We’d like to make an announcement...
Personal Genome Project - making our raw genetic data available for all!
All of us here at Genomes Unzipped has taken the leap and decided to make all of our raw genetic material and the accompanying reports freely available to the public at large on our online platform.
The idea, and ultimately what we hope to achieve, is a repository of genetic data from a large array of tests, that extends to whole-genome sequencing, that is freely available for anyone to access.
Why are we doing this?
Yes, it was a big decision, and we wanted to ensure that we weren’t doing it lightly.
We looked into the potential issues of sharing this data, and after much discussion and deliberation, we, both individually and as a group, felt that the potential benefits by far outweigh the potential harms.
Good science requires releasing data to fellow scientists. It is only by methods such as peer review and repeating similar experiments for comparison, that science can progress, whether it aids preceding ideas or whether it tells us we’re looking at things incorrectly.
By releasing this genetic data, we hope to guide useful discussions regarding the benefits, risks, and limitations of genetic information in open research. However, we believe that the fears expressed about exposing such information in such a non-anonymous are grossly exaggerated.
Taking the leap
All project members discussed this with their first-degree relatives to ensure that they were fully prepared with regards to the inference of any potential serious disease in our close family members.
(In succeeding blog posts, we will share with you how we discussed this decision with our families.)
To bring this vision to reality, someone has to be the guinea pig. And while there are others who’ve helped pave the way, we felt impassioned to do our bit, and take things a step further still.
What’s next?
We have developed a custom genome browser (using JBrowse), and through this, all our data from our 23andMe raw data can be examined through its visual interface.
We’re even making the code for software public too. The more hands we can get on deck, the more we can achieve.
We hope and expect that efforts will make a real difference, as our genomes are gradually joined by many many other like-minded individuals, who share our vision.
We may not be able to wholly predict how the project will unfold, we are resolutely and confidently optimistic.
Final Word
If you too would also be interested in submitting your own genetic raw data to our repository, then you can. Please check out our Informed Consent document, which spells out all the potential issues that may arise in publicly disclosing your genetic information.
If you’re interested in getting involved in any way at all, please do not hesitate to contact us. We will endeavor to address any questions you may have. We welcome every action that can aid us in our mission.