There are many services popping up on the Internet allowing you to store data about yourself or the projects you are working on. One of the most popular among the development community isGitHub: a distributed version control system mainly for software development allowing you to share and collaborate with others online.
While GitHub can be paid for as a service for private projects, open source projects get hosted for free. So there is a general mix of both types of project and over 1.7 million repositories currently stored on the service.
Manu Sporny, founder and CEO of Digital Bazaar, has decided to use GitHub to store a project of a very different nature. Rather than a piece of software, he is listing his own genetic data as an open source project. He has released all his rights to the data and made around 1 million of his genetic markers public domain.
As to why he decided to do what many may feel is a risky sharing of data so personal and unique to himself, Manu explains:
I’ve thought long and hard about each of those questions and the many more that you ask yourself before publishing this sort of personal data. There are large privacy implications in doing this. However, speaking solely for myself, I think the benefits outweigh the drawbacks.
Manu hasn’t gone into great detail as to his thought processes yet, but promises to on his blog at a later date.
His genetic data was compiled by the company 23andme. For $199 and $5 per month thereafter, they will send you a kit in which to deposit a saliva sample. This is then posted back and the data compiled and analyzed. After that updates can be accessed on a monthly basis.
The body has around 10 million single-nucleotide polymorphisms (SNPs) – the genetic markers Manu shared – of which 23andme analyze 1 million by placing your saliva sample on a genotyping beadchip. Of those million, only 14,515 are known about in science, and only 160 are used by 23andme for analysis.
As Manu points out, the majority of those million SNPs he has is data that can’t be used at the moment, but will eventually be known about as science progresses and discovers what they are. So his open sourcing of this data offers anyone, including scientists working in this area, some raw data to work with.
Do you think Manu’s decision to share his genetic data is a good one and will help to advance the understanding of the human body? Or will it just become a privacy nightmare for him in the future?