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Man Open Sources His Genetic Data

An anonymous reader writes "Manu Sporny, founder and CEO of Digital Bazaar, has decided to use GitHub to store a very interesting project. 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."

37 of 198 comments (clear)

  1. I was here first by GodfatherofSoul · · Score: 5, Funny

    I've been offering my DNA samples for at least 20 years now.

    --
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    1. Re:I was here first by Cogita · · Score: 2

      I've been offering my DNA samples for at least 20 years now.

      Propositioning someone is not the same as open sourcing you DNA sequence ;-)

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      -- "The Price of Freedom of Speech, of Press, or of Religion is that we must put up with a good deal of rubbish."
    2. Re:I was here first by rootofevil · · Score: 2, Funny

      *sigh* the same old free as in beer vs free as in speech argument again...

      --
      turn up the jukebox and tell me a lie
    3. Re:I was here first by Mr.+DOS · · Score: 3, Funny

      Give me free beer and I'll give you free speech.

    4. Re:I was here first by Darinbob · · Score: 2

      I've been trying to offer mine, but people lose interest when I make them read the GPL first.

    5. Re:I was here first by Nadaka · · Score: 2

      Thats because the GPL is viral!

      You should try using the MIT or apache licence, chicks dig that.

    6. Re:I was here first by shawb · · Score: 2

      While it is generally more practical to merge the source with your own and produce derivative works, there exist numerous publications and websites with pictorial tutorials demonstrating redistribution of the original source as is.

      --
      I'll never make that mistake again, reading the experts' opinions. - Feynman
  2. Looking around... by AndyAndyAndyAndy · · Score: 5, Funny

    Where do we file bug reports?

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    It's always confirmation bias!
    1. Re:Looking around... by mangu · · Score: 2

      Where do we file bug reports?

      You don't. Leave that to his mother in law.

  3. Long term, not a good idea... by olsmeister · · Score: 3, Funny

    He's going to find himself running over and over again in emulators in about 50 years.

    1. Re:Long term, not a good idea... by Jeng · · Score: 4, Interesting

      That is one method of immortality.

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      Don't know something? Look it up. Still don't know? Then ask.
    2. Re:Long term, not a good idea... by interkin3tic · · Score: 5, Interesting

      You jest, but HeLa cells have been around for about 60 years. They're an immortal line of cancer cells taken from a woman named Henrietta Lacks. HeLa cells have been used in numerous labs around the world, per mass, there is more HeLa than there ever was Henrietta Lacks. I don't think anyone would have ever expected that at the time.

      Then again, Lacks never gave consent for the cells to be used, whereas this guy chose to make this data available.

    3. Re:Long term, not a good idea... by interkin3tic · · Score: 3, Informative

      Hela cells came from a cancer biopsy sample with a consent form

      From the wiki page on HeLa cells I linked to above (emphasis mine):

      The cells were propagated by George Otto Gey shortly before Lacks died in 1951. This was the first human cell line to prove successful in vitro, which was a scientific achievement with profound future benefit to medical research. Yet Gey freely donated both the cells and the tools and processes his lab developed to any scientists requesting them, simply for the benefit of science. Neither Lacks nor her family gave Gey permission, but, at that time, permission was neither required nor customarily sought.[4] The cells were later commercialized, although never patented in their original form. Then, as now, there was no requirement to inform a patient, or their relatives, about such matters because discarded material, or material obtained during surgery, diagnosis, or therapy, was the property of the physician and/or medical institution. This issue and Mrs. Lacks' situation was brought up in the Supreme Court of California case of Moore v. Regents of the University of California. The court ruled that a person's discarded tissue and cells are not their property and can be commercialized.[5]

      Reference 5, "The Immortal Life of Henrietta Lacks" is an interesting read, I'm not done with it yet. The family though is upset due to the lack of consent, and the fact that others profited off of the thing that killed her.

      No one should suggest that Henrietta Lacks is still around.

      They are cancer cells derived from her, they're her genes. Those genes have been sequenced. Genes from HPV are detectable in the genome, so she had HPV, that's some very private information on her medical history that is public knowledge through HeLa cells. They're not Henrietta Lacks, but they are still cells from her, to imply it's not her at all is a mistake.

    4. Re:Long term, not a good idea... by mug+funky · · Score: 2

      if you use a neural scan, then in the sim, like in reality, your answer would be the same:
      "eww, get away from me, freak!"

    5. Re:Long term, not a good idea... by mhajicek · · Score: 2

      Are you saying the strain Lacks consent?

    6. Re:Long term, not a good idea... by interkin3tic · · Score: 2

      That was hela funny.

  4. Creative Defense by grub · · Score: 2, Funny


    "Your Honour, my client wasn't sexually assaulting the alleged victim, he was merely Open Sourcing his genetic data."

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    Trolling is a art,
    1. Re:Creative Defense by Mysticalfruit · · Score: 4, Funny

      Sounds more like an unauthorized code injection...

      --
      Yes Francis, the world has gone crazy.
  5. What about his relative's right to privacy by Anonymous Coward · · Score: 3, Interesting

    Well, you could argue that anyone has the right to do this, but his DNA sequences will also be fairly close to his relatives DNA and you could probably make some assumptions about them and their predilection to certain diseases or whatever.
    I wonder if he asked for his relative's permission?

    1. Re:What about his relative's right to privacy by interkin3tic · · Score: 2

      Those sequences would change the expected probability of his relatives having the same sequences, but outside of a twin, it's not definite. I think any health insurance agency is going to have a hard time finding a way to deny coverage to, say, his sibling if he had markers for a given disease. If someone were to go into his sequences, scan for disease markers, and put a notice on their system to watch out for his sister trying to get insurance, that would be bad, but any evil insurance agent with half a brain would hopefully realize that's opening themselves up to quite a liability for little savings. If every other person were uploading their DNA sequences, that might make it cost efficient for some unscrupulous insurance company to try to discriminate against siblings, but just one family, I doubt it. If his siblings were to run for office and their brother had a heritable, neurodegenerative disease, that might be an issue.

  6. Here's what he's doing by gman003 · · Score: 5, Interesting

    While I can't actually speak for him, I have a pretty good guess at what he's doing.

    He's establishing his DNA as "prior art".

    Anyone who tries to patent some element of DNA (and there's plenty who will try to) now has a rather significant obstacle to overcome, especially since at least 99% of DNA is the same between people.

    1. Re:Here's what he's doing by yincrash · · Score: 3, Informative

      The genetic data he is making public domain are the 1 million SNPs that 23andme.com compile. SNPs are the 1% that is different from person to person and this is just 10% of that 1%. So it does not cover the 99% of DNA that is the same between people.

  7. Open Source? So that means we can fork him? by PolygamousRanchKid+ · · Score: 2

    Add features that his users really want, like razor-sharp talons, wings, and burning laser X-ray eyes. I think that the future will be really interesting.

    --
    Schroedinger's Brexit: The UK is both in and out of the EU at the same time!
  8. Lawsuit Still Pending by makubesu · · Score: 4, Funny

    His parents are going to get him for derivative works.

  9. Re:Open Source? So that means we can fork him? by Jeng · · Score: 2

    Can we upgrade our calcium bones to a stronger metal?

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    Don't know something? Look it up. Still don't know? Then ask.
  10. Link To DNA Source by Ancantus · · Score: 3, Informative

    For those not wanting to find it in the sea of links, Github DNA Source

    --
    Violence is the last refuge of the incompetent. -- Isaac Asimov
  11. Makefile by GNUALMAFUERTE · · Score: 4, Insightful

    There's a Makefile in the source. I assume it's a symbolic link to the kamasutra.

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  12. Please merge with me! by shd666 · · Score: 3, Funny

    Please merge with me! git pull https://github.com/nportman/dna

  13. Re:Open Source? So that means we can fork him? by Jafafa+Hots · · Score: 2

    You mean, like the metal calcium?
    Check your periodic table. It IS a metal.

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  14. Re:how long befor some calms a IP rights to part o by maxwell+demon · · Score: 3, Informative
    --
    The Tao of math: The numbers you can count are not the real numbers.
  15. Patented genes by tsa · · Score: 3, Interesting

    Haven't some genes been patented during the past years? How about the legal consequences of open sourcing these genes, which are part of his DNA?

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    -- Cheers!

  16. Amateur genetics by aBaldrich · · Score: 4, Interesting
    There are a lot of amateur geneticists out there. Quoting from Nature

    Hours after Joseph Pickrell put his genome on the internet, an anonymous blogger took the data and concluded that he came from Ashkenazi Jewish stock. Pickrell, a genetics graduate student at the University of Chicago, Illinois, was sceptical about the claim. But after talking to relatives, he discovered that he had a Jewish great-grandfather who had moved to the United States from Poland at the turn of the nineteenth century. "It was a part of my ancestry I was totally unaware of," he says. The blogger, who writes under the pseudonym Dienekes Pontikos at http://dodecad.blogspot.com/ had commandeered Pickrell's DNA as part of the Dodecad Ancestry Project, an ambitious project in which cutting-edge genomic analysis meets Web 2.0. Pontikos analyses genetic data submitted by followers of his blog to reconstruct personal ancestry and human population history — and reports his findings online. He is part of a small but growing group of 'genome bloggers', a mix of professional scientists and hobbyists proving that widely available tools for computational biology could enable recreational bioinformaticians to make new discoveries. "They are not amateurs. They are far from being amateurs," says Doron Behar, a population geneticist at Rambam Health Care Campus in Haifa, Israel, who studies human history. "I cannot stress enough the level of appreciation I have for their efforts." Pontikos has so far analysed several hundred thousand single-letter DNA variations from more than 2,200 individuals. That includes more than 200 submitted to him by readers of his blog, who had had their genomes analysed by genetics testing firms such as 23AndMe, based in Mountain View, California, with the remainder coming from publicly available datasets. The readers volunteering their genomes (identities stay private) are mostly keen to delve into their own ancestry. But Pontikos, who is from Greece and describes himself as an "anthropology dilettante", is more interested in unfurling the history of populations that tend to be overlooked by human-population geneticists. For instance, his analysis of genomes from people living in northern Eurasia reveals a genetic connection between populations in northern Finland and central Siberia (see 'Meet the ancestors'). David Wesolowski, a 31-year-old Australian who runs the Eurogenes ancestry project (http://bga101.blogspot.com), also focuses on understudied populations. "It's a response, in a way, to the lack of formal work that's been done in certain areas, so we're doing it ourselves," he says. Wesolowski and a colleague have drilled into the population history of people living in Iran and eastern Turkey who identify as descendants of ancient Assyrians, and who sent their DNA for analysis. Preliminary findings suggest their ancestors may have once mixed with local Jewish populations, and Wesolowski plans to submit these results to a peer-reviewed journal. But Pontikos sees little point in formally publishing his findings. "I can bypass them entirely, and have the entire world review what I write," he wrote in an e-mail. Indeed, comments on his blog — "could you please provide the eigenvalues for the principal component analysis", for instance — read like the niggling recommendations of a manuscript reviewer. ...

    Maybe he is opening his genome to anybody who wants to study it. Since it is the only Open Source genome, I'm sure there will be plenty of research, and he could benefit from it (not financially, but it's a nice relief to be assured that you can not have alzehimer, diabetes or whatever.)

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    In soviet russia the government regulates the companies.
  17. Future of gaming by petronije · · Score: 2

    step 1 - buy video game and install it
    step 2 - load your sequenced genes
    step 3 - play the game as yourself

  18. Personal Genome by jdoverholt · · Score: 4, Informative

    PGP did it first.

  19. Forks & merges by Rui+Lopes · · Score: 2

    As of now, he's got already 26 forks, so he's been cloned several times.

    But what will be impressive is having merges (via pull requests) accepted into the master branch. Crowd-sourced gene therapy (or mutation) anyone?

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  20. Re:That's silly by natehoy · · Score: 5, Insightful

    He is most certainly releasing the source code. In his case, it's a reverse-compile, so the code is messy and doesn't have any documentation, and probably has lots of GOTO loops in it.

    However, like most open-source objects, he's not including the compiler. You have to find or build your own compiler to compile the source into another being.

    I'm only aware of one compiler, but I can't figure out the make file format for 100% predictable results, and speculating as to its exact nature of this compiler is a matter of biology, philosophy, or religion, depending on which "man" file you open.

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  21. Who wrote this crap code? by w0mprat · · Score: 3, Funny

    This is the worst open source code I've ever looked at, it's a mess of spahetti code, full of kludge after kludge. There's no commenting and most of the code doesn't seem to do anything, there are functions that haven't been used in literally millions of years. Talk about bloat!

    How this stuff compiles and runs I don't know, it's clearly NOT intellegent design!

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