[cancer|science] My entire genome has gone open source

I am pleased to say that one of the long-term results of the genetic testing fundraiser you guys participated in this past January, Sequence a Science Fiction Writer, is that the Personal Genome Project is now hosting my complete genetic sequence online as a UNIX .tar file. (Don’t click that link unless you want to download 200 gigabytes of compressed data.)

In other words, my entire genome has gone open source.

While I’m not absolutely certain this is true, it appears to be the first time that an entire human Whole Genome Sequencing data set has been released open source. If not the very first time, one of the first times. None of this would have been possible without all of you who helped make the fundraiser succeed.

For my own part, cancer will claim my life soon enough. Releasing my Whole Genome Sequence to the world is one small way I can fight back against the disease. Not directly, of course, but as a way of helping students and researchers around the world become smarter about human health and life in general.

Thank you.

15 thoughts on “[cancer|science] My entire genome has gone open source

  1. CE Murphy says:

    That’s flat-out awesome. I hope yours is the first ever, because Science! Legacy! but even if it’s ‘only’ one of the first, that is flat. out. awesome.

    And really, there’s nobody for whom it seems more appropriate to have gone open-source right down to the DNA than yourself. 🙂

  2. Rafe says:

    First, there was HeLa, now there can be JayLa. 🙂

  3. It may indeed be the first open source cancer genome. Great good comes from open data, and now you are part of the vanguard of open human health data. Thank you!

  4. pelican says:

    Thanks for increasing the good in the world this way!

  5. C.E. Petit says:

    Oh, but the sinister possibilities of not-so-far-in-the-future armies of genetic clones. New Bond-villain hashtag: #armyofjays


  6. Terry says:

    No, Sweetie. Thank YOU.

  7. Andreas says:

    Hi Jake,

    hope it’s not too personal: were the risks of “open-sourcing” your genome (that are stated on the pgp website) of concern to you, especially regarding your family? Did you discuss this step with them (and ask for “permission”)?

    All the best with your trial enrolment. Yay Science! 🙂

    1. Jay says:

      Actually, yes I did. As my daughter is adopted, I was placing her at no medical privacy risk, which would have otherwise been my biggest concern.

      1. Andreas says:

        I assumed you did.
        I just recently read “The Immortal Life of Henrietta Lacks”, which actually first made me really aware that there is such a thing as a “medical privacy risk”. It’s awesome that you chose to go “open source”.

        PS: Sorry about calling you “Jake”, Jay :/ Next time, I’ll try to be fully awake while commenting…

  8. Stuart Clark says:

    You have become immortal in the digital world!

  9. Dan in Seattle says:

    When I contributed last year I was hoping it would lead to a personalized treatment for you. Alas. But this is a phenomenally SFnal thing you are doing. Who knows what will treatments or discoveries will be found in the future because of it? Good on you, mate.

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