了美国政治环境变化的影响,以及对未来可能出现的基因数据滥用的担忧。

🚫 关停原因:OpenSNP关闭的主要原因是数据隐私问题,尤其是在23andMe破产和全球威权政府兴起的大背景下。创始人Bastian Greshake Tzovaras认为,开放基因数据在当前环境下的风险已超过其价值。

🏛️ 影响因素:关闭决定也受到美国政治环境变化的影响,例如对科学机构和科学本身受到侵蚀的担忧。Tzovaras提到了第二届特朗普政府上任后“科学机构和科学本身被大规模瓦解”的情况,这促使他关闭OpenSNP。

🔬 历史贡献:OpenSNP自2011年成立以来,一直是学术研究的重要资源,为超过7500个基因组提供了数据。它促进了信息安全、隐私以及生物医学研究等多个学科的发展,并帮助了许多本科生获取真实世界的数据。

⚠️ 数据安全担忧:Tzovaras担心基因数据可能被滥用,用于制造关于各种主题的虚假声明,从而可能导致“黑暗的优生学时代”的回归。他认为,与之前的政府相比,当前政府对科学的滥用在质量和数量上都有所不同。

OpenSNP, a large open source repository for user-uploaded genetic data, will shut down and delete all of its data at the end of April, co-founder Bastian Greshake Tzovaras has confirmed.

In a blog post, openSNP Tzovaras attributed the decision to shutter the site due to concerns of data privacy following the financial collapse of 23andMe and the rise in authoritarian governments around the world.

Founded in 2011 by Tzovaras, along with Philipp Bayer and Helge Rausch, openSNP became an open and public repository for customers of commercial genetic testing kits, including 23andMe, to upload their test results and find others with similar genetic variations. The site had close to 13,000 users at the time of its closure announcement, making it one of the largest public repositories of genetic data. Since its founding, openSNP has touted its contributions to academic and scientific research, and identified more than 7,500 genomes.

News of openSNP’s shutdown comes in the wake of 23andMe filing for bankruptcy protection, intensifying concerns that the company’s vast banks of customers’ sensitive genetic data will be sold to the highest bidder, who may not adhere to 23andMe’s privacy commitments. The attorneys general for the states of California and New York, among others, have warned 23andMe customers to delete their data ahead of the court-approved selloff later this year.

Tzovaras also said a contributing factor in shutting down openSNP was the “rise in far-right and other authoritarian governments,” citing the removal of public data from the U.S. government’s websites soon after President Trump returned to power.

“The risk/benefit calculus of providing free and open access to individual genetic data in 2025 is very different compared to 14 years ago,” wrote Tzovaras. “Sunsetting openSNP — along with deleting the data stored within it — feels like it is the most responsible act of stewardship for these data today.”

When reached by TechCrunch, Tzovaras was blunt in his decision to shut down openSNP now and not sooner. 

“The ‘why now’ to me is ultimately down to there being what counts for a fascist coup in the U.S.,” Tzovaras told TechCrunch, a native of Germany. 

“Seeing people being disappeared from the streets under the most dubious pretexts really can’t be called anything else,” Tzovaras said, referring to the recent reports of people living in the United States, including U.S. citizens, who have been arrested in immigration raids, some of whom whose whereabouts remain unknown

Tzovaras said the “wholesale dismantling of scientific institutions and science itself” since January — the beginning of the second Trump administration — was a factor in the shutdown of openSNP. 

“I don’t think it’s a stretch to worry about how genetic data might be soon abused to make false claims about a variety of topics, effectively bringing back a darker eugenics age,” said Tzovaras.

Tzovaras said openSNP has “always been a balancing act” between its potential uses and risks, and that the site’s existence has been an “ongoing thought of whether the benefits can outweigh the risks.” 

In one historical example he gave — when law enforcement used genetic data from genealogy site GEDmatch in 2018 to identify a notorious serial killer — Tzovaras said openSNP seemed at the time like it was less relevant or at risk for use by law enforcement compared to larger ancestry-specific databases. (Tzovaras confirmed to TechCrunch that notwithstanding the open and public nature of the data it stores, openSNP has never received a law enforcement request for any genetic or user data.)

Tzovaras said that compared to the first Trump administration, “the misuse of science was both qualitatively and quantitatively very different than what we see today.”

“Alongside the larger conversation about the impact of genetic data in the context of 23andMe’s bankruptcy, we decided that it’s time to pull the plug,” Tzovaras told TechCrunch.

Tzovaras told TechCrunch that on a positive reflection, keeping openSNP running for 14 years may be his “biggest achievement.” He said openSNP ran on about $100 per month, in the face of commercial startups that have worked to monetize people’s data yet ultimately failed. Tzovaras said that in that sense, openSNP “feels like a testament to the power of open source/culture.”

The site has also contributed to research and publications “across a wide range of disciplines — from infosec/privacy all the way to biomedical studies,” said Tzovaras. Many undergraduates also benefited from having access to real-world data hosted by openSNP, he said.

“In that sense, I think our hope of ‘democratizing’ access to genomics was at least partially successful,” said Tzovaras.

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OpenSNP 基因数据 数据隐私 23andMe 数据安全
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