OpenSNP
From Wikipedia, the free encyclopedia
 The logo of the openSNP project | |
Type of site | Genetic Database |
|---|---|
| Dissolved | April 30, 2025 |
| Founder | Bastian Greshake |
| URL | opensnp |
| Commercial | No |
| Launched | September 28, 2011 |
Content license | Creative Commons 0 |
openSNP was an open source website where users could share their genetic information.[1] On 31 March 2025 the owners announced that the site would close permanently on 30 April 2025, citing the causes as the bankruptcy of DNA testing company 23andMe, and public fears of DNA misuse.[2]
Users could upload their genes, including gender, age, eye color, medical history, Fitbit data. With a focus on user patient-led research (PLR), there was hope it could redefine the way health research is conducted.
"It promises to be a vital supplement to standard research: it can focus on conditions that are neglected by standard research, such as rare diseases or side effects, and can draw on a broader range of data and deliver outcomes more rapidly. It can also be a way of realising valuable forms of social interaction and support in cases where members of a community conduct PLR together, for example, patients suffering from the same illness."[3]
The name of the project was inspired by single nucleotide polymorphism (SNP), which is a DNA variation at a specific location on a strand. Scientists have discovered that there is a correlation between certain SNPs and genetic predispositions such as Mendelian disease.[4]
The data of the project is licensed under Creative Commons 0,[1] while the code of the website itself is hosted on GitHub under the MIT License.[5]
Since openSNP was an open-sourced social network that was readily available on the internet, there were questions raised surrounding privacy issues and other risks.[6] Though the sign-up page warned potential users of the record lasting forever, participants had to decide for themselves whether the benefits outweighed the pitfalls. As health research continues to progress, more and more scientific analysis places a greater role on PLR, leading to increased demands for a new social contract to secure conditions for participants.[3] Human participant research not only places subjects into potentially harmful situations, but also can lead to other risks such as exploitation and self-experimentation under non-controlled environments. There is also the risk of biases and distortions "arising from self-reporting and self-collected data". However, during the project's lifetime, the effects of genetic discrimination were unknown due to the lack of evidence.[7]
"Till date no systematic evaluation of the true value of anonymity with respect to the cost of genome information and insight has been assessed in real-life settings. This would require appropriate availability of information including caveats to whole genome assessment and analysis"[8]
Still, with the rise of open genomic research, privacy protection frameworks need strengthened efforts beyond "traditional legal and organizational safeguards", technical solutions such as data encryption, and mutual understanding.[9] In a study of an article done through the University of San Diego School of Law, Sejin Ahn discovered that perhaps the most critical solution that needs to be strengthened is the legislative ban on re-identification and anti-discrimination protection. Ahn explains that these remedies must be addressed and updated in order to protect participants from privacy breaches.[10]
A survey of users of the site found that while most respondents 'were well aware of the privacy risks of their involvement in open genetic data sharing and considered the possibility of direct, personal repercussions troubling, they estimated the risk of this happening to be negligible'.[11]
Potential benefits
The website provided a proof-of-concept mechanism for allowing anyone to be involved in any stage of genomics research. This model allowed partnerships to form independent of governments, academia or for-profit organisations and was a way of creating the enabling conditions for anyone to access, influence and get involved in every stage of the genomics research cycle.[12] The model reflected the value that users of such sites attach to sharing data as 'contributing to the common good of research'.[11]
The transparent open-source code arguably allowed greater scrutiny and oversight than similar closed-source projects.[13]