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Human Genome To Be Released To Public

Phizzy writes, "According to this CNN Story, President Clinton and Prime Minister Tony Blair have announced that the information gathered in the Human Genome Project will be released to the public. Maybe we can ease our fears about the Genome being controlled by one party. " Good. This is one of the smartest things I've seen this year.

27 of 133 comments (clear)

  1. Re:GPL!!! by jafac · · Score: 2

    Actually, under UCITA, I can revoke their license to MY genes at any time I feel they are violating it. I wonder if I can retroactively revoke my childrens' genes (effectively mine) if I think they're illegally copying them or sharing them with someone else?

    I wish I had a nickel for every time someone said "Information wants to be free".

    --

    These are my friends, See how they glisten. See this one shine, how he smiles in the light.
  2. Re:Isn't it already available? by Ralph+Bearpark · · Score: 2
    I was trying to compress it, but I'm not getting better results then if I were compressing random data (does that mean anything?!?)

    I wonder if SETI have ever tried passing the human genome data through their spot-an-alien filters. Or pi or e if it comes to that.

    Why should messages from alien intelligences always be expected to come from Out There? Why not In There?

    Regards, Ralph.

  3. Re:Private Research by N8F8 · · Score: 2

    Clinton and Blair can make any statments that wish about releasing public research. Writing an executive order changing patent law would undoubtedly become cannon fodder in Congress and the Supreme Court since patent law is codified in the Code of Federal Regulations 37 CFR.

    One way public institutions could fight back would be by refusing to collaborate with private companies. Sounds crude but it would force the company to risk spending extra research dollars on somthing that may not be patentable. As it stands I think they are trying to get somthing for nothing by being the first to produce the entire database and calling it a unique piece of art.

    --
    "God fights on the side with the best artillery." - Napoleon, Marshal of France - speaking truth to power
  4. Slightly more informative site. by Graham+Clark · · Score: 2

    Also, there's a slightly more informative story on the BBC's website.

  5. This isn't as clear as it sounds. by Graham+Clark · · Score: 2

    According to the CNN story, Bill and Tony are going to applaud the researchers on the Human Genome Project (just so you know where I stand, that includes me) and call upon other researchers to make their results public with the same lack of attached strings. This sounds like a reference to Celera Genomics (and possibly Incyte and a number of other biotech companies). What it doesn't say is that they're going to make it in any way more difficult for said companies to obtain intellectual property rights over sections of the human genome. They may do, but it doesn't say so in the story.

  6. Is it GPLed? by griffjon · · Score: 2

    Is GPL now "General Pubic Licentiousness"?

    And if it is GPLed, doesn't that mean you can't resell something that packages it? Does this make prostitution universally illegal due to the GPL???

    That'll hurt Las Vegas come next comdex.

    --
    Returned Peace Corps IT Volunteer
  7. GPL!!! by Max+von+H. · · Score: 2

    Let's GPL the genome, after all it's THE source code... Then, we can all start making cool changes! The CVS is available in any good library, under the author "Darwin".

    Don't even mention Beowulf here...

    max

    --
    -- It's always darker before it goes pitch black.
  8. Re:Not what it appears to be! *A PROPOSAL* by LetterRip · · Score: 2

    IT seems appropriate that I put form my proposal at this time, that is similar in spirit.

    Each technological group of patents would have its own maximum expiration time. This expiration time would be based on the dynamicity of the technology- which would be determined by the number of patents issued in the group the previous three years.

    Further, I would change the patent process such that each patent is automatically granted, with the caveat that a five grand bond must be placed with the patent. Anyone can challenge the validity of the patent by putting up five grand. This money would in turn go to five reviewers, chosen at random from a pool of experts in the technology. Each expert would rate the patent on a scale of 1-10 on its innovativeness. 1 being blantantly obvious, 5 somewhat innovative and a 10 extraordinarily innovative. The patent life would then be based on the average ratings of the experts. If the average rating is less than 5 then the patent is immediately invalidated, and the patenter loses their bond. If it scores 5 or greater, the challenger forfiets his challenge money. The time length of the patent would then be based on the average score. The default would be the maximum time length for that category. The rest would be the average score as a percent of the maximum score multiplied by the category.

    Please tell me what you think,

    LetterRip
    fstmm@yahoo.com

  9. Re:Not what it appears to be! *A PROPOSAL* by LetterRip · · Score: 2

    "but I seriously disagree with your suggestion of charging five thousand dollars for the opportunity to dispute a patent"

    I assumed that for impoverished programmers with valid claims, an organization similar to the EFF would probably help. Or alternatively, I'm certain that there will be organizations willing to pony up the five grand for a percentage of the take.

    This system is mostly to streamline the elimination of obvious patents, and to reduce the strifiling of innovation, especially in those areas that are experienceing rapid growth and change. It's also meant to reduce the whole lawsuit strategy of filing bogus patents that the clerks are undertrained/staffed to realize, and than suing anyone who infringes. If someone attempts to sue- pony up five grand, get the claim invalidated, end of lawsuit. If the claim holds up- settle quickly .

    LetterRip
    Tom M.
    fstmm@yahoo.com

  10. GPL the Human Genome Project Data by greystrider · · Score: 2

    In many ways, this joint statement just states the obvious. The data from the publicly funded Human Genome Project is and always has been intended to be free and publicly available.

    Celera is a competing private effort. I really do not believe that governments intend to expropriate Celera's database, which has been privately funded. However, Celera has made extensive use of the public data to augment its own. (The nature of their sequencing methods require many overlapping fragments and redundant coverage to ensure accuracy.) One way to pressure Celera to make its data freely available would be to license the public data under something like the GPL - to demand that any database products that use it or derive from it are made freely available.

    Regardless, even if Celera does not share, the HGP will catch up within a few years.

  11. Isn't it already available? by millette · · Score: 2

    Not sure if this is the correct url, but I've got 33megs of chromosome 22 sitting on my hd, I was trying to compress it, but I'm not getting better results then if I were compressing random data (does that mean anything?!?).

    For the curious:
    http://www.ncbi.nlm.nih.gov/genome/seq/page.cgi? F=HsHome.html&ORG=Hs

    I'm running to school, but I'll check the url when I'm back, 9 hours from now or so...

  12. What it could mean! by lovebyte · · Score: 2
    AFAIK, all information relating to the human genome project is free. But this might change. More an more scientists are busy analysing the raw sequences to find the genes. Genes seem to be patentable since quite a few biotechs have already done it, as has been said in several posts here. It is possible that the Clinton Blair duo want to make it illegal to patent genes coming exclusively from human genome project data. As usual, journalists are completely clueless when it comes to scientific/computing news.
    There is a little bit more info on yahoo.

    --

    I'll do it for cheesy poofs.

  13. Not a Secret Project anymore! by frankie · · Score: 2

    I'm really glad about this turn of events. Having +1 Talent at each base will really cut down on Drone Riots. They don't happen very often in Baltimore, but I've seen a few in D.C.

  14. This is a step in the right direction... by ParadoXIII · · Score: 2

    ...but it's not enough. It should be our goal to open up information on all science to the people, to foster the advancement of the knowledge of the human race as a whole.
    The more we know, the less possible it will be to accidentially destroy ourselves.

  15. Re:Kernel 2.4 released to the public! by jw3 · · Score: 2
    I know that Celera is not the same as TIGR, of course. (Even with Claire Fraser being the head of TIGR). But the activities of both institutes seem to be quite crosslinked, as can be drawn from the published papers, at least through the person of Craigg Venter and the "creating artificial cell" idea. And I never said they are the same -- but even though Celera is much more commercial then TIGR, the annoyance I wrote about was linked to TIGR. So that's why I gave TIGR as a second example, next to Celera.

    January

  16. doesn't say a thing about patenting genome. by Raindeer · · Score: 2

    The article is nice, but it doesn't give any info on whether or not results from the project will be freely available, or if it is still possible to patent specific genes.
    The last part I find the most frightening, because it would impose a deadlock on treating genetic diseases caused by the gene. I would rather see the genes to be freely available, but the treatment to be patented. This would still give the possibility for a workaround.

  17. Re:Not what it appears to be! *A PROPOSAL* by ATKeiper · · Score: 2
    Anyone can challenge the validity of the patent by putting up five grand

    Interesting proposal, and quite intricate, but I seriously disagree with your suggestion of charging five thousand dollars for the opportunity to dispute a patent. If an impoverished programmer wants to dispute a patent claim (perhaps because he had the idea first), he should have priority and protection whether he can pony up the five-K or not.

    I certainly agree with the crux of your proposal - that patent expiration dates "would be based on the dynamicity of the technology." I'm not sure what "dynamicity" means, but I assume it means something like "the pace of change." If so, your idea and mine are at heart motivated by the same wish: for a patent system that reflects that long-term monopolies of discovery or innovation can stifle (instead of encouraging) progress in fast-moving fields.

    A. Keiper

  18. Re:Not what it appears to be! *A PROPOSAL* by ATKeiper · · Score: 2
    Sir -

    Thank you kindly for the links, but I disagree with your conclusion. Lots of companies are pursuing patents on their genomic data, and I feel they deserve compensation for the money, time and labor of their work. That's why I think a short-term patent would be effective; companies wishing to do research with that data could pay for it, or wait the short while (perhaps two years? four?) till they get it for free. Other companies that do decide to use the genomic data for research will pay for it - and if they manage to create a successful drug based on that research, the cost will trickle down to the consumers, so in the end the people who benefit from the drug are the ones who pay for the research behind it.

    And I disagree also with your argument (which I have perhaps misinterpreted?) that the only intellectual property that should be safeguarded is that which protects the public good or national security. Why shouldn't innovators and discovers benefit from their hard work? We're really debating what I consider one of the most civil notions of modern society: that those who do research or create new things should be rewarded just as if they performed more tangible tasks like bricklaying or farming. There are significant parallels in the copyright discussion (which Katz's post today raises); in that arena, if your argument were carried to its conclusion (ad absurdum), practically nothing could be copyrighted. After all, music and literature benefits the public, so it "should be free for everyone," right?

    Perhaps I am being unfair to you; if so, I apologize. And I thank you again for your thoughtful reply and the links.

    Yours,
    A. Keiper

  19. /.'ers need to read up by Loneaggie · · Score: 2

    The discussions about biology here often cause me to grit my teeth and shake my head in dismay. My degree is in molecular and cell biology, and I happen to work in a gene sequencing lab. First of all when these companies patent something it really isn't "the sequence" itself. What gets patented are things like cis and trans promoters/enhancers that are cloned into vectors. In terms of "open" source the genetics world is wide open. You can go to NCBI's homepage and run a sample sequence through the National database and get a few hundred results including H. sapiens similarities. No one has yet mentioned that the human genome project and celera have taken VERY DIFFERENT routes to get their data. HGP uses linear sequencing...one chunk at a time per se, last I heard Celera used a whole genome shotgun approach. Its actually more profitable because only a small percentage of the genome does anything...so they can pick out areas that "look interesting" and go back and linear sequence them. Basically this was a PR stunt and the public along with /.'ers ate it up. This is very old news and the posters/moderators might want to read a decent freshman biology text so they can figure out what's out there and what's not about these stories. As for science being free ... um well when the people that ask for it will pay my rent, buy my groceries, and take care of my bills I'll be all for it, come on let's put both feet on the ground people. Just my two cents.

    --

  20. Or is it? by Not+Linus+Torvalds · · Score: 2
    Although I like the idea of reputable, sane scientists having free access to the full genome I do see one potential problem.

    What if some crack-pot psycho nation gets their hands on this and develops genetic warfare. The last thing we need is for someone to unleash something like that on an innocent civilian population. Imagine you're walking through central park with your girlfriend and realize that she, and you, have been genetically assaulted and you are developing gills and are becoming unable to live outside of a pool of sewage. Yes, that's a little out there but I think it would suck.

    --
    If that Gates guy ever comes around I'll rip his fscking kneecaps off!
  21. Read carefully by HiQ · · Score: 2

    It doesn't say that the genome will be made available, only that "... all discoveries from the Human Genome Project will be made available to the global scientific community". That is still something different. Furthermore, public is not the same thing as scientific community.

  22. Opensource the code! by Sanity · · Score: 3
    Obviously the next step is to place the code up under CVS so that anybody will be able to make modifications. No longer will the future of the human race be decided by strangers alone in their bedrooms, now we will be able to open up evolution to public scrutiny so that all hackers (not just the lucky few with girlfriends) will be able to contribute to the future advancement of the human race.

    --

  23. Private Research by N8F8 · · Score: 3

    This doesn't really solve much. A big part of the controversy is the research that is privately funded. Referencing this Wired Article (noted in this earlier /. article), "Celera Genomics president and CEO Craig Venter said Tuesday that his company is willing to continue discussing a collaboration with its longstanding competitor, the international Human Genome Project."

    Sure this helps with some of the information it doesn't really address the underlying problem of private companies patenting gene sequences.

    --
    "God fights on the side with the best artillery." - Napoleon, Marshal of France - speaking truth to power
  24. Databases are already open to all by gcoates · · Score: 3

    The EBI has a list of the various genome databases, which are all freely searchable. You can check up on the progress of the various genome sequencing projects here.

  25. Not what it appears to be! *A PROPOSAL* by ATKeiper · · Score: 3
    As others have pointed out, the Human Genome Project data have been publicly available all along anyway. Many researchers have already enjoyed the opportunity to begin working from those data.

    But the larger question is whether the private firms will be forced to relinquish their data. The CNN story says nothing about that.

    Someone else mentioned Celera, and quoted a story from Wired's website. Celera is, by far, not the only company pursuing patents on genomic data. Other companies (with thousands more patents applied for) include HGS, Incyte and Athersys. (You can read about their efforts on our Biotech page.)

    My proposal: Create a new class of patent with a shorter lifespan that will allow these companies to rightly profit from their research (which has helped the public project immensely). This is rather like Jeff Bezos's proposal for Amazon patents; a new category with fewer years of monopoly so innovators can still benefit from their work and their investments, while the public will still benefit in the not-too-distant future.

    Is that fair? I know many here on /. don't buy the notion of compromise (ever), but lots of you are eminently fair-minded. Is my proposal unreasonable?

    A. Keiper
    The Center for the Study of Technology and Society

  26. Kernel 2.4 released to the public! by jw3 · · Score: 4
    According to a CNN story, Bill Clinton and Tony Blair annouced that the sources of the Linux kernel 2.4 will be released to the public!
    Seriously, people. HUGEP isn't run by any goverment, and is a scientific project. Scientific means in that case: made by scientists working at public scientific institutions, like universities and such. Which automatically means that the human genome, once sequenced by HUGEP, will be published in Nature or Science or whatever scientific magazine they choose -- not the sequence per se, but due to publishing policy in these journals it will be accessible via WWW or on demand, as it is the case with all scientific research.

    Do you know that if you work at a university, and you find something suspicious (or want to repeat the research, or need it for your research, or are just curious) in a published article, you have a right to demand exact informations from the scientist who published it, including getting the original clones / organisms he used for the research? Of course, if the author works for a public institution. This is the major difference between them and such institutions like CELERA / TIGR.

    Let me give you an example. This year an article appeared in Nature on a mutagenesis study of the small bacterium I'm working with. It was performed by associated scientists of one of those big commercial research centers. The article and information published on the web did not give you exact details as to where the reported mutations were placed on the genome, only -- which genes have been knocked out. A professor I know, who also works with these bacteria, wrote to the author to get the details of the study -- and never received any answer. This couldn't happen with an academic institution.

    There is a book of a polish writer and Nobel prize winner, Sienkiewicz. It tells the story of the Swedish-Polish war from the XVII century. In one of the scenes, the king of Sweden offers to one of local polish princes that he will give this prince a certain polish teritory, which is occupied by the swedish army, if he agrees to colaborate. The prince answers -- "All right, and I will give you Netherlands".

    What I want to say, they are giving away Netherlands: making an offer which is of no value just for the sake of telling it -- because it's not their science and because *of course* it will be released to the public. HELLO! This is not CELERA/ Perkin Elmer, for God's sake!

    I will repeat myself, because I consider this matter very important: sequencing projects like HUGEP, payed by academic institutions do publish they data. Take a look at the Mycoplasma pneumoniae homepage -- the group I've been working in sequenced the genome and published it, and you can of course download all the data. Only on-going research projects, which have not yet been published in a scientific journal, are not public - yet.

    Speaking of which: publishing the HUGEP data before the project is ready is giving a helpful hand to the privat counterpart of HUGEP - namely, Celera Research. And those are the "patent guys" in this case -- I would really like to see HUGEP ready before Celera is.

    Regards,

    January

  27. DOE-NIH Guidelines for Sharing Data and Resources by Guppy · · Score: 5

    This particular document happens to be related to the US portion of the HGP, but as you can see it has been standard policy, for several years now, to release data as it is generated to public databases. For example, the NCBI Genome Guide, which has both sequence and general information.

    DOE-NIH Guidelines for Sharing Data and Resources

    At its December 7, 1992, meeting, the DOE-NIH Joint Subcommittee on the Human Genome approved the following sharing guidelines, developed from the DOE draft of September 1991.

    The information and resources generated by the Human Genome Project have become substantial, and the interest in having access to them is widespread. It is therefore desirable to have a statement of philosophy concerning the sharing of these resources that can guide investigators who generate the resources as well as those who wish to use them.

    A key issue for the Human Genome Project is how to promote and encourage the rapid sharing of materials and data that are produced, especially information that has not yet been published or may never be published in its entirety. Such sharing is essential for progress toward the goals of the program and to avoid unnecessary duplication. It is also desirable to make the fruits of genome research available to the scientific community as a whole as soon as possible to expedite research in other areas.

    Although it is the policy of the Human Genome Project to maximize outreach to the scientific community, it is also necessary to give investigators time to verify the accuracy of their data and to gain some scientific advantage from the effort they have invested. Furthermore, in order to assure that novel ideas and inventions are rapidly developed to the benefit of the public, intellectual property protection may be needed for some of the data and materials.

    After extensive discussion with the community of genome researchers, the advisors of the NIH and DOE genome programs have determined that consensus is developing around the concept that a 6-month period from the time the data or materials are generated to the time they are made available publicly is a reasonable maximum in almost all cases. More rapid sharing is encouraged.

    Whenever possible, data should be deposited in public databases and materials in public repositories. Where appropriate repositories do not exist or are unable to accept the data or materials, investigators should accommodate requests to the extent possible.

    The NIH and DOE genome programs have decided to require all applicants expecting to generate significant amounts of genome data or materials to describe in their application how and when they plan to make such data and materials available to the community. Grant solicitations will specify this requirement. These plans in each application will be reviewed in the course of peer review and by staff to assure they are reasonable and in conformity with program philosophy. If a grant is made, the applicant's sharing plans will become a condition of the award and compliance will be reviewed before continuation funding is provided. Progress reports will be asked to address the issue.