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Genome Project Squabbling

marks writes, "Wired has an article about the Genome Project. The article takes quotes from doctors who want the squabbling over 'property rights' to stop and the project to go forward to benefit patients. "

17 of 150 comments (clear)

  1. Re:Oh, CRA me a river... by Tim · · Score: 3
    "A quote from their investor information: "To map all 80,000 human genes and find our SNPs, Celera is using Whole Genome Sequencing, a technique pioneered by several of Celera's scientists who were formerly at The Institute for Genomic Research. Using sound waves, a chromosome sample is dispersed into small DNA fragments that can be sequenced, then mapped back together based on their unique base-pair coding. In many cases, a 500-base-pair overlap at the end of a fragment is sufficient to determine that a particular piece of DNA belongs on a particular chromosome.""

    Look at that--a perfect description of brute-force assembly of the human genome. I'm certainly glad you corrected me.

    FYI, the technique used by CRA is called shotgun sequencing, and it has been debated before, but until recently was thought too resource intensive for use on very large genomes. For some information outside of CRAs investor's information page, you might try these:

    Sequencing of H. Influenzae
    Science, July 28, 1995, V269, pp. 496-512

    Shotgun Sequencing of the Human Genome
    Science, June 5, 1998, V280, pp. 1540-42

    (Hmmmm...you'll have to excuse me...I tend to get my misinformation from referred journals rather than corporate websites...)

    "In other words, there is a reason that they've been able to do it so fast. They are years ahead of the Human Genome Project."

    You know what? You're exactly right--CRA *is* ahead of the HGP, and they are *fast*. That doesn't change the fact that they're using off-the-shelf machinery and publicly available algorithms to do a tedious, well-understood and largely mechanical job.

    "Their entire business model is based on selling analysis of the information to drug companies. They already have several large firms signed to use them."

    Uh-huh. Go back to CRAs investor's information page and find out how many CRA employees are doing the wet-lab biochemical analysis that will figure out what the genome really means. CRA has hired a few good computational biologists, but these will only get you so far in the world of molecular biology and biochemistry. The real analysis work has to be done by the hordes of laboratory researchers who actually utilize the kind of data were talking about.

    So what will CRA do if they don't have lots of these types of researchers? Well, based on CRAs ambiguous business model, my guess is that they're going to package up their sequence data with references to public literature--a la LEXIS/NEXIS. In essence, a repackager of human genome data. I have absolutely no problem with this.

    I do have a problem with the way CRA is taking a scorched-earth policy to patenting genes. *This* is the real reason that drug companies have signed up with CRA for early access--they're hoping to get their dirty little mitts on the hot genes in CRAs patent portfolio--and in the process, get an exclusive license agreement for the use of the same. CRA may only patent 300 or so of the thousands of genes they have preliminary patents on, but these 300 will have been carefully picked over by CRA and the drug companies so that no one else gets access to anything of serious value. Now, explain to me how this sort of behavior is supposed to encourage calculated risk and entrepreneurism in the biotech community?

    "Why don't you read their investor statements before spouting off about which you know nothing."

    I hope you have a nice day too.

    --
    Let's try not to let fact interfere with our speculation here, OK?
  2. Re:Socialized medicine by Glytch · · Score: 3

    Err, not to sound rude, but that's bullshit.
    (/me mounts his soapbox:)

    The US does *not* have the best medical system in the world. I believe that honor goes to Canada. And guess what. We've got, gasp, socialized medicine.

    I don't know about profit motives and incentives, but all I know is that people in my country don't go bankrupt because they can't pay for dialysis treatments. We aren't denied payment for our treatments from our HMOs because we've got AIDS, or cancer, or multiple sclerosis and aren't expected to live long. We don't have to take out a second mortgage to afford that liver transplant.

    I personally know three people who received world-class chemotherapy, and who all make less than $40000 per year. (Two teachers and a call center worker.) Socialized medicine is not a failure when the government involved is truly committed to making it work, and is also accountable to the public. Unfortunately, that combination is lacking in many countries...

    Imagine if the U.S. gov't poured a proportional amount of money that Canada does into the creation of a genuine full-scale socialized medical system. I hope it happens in my lifetime, so that I can see you folks down south not get screwed over by your HMO or insurance companies' shareholders.

    (/me gets off his soapbox.)

  3. Re:A company trying to keep its property by ucblockhead · · Score: 3
    Actually, I think the real issue is not that they want to charge people for creating treatments from their data. They want to charge people for their data. There is a difference. And they certainly have a right to.

    In other words, if they sequence gene XYZ, they certainly have the right to sell you this information in any manner they want. What they don't have the right to do is to tell anyone else that they can't sequence gene XYZ. In other words, they don't own the gene itself. They merely own their information about it.

    It is no different from me doing lots of anatomical studies on the human heart, and then copyrighting the information and putting it up for sale. I can certainly do that. It doesn't mean that I "own" the human heart. You are free to gather your own information and copyright that. The only thing you can't do is copy mine without my permission.

    Same here. All Celera is demanding is the right to be paid for the information they aquired if you get it from them. They are not denying you the right to go aquire the same information.

    --
    The cake is a pie
  4. Re:yeah capitalism! by Duxup · · Score: 3

    You might be too late.
    I was recently notified by Amazon that Carbon based life and processes to sustain it has now been patented by them . . .
    It will cost my family an extra $45 this year if we have a child, $10 less though if we adopt! Think we'll adopt.

  5. The points are correct, but.... by smoondog · · Score: 3

    I agree with the original poster on all points. I also argue that there is a difference between in theory and in practice.

    It's true that genes are not patentable. In general, though, genes are patented on their (fairly obvious) uses.

    Also, to say that someone needs to do something with a sequence to patent is it is almost silly these days. The height one has to jump to get a gene patented really depends on the cost of the patent lawyer.

    As to Celera, they haven't been around long. But shotgunning the genome makes them a competiter to the genome project, longstanding or not. They said they were going to do the easy parts of the fly, they did. They say they will do the easy parts of the human, well....


    -- Moondog

  6. Re:A company trying to keep its property by seaneddy · · Score: 3
    Indeed, that would be fine, if Celera would be clear about that.

    Instead, they have tried to cast themselves as a competitor to the public genome project. Our goal is to provide the human genome sequence as a freely available research resource. Venter initially declared that that was also Celera's goal. Now, though, they're filing thousands of provisional patents and asking for exclusive distribution rights to the human genome. That's not compatible with the public goals. Celera should just admit that they're a business, and stop trying to claim otherwise. The proposed collaboration fell apart because Celera would not accept the terms that *they* initially stated: that the human genome sequence would be made freely available to everyone. (Indeed, Venter testified before the US Senate on this very point.)

  7. Again, in theory by KahunaBurger · · Score: 3
    Also I would like to point out that this would not stop anyone from re-doing the research themselves and using the information from their own research in any way shape or form.

    Not to be snotty, but "you are right in theory, but..."

    In practice, these companies have every intention of trying to protect "their" gene sequences as proprietory. Pharmecutical companies have done more rediculous things and had the courts back them up. Example:

    Guy is getting some tests done at a hospital and they find that he has some sort of immunity/protien/useful cell property that could help them develope a treatment. Guy agrees to let them take a cell culture. Research proceeds apace and treatment is developed. Pharmacutical company associated with hospital research department patents treatment and the cell line it came from. Guy who's cells they are sues for ownership of his own cell line, loses. This means that not only does this company own their treatment, they own this guys unique cell line. He cannot choose to cooperate with another hospital so that they can independently develope the treatment and compete.

    Now if this one company honestly wants to protect their right to sell info, al la a map maker, while allowing anyone else to independently produce the same info and give it away, that would be great. It would also be completely out of charecter with the history and stated goals of companies outside the Human Genome Project. So forgive us our cynicism.

    On a side note, I get sick and tired of hearing about how these companies have to have patents to protect "their" investments. Do you have any idea how much of their research is done with government money, either directly, though "development" tax breaks or partnerships with universities supported by NSA grants? And then they turn around and talk about research costs and that they're a private business that has to make a profit.

    Personally, I believe that pharmacutical companies should be given a simple choice. Either you are a private business looking out for your own bottom line and your research costs, in which case you will get no government support, including tax breaks and partnering with any government sponsered research facilities, OR you get all the benifits of societal support that we give pharmacutical and biotech companies in exchange for acceping a modified "public interest" patent on your developments. A Public Interest Patent (PIP) would have a significantly shorter expiration period than standard and would not be enforcable against authenticly convergent research. (insert research companies helping develope an audit proceedure for challenges to authentic convergency here).

    If they are going to spout free market retoric to defend making a literal killing on life saving drugs, they should be willing to take their chances in a real free market.

    -Kahuna Burger

    --
    ...will work for Chick tracts...
  8. Ups and Downs of patenting DNA sequences by zaius · · Score: 3
    When I first saw this story some years ago, I thought that patenting DNA was one of the dumbest ideas I had ever heard. It would be easy to see how it could harm patients, because either biotech companies would charge massive fees for the use of "their" DNA sequences. That or, by patenting a small sequence of DNA for use studying one gene/disease, you risk also patenting genes causing other diseases, but prevent researchers from investigating that possibility.

    On the upside, it makes more sense for major corporations to invest in the process if you allow patents to be issued.

    However, on the downside again, by awarding patents you discourage the use of new, innovative techniques to map out DNA sequences. By this I mean that people who can dump massive amounts of resources into sequencing DNA using existing technologies may get results faster than researchers who look for new, faster, or more reliable ways to do the same thing. In the long run, having newer, faster and more reliable ways would be better, in case we ever want to sequence the DNA of other things.

    A good link to check out is HUGO's (HUman Genome Organization) statement on patenting DNA sequences.

    I am very curious to know what other people's opinions on this are.

  9. Prostitution of Science by MaxGrant · · Score: 3

    Let's try the corporate mindset described herein in the context of, say, Galileo. Here's what the legal writ-of-800-lb-gorilla would read:

    I, Galileo Galilei, citizen of Venice and discoverer of the four moons of Jupiter, hereby claim sole and exclusive property rights to the said Medecan Moons. Persons wishing to view the moons are required to pay license fees to myself, at the Sidereal Messenger Co., Inc, Ltd, etc. Persons taking an Unauthorized Peek at said Moons will be flogged and burnt at the stake, as is common in these times.

    How far can science go when the entire basis, i.e., free exchange of ideas and information, is stifled? With no way to exchange information, scientific dialogue shuts down, and progress comes to a halt. Whether this is caused by cultural disapproval of those ideas (i.e., look up WWII Germany and the unreasoning prejudice against Einstein) or by simple greed, the effect is the same.

    Einstein, by the way, believed that a physicist (and by extension, any other scientist) should give his ideas away to humanity for free. I think for that among many other reasons (Relativity) he remains the greatest scientist that has ever lived. . .

  10. Re:Impossible task by Samrobb · · Score: 4

    This is impossible. You cannot remove the profit motive from scientific research except in periods of war or other danger.

    Unfortunately for your argument, as the U.S. Human Genome Project home page points out,

    Begun in 1990, the U.S. Human Genome Project is a 13-year effort coordinated by the U.S. Department of Energy and the National Institutes of Health.

    Aparently, there is no profit motive here... instead, there is a rare glimpse into a government (well, OK, pone government, but I suspect other countries of the same benevolence) actually doing what most people think it should do: support and enhance the common good. Let's stop and savor that for a moment...

    Mmmmmmmmm.

    OK, that out of the way, I have to admit that in some senses, you're right. For the individual researchers on the project, this is the meal ticket! The mother lode! After working on this baby, they'll be able to get a job anywhere in the industry... as long as their work is recognized. As long as other people can examine it and judge it as worthy. As long as it is - dare I say it? - open .

    Look at the Human Genome Project not as an excercise in biotechnology, but a bunch of gene hackers trying to earn a reputation and build something they can be proud of, and I think you'll find a lot of parallels between these folks and the ones who created the foundation of the internet lo so many moons ago.

    --
    "Great men are not always wise: neither do the aged understand judgement." Job 32:9
  11. Socialized medicine by Tim+Behrendsen · · Score: 4

    Disclaimer: I'm a shareholder in CRA.

    I think there's a more general point to be made about this, beyond the matter of Gene Patents. When I read these articles, I sense an attitude of "we need to get the profit out of medicine, so we can help more people." This is just ludicrious, and is one of the reasons that socialized medicine is a failure wherever it's tried. There's a reason that the US has by far the best health care in the world, and by far the best medical research in the world.

    It's called profit. Sure, we could force CRA to throw away the millions of dollars they've spent in indexing the genome faster than anyone else. But that would not be in the best interest of society, because that sets a precedent that anyone who comes up with an innovation will have it deemed in "society's best interest" and be pressured to put in the public domain. Who needs the abuse?

    We are far better off letting the market be efficient, and letting companies like CRA and others do what they do best -- which is innovate in the area of genetics. CRA is not going to hoard the information, they are going to license it.

    We will get results far, far faster letting the free market do the work with normal economic incentives, rather than letting a bunch of government researchers take decades to do something with the information.


    --

  12. They are not patenting the sequences. by Dirtside · · Score: 4
    The patents that have been issued on the human genome are not patents for the sequences themselves; they are patents for processes of testing for the PRESENCE of those sequences. In theory this wouldn't be a problem, except that the patents that are being granted are patents for *ANY PROCESS* that tests for the presence of those sequences, not any particular process. So it's wrong, but not for the reason everyone seems to think.

    Also, there are two competing gene projects. One is the Human Genome Project, which is publicly funded and all of whose results are immediately put into the public domain; the other is run (mostly) by a private corporation called Celera Genomics, partnered with other companies. They're the ones getting the patents, which hopefully will be thrown out.

    --
    "Destroy science and religion. Science would re-emerge exactly the same; but not religion." - Penn Jillette, paraphrased
  13. Exactly. Now the REAL concern here is ... by P_Simm · · Score: 4
    The article discusses Celera and the HGP sharing information on the maps they've made, so as to build on each other's information and finish their projects earlier.

    Now, if Celera gives full disclosure of their databases to the HGP, and the HGP uses that information to refine their own map, and the HGP's map is given out to researchers for FREE, then what does Celera have left to gain financially from their work? This is the real concern - for Celera to profit from this initiative, they by definition HAVE to retain some information from HGP, or else get the HGP to agree to some form of non-disclosure.

    This article had nothing to do with genome patents (although if they're out there, they should be a concern of course). It's a scenario where corporate collaboration with a non-profit project could end up forcing the non-profit group to have limits placed on what information they can release, and how fully they can benefit the public.

    --

    You know what to do with the HELLO.
    Help create an open-source world ...

  14. It should be patented! by meckardt · · Score: 4

    After all, didn't those guys INVENT the human genome?

    What? They didn't? They discovered it then, huh? That counts for something...

    Didn't do that either? You mean all they did was make a record of something that's been around for millions of years, and that we've known about for most of a century?

    Sure, that discovery is worth something. Not sure what... A six pack of beer maybe...


    Gonzo
  15. Not this again! by Otter · · Score: 5
    The last time a gene patenting issue came up, I had an email exchange with Hemos encouraging him to describe the situation more accurately in his postings. Now we get another story and all 13 nonzero comments, as of this writing, have the same misconceptions about gene patenting. So let's try this again:

    • Genes are not patentable - applications based on a gene sequence are
    • No, no one can patent blue eyes and charge you a royalty fee
    • No, you can't just sequence a gene and get patent rights on it. You have to do something with it. The standard of "doing something" needs to be defined better and probably set higher, but the idea that somebody will "own the genome" is false.
    • What is patentable is identifying the role of a sequence in a disease and charging a royalty for diagnostics or therapies based on that sequence
    • The fact that the article describes Celera as a "longstanding" competitor to the Genome Project makes me question the quality of the journalism there. Of course, so does the fact that it appeared in Wired.


    • Maybe we can get an Everything listing to explain these things in genome-related stories, instead of the same misconceptions popping up every time.
  16. Gee, Gnome by Seumas · · Score: 5
    I was of the understanding that the human genome project was funded and overseen by the United States Department of Energy? Doesn't this more or less nullify patenting of that information?

    How can you patent the mapping of the human genome? That's like patenting the mapping of the North American continent. Perhaps you can copyright a specific map that you've designed and drawn of the continent, but patent it?

    I can understand patenting a specific process they may have used, which may be unique, to uncover and map the human genomes, but not the map itself. If they copyrighted the map, though, I would understand. That would also leave it open to other people and organizations to produce their own maps -- just like countless people have produced and released maps of North America. None of them are breaking any patent or copyright law by doing so.

    I do not see any right given here beyond copyrighting this information. And doing so would not prevent anyone in the world from creating new technologies and treatments with this information. If they used this information, they would need to pay for it -- just like I would have to pay for acopy of Rand Mcnally's Road Atlas if I wanted to plan a trip across the country. McNally neither owns the country or the right to make maps of the country. But they do own a copyright on the individual map I am using to make my trip.

    I would think that anyone who wants to make their own map of the human genome would be welcome to. They could then copyright or GPL their map -- or whatever else they wish to do with it.

    I admit that this project brings amazing information and possibilities within our grasp, but we all must also admit that this was no trivial thing. This is a massive project which has taken massive funding and hundreds of man-years (minimally) to accomplish. If this was a private endeavor, it should be that private orgnaization's right to distribute and limit the information however they wish. If, however, the project was largely a public/government undertaking (as has always been my understanding) then this information needs to be freely available without restriction.
    ---
    icq:2057699
    seumas.com

  17. Genomes and maps by ucblockhead · · Score: 5
    Knees are jerking quickly, I'm sure, but people need to understand that there are some rights here that are of concern, but they are not what you think. Not rights to the human genome itself, but rights to a particular map of the human genome.

    Today, maps are copyrighted, and for good reason. If I go out and spend millions surveying an area so that I can print an accurate map, I should be protected by copyright. Another person shouldn't be allowed to xerox my maps and then undercut my price. I deserve to be compensated for my investment. I don't own the information the maps are based on (the locations of cities and such). I own the my particular collection of it. While no own can legally copy my maps, they can go survey the area themselves and produce their own map. I suspect most people would find that eminantly fair. The person who does the work gets the money.

    This is really no different. If Cerela creates a map of the human genome, they deserve the right to copyright their database of the human genome. That is only fair. However, they do not deserve the right to copyright the human genome itself. And, AFAIK, they aren't trying to.

    In other words, if you want a copy of what Celera did, you should have to pay them. That is only fair. If you don't want to pay them, then you are perfectly free to extract your own DNA and create your own map of the human genome. They can't stop you. You can then sell your database, which you can certainly copyright yourself.

    This is no different from geographical maps. No one "owns" the arrangement of geographical features in the world. Lots of mapmakers own their own particular collection of data concerning those features. That's the difference.

    Perhaps a better example: If I write a book that describes the Linux kernel in detail, I can certainly copyright that description and charge whatever the hell I want for it. No one, not even Linus, can stop me. However, what I've copyrighted is my description of the Linux kernel, not the Linux kernel itself. This is no different. What Celera is talking about is not copyrighting the human genome, but copyrighting their description of the human genome.

    --
    The cake is a pie