OpenSNP is an open-access genetic database created in 2011 by Bastain Tzoravas, Philipp Bayer, and Helge Rausch. Its data was crowdsourced - they asked people to send in their results from genetic tests (23AndMe, for example) along with phenotypic data (details about them that could be observed).
At the time, access to genetic data was limited to genetic testing labs (again, like 23AndMe), and anyone with deep enough pockets (mostly pharmaceutical companies) to buy access to the data. The creators of OpenSNP wanted to open up access to genetic data to everyone, while also allowing individuals the choice whether to be part of the database. They believed that this database could be a driver of progress in improving human health.
They were successful, too, becoming one of the largest open-access genetic databases. This led to the database being used for multiple academic and research efforts. One example was the attempt to replicate a study on genetic origins of Chronic Fatigue Syndrome. People struggling with CFS were surprised at the strong correlation published in the original study, and one of them approached Bastian to see if the data in OpenSNP could be used to replicate the study. The replication effort was able to show that the results of the original study were little more than a data artefact.
Bastian is also proud of being able to keep the project independent. They resisted buyout offers from venture capital, pharmaceutical companies, and even forensics companies, honouring their promise to never sell the platform or the data. They were able to shoulder the costs of running the project through a mix of self-financing, crowdfunding via Patreon, and grant money and sponsorships. They could stretch every euro because they stayed self-hosted, running on cheap virtual servers with a predictable cost. This way, they never had to play nice with problematic funders, who could use the threat of withdrawing funding to coerce them into acting against their principles.
Despite the success, both in independence and impact, Bastian has come to believe that he overestimated OpenSNP's ability to play a part in improving public health. Social factors like nutrition and housing play a larger role in most health issues than genetic factors do. Looking for genetic causes of diseases that are rooted in social and environmental factors is a waste of time and effort.
Additionally, 23AndMe has filed for bankruptcy, taking down one of the largest sources of data that goes into OpenSNP. All the data that 23AndMe has gathered is now up for auction to the highest bidder.
But the largest change in circumstances since 2011 is that the biggest use for genetic data is not health - it is in law enforcement.
GEDMatch is another crowdfunded database where users can upload their genetic test results and family trees. Users can then search for blood-relatives on the database, which was intended to be helpful for genealogists, and for adopted children looking for their birth parents.
It has since been acquired by a forensic company, and is used by law enforcement to compare DNA found at crime scenes with that of volunteer contributors - even if the contributors opted out of such comparisons. The results could be used to narrow down the list of suspects to those within a family.
Parabon NanoLabs is another forensic company that provides DNA phenotyping to law enforcement - the (pseudoscientific) process of predicting a person's physical appearance from their DNA.
With the rise in authoritarian governments across the globe, many of them replacing scientific experts with crackpots that give credence to the bigoted pseudoscientific theories of those in power, as well teh rise in companies abusing digital common infrastructure, Bastian believes the most responsible thing to do is to take down the server and delete the database.
Will someone host a copy of the database somewhere? Sure. Will the pages of history read that Bastian continued to be a part of it? No.