Forgot your password?
typodupeerror
Biotech The Internet

Man Open Sources His Genetic Data 198

Posted by samzenpus
from the man-of-the-people dept.
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."
This discussion has been archived. No new comments can be posted.

Man Open Sources His Genetic Data

Comments Filter:
  • Link To DNA Source (Score:3, Informative)

    by Ancantus (1926920) on Wednesday February 16, 2011 @04:22PM (#35224508) Homepage Journal
    For those not wanting to find it in the sea of links, Github DNA Source [github.com]
  • by yincrash (854885) on Wednesday February 16, 2011 @04:52PM (#35224784)
    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.
  • Personal Genome (Score:4, Informative)

    by jdoverholt (1229898) <[moc.liamg] [ta] [tlohrevo.nahtanoj]> on Wednesday February 16, 2011 @05:08PM (#35224944) Homepage
    PGP [personalgenomes.org] did it first.
  • by interkin3tic (1469267) on Wednesday February 16, 2011 @06:15PM (#35225612)

    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.

The universe does not have laws -- it has habits, and habits can be broken.

Working...