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Company Gains Research Rights To Tongan Genome

spam_it_to_me_baby writes: "An Australian listed company, Autogen, has acquired research rights to the Kingdom of Tonga's gene pool. The Pacific island's 108,000 residents will be used by the company to identify genes that cause common diseases. Autogen says serum or DNA samples collected in Tonga shall remain the property of Tonga, while Autogen will build the genetic database on which the research will be based. More here." Similar to research going to collect the genetic information of everyone in Iceland, another place with a winning combination of low population and historical isolation. A single company (Decode) also won the "rights" to that information, for a mere $200 million.

35 of 108 comments (clear)

  1. Re:genetic copyrights? by Sheeple+Police · · Score: 2

    As various others have mentioned, the sad reality is that the government is an elite ruling family.

    As for your questions about the United States, where would you find protection from such DNA mapping? I would no doubt expect someone would take the US Government to court (esp in this modern litiginous society) if they were to try it, but do any real laws prevent them?

    As for fingerprints when you are born, AFAIK, your fingers are not sufficiently developed w/ regards to the skin, and thus your fingerprint wouldn't really work. And if they were to use ink, instead of the only-recently introduced optical biometric scanners, then the potential for ink with such small channels being between the rings is too great to get an accurate sample. Small fingers are much harder to measure.

    In light of all of this, I'm reminded of the one-funny joke which now brings back a rather sour aftertaste....
    Just because you are paranoid doesn't mean they aren't after you


    --

    Information is the catalyst for revolution
  2. The Brits are already there, dude... by The+Dodger · · Score: 2
  3. Re:So that'd be genome.to would it? by Sheeple+Police · · Score: 2


    Makes ya wonder if Faust was Tongan
    </allusion>

    --

    Information is the catalyst for revolution
  4. Re:So that'd be genome.to would it? by snookums · · Score: 3

    In case you are unaware, Tonga is an extremely poor country.

    The "autocratic monarchy" derided in other posts are really not the uncaring sycophants that people might think. I happen to know someone related to the Tongan royal family (who lives in Australia) and he is one of the kindest, most honest and genuine men that I have met. He regularly involves himself in fund-raising activities to better the lives of the people in his home village in Tonga.

    I believe that the sale of a TLD, and some anonymous scientific data is a very wise revenue-raising decision for a developing nation to make.

    --
    Be careful. People in masks cannot be trusted.
  5. Kill them all (corrected) by Pseudonymus+Bosch · · Score: 2

    As they used to say during the Counterreformation,
    Kill them all, and let God sort them out.


    According to some discussions, it was during the , a (now) Southern French fortress of the Albigensians, 13th century, I think.
    __

    --
    __
    Men with no respect for life must never be allowed to control the ultimate instruments of death.
    GW Bu
  6. Re:The Israelis have already thought of this... by Elvis+Maximus · · Score: 3

    My memory on this is a little fuzzy, but I believe the genetic sequence the Israeli researchers were said to have sought and found was specific to certain communities of Iraqis.

    IIRC they had gotten as far as identifying the sequences they would need to exploit to engineer an Iraqi-specific disease, but had not figured out how to exploit those sequences. A major sticking point was how to distinguish Iraqi Arabs from Sephardi Jews of Iraqi background; I don't recall whether this problem was resolved or not.

    In fairness to the Israelis, it is worth noting that there was a tremendous uproar in the Knesset when this research was made public, and IIRC the plug was pulled at that time. But it is fairly shocking that the Israelis, of all people, would contemplate such a Mengele-esque project.

    And I don't think anyone would be too surprised if research in this vein was still going on in secret.

    I believe similar research was also done in Apartheid-era South Africa.

    -

    --

    -
    Give me liberty or give me something of equal or lesser value from your glossy 32-page catalog.

  7. Re:Are Tongan civil rights eroded? by Nezumi-chan · · Score: 2

    ./ers may not be aware that Tonga still has a autocratic monarchy, with a parliament with a majority of seats guaranteed to noble families. Tongans who want a democratic system tend to find themselves in jail. Looks to me like Autogen has cynically found a jurisdiction with a compliant and corrupt ruling clique. Shame on them.

    Typical bias. Hate to tell you this but monarchy != corrupt regime. The worst criticism of the Tongan system I've been able to find by searching is their refusal to accept a UN report on free speech violations. But big deal, the United States of America does that and worse on a regular basis. For instance, their refusal to live up the UN charter of rights with respect to natives and other issues.

    But this is the same old US-centric view we see over and over here on /. If it isn't a democracy, if someone doesn't hold Free Speech up as a religion, if it's got to do with anyone else in any way, it's demonized.

    Feh. I'm sick of it.

  8. Example of ethics document by Lars+Arvestad · · Score: 2
    Many readers seems worried about the ethical side of the Tonga gene project. As an example of how a company can try to meet those concerns, you may be interested in an ethics document published by a Swedish competitor to Autogen, Uman Genomics.

    Personally, I am not so worried about the privacy aspect of these projects. It seems to me that both deCode and Uman Genomics work hard on solving that problem. More pressing to me is the kind of deals they are making. Is it really right for a society to favour one company before many others when the resources are actually public? This is an old problem in that countries has sold mining rights, fishing rights, and other natural resources for a long time, but we are not talking about a scarce resource here. This is information and it is not expensive or impossible to share that resource with others as long as they can pay.

    And Celera has shown that it is certainly possible to have a business model an a truly open resource: The human genome. No one has exclusive rights to this data, and yet you can make a good business selling it.


    Lars
    __

    --
    Reality or nothing.
    1. Re:Example of ethics document by Lars+Arvestad · · Score: 2
      if the deal can give one a lot of money, be sure that one is going to make it, no matter how much it will cost to the society...

      These projects cannot be done without the cooperation of health authorities, simply because they sit on data (not only samples that you could drive around and collect, but medical records) that are essential to the project.

      if you don't put rule and laws to regulate the market, don' t expect the market to regulate itself!

      Right. And that is why I don't want these health authorities to create monopolies by selling exclusive rights!

      Now, please, let's keep Hitler out of this. OK?

      Lars
      __

      --
      Reality or nothing.
  9. Re:The Israelis have already thought of this... by Pseudonymus+Bosch · · Score: 2

    Allegedly, Israeli scientists have identified certain unique features of the Arab/Palestinians' genome which don't appear in Israelis' genome.

    Would this work? There are lots of Sephardic and Yemeni Jews that lived centuries in contact with Arabs (of course, not all the people in "Arab countries" are genetically Arab, if such thing exists. I think there would be some degree of intermixing, kosher or not.

    as soon as the radiation fades

    How long is it for current neutron bombs?
    __

    --
    __
    Men with no respect for life must never be allowed to control the ultimate instruments of death.
    GW Bu
  10. The tongans gave up their genome? by mwalker · · Score: 2

    The tongans gave up their genome?

    Does this mean we can figure out what's wrong with Jar-Jar? Maybe we can genetically engineer them some smaller ears, too....

  11. When they're done... by H*rus · · Score: 3

    When they are done, maybe they can start mapping the Swiss. They've isolated themselves too and they have this very interesting gene for banking.

    Mark
    "Only two things are infinite, the universe and human stupidity, and I'm not sure about the former."

    --

    - if you love something, set it free; if it doesn't come back, hunt it down and kill it
  12. Facts about Tonga by w00ly_mammoth · · Score: 2

    There are many quirky aspects to the place. The one I remember most about it is that its former king once held the Guinness record for being the world's heavist monarch.

    "When Britain's Prince Charles married Diana, a special chair was built in Westminster Abbey for the King of Tonga. At his heaviest, in 1976, he weighed 462 pounds. By 1993, he had slimmed down to a slender 280 pounds."

    Another thing I remember reading is that there's an age old custom - when the king walks around, people are supposed to be at a height below him. So apparently those around him fall down like ninepins when he goes around.

    Here's a pic of him. He looks kinda like a l33t p1mp.

    Tonga is also responsible for all those .to websites . One of the fastest to capitalize on the domain name craze, they did WAY better than the far more naive and ethical people of Tuvalu, who only recently started selling their .tv stuff, after a melodramatic business plan gone bad.

    Tonga and its king inspire the kind of satirical lunacy that the teletubbies normally do.

    w/m

  13. Re:Creepy by Black+Parrot · · Score: 2
    > How would they be able to find something that ONLY applies to Tongans and not anyone else?

    As they used to say during the Counterreformation,
    Kill them all, and let God sort them out.
    --
    Sheesh, evil *and* a jerk. -- Jade
  14. Re:Are Tongan civil rights eroded? by Lars+Arvestad · · Score: 2
    What I responded to was the implication that this was possible because "Autogen has cynically found a jurisdiction with a compliant and corrupt ruling clique." (judd). The original pressrelease is too lacking in information to deduce that people's rights has not been defended.

    You are also not understanding what they are selling in Iceland and Sweden. It is not your genes or genome that is taken away from you; You can take it to anyone else to sell it or whatever. The deal is about the exlusive cooperation of healt authorities and the access to data and statistics that same authorities have collected.

    One controversial issue is of course whether anonymous medical records belong to the originator or not. Representants of the people(s) have decided that is OK, but understanding it is a controversial issue, and very much an issue of trust, they have made it possible for people not to participate. I don't understand what more you can ask for.

    What is really debatable is whether a government should be able to sell those publicly owned rights to one single company, shutting out everyone else.


    Lars
    __

    --
    Reality or nothing.
  15. Are Tongan civil rights eroded? by judd · · Score: 5

    I note that apparently Autogen has exclusive rights over all samples collected in Tonga, which in turn belong to Tonga.

    So if Jonah Lomu gives blood in New Zealand, it belongs to him. If he goes home to Tonga, all rights over it belong to Autogen.

    ./ers may not be aware that Tonga still has a autocratic monarchy, with a parliament with a majority of seats guaranteed to noble families. Tongans who want a democratic system tend to find themselves in jail. Looks to me like Autogen has cynically found a jurisdiction with a compliant and corrupt ruling clique. Shame on them.

    1. Re:Are Tongan civil rights eroded? by Lars+Arvestad · · Score: 4
      Deals like this can also be made in democracies. As mentioned, Iceland's deCODE struck a deal with the Icelandic government, giving them exlusive rights (time limited, I think) to commercialize the data. The public health system in a part of Sweden has done the same with a comany called Uman Genomics. Here, the company gains access to anonymized public health records. I think there is a similar initiative in Estonia.

      Technically, I think the samples belongs the one collecting them. What these companies buy is the exlusive cooperation with public healt authorities. Presumably, Jonah donates blood to a company which also collects genealogy info, it would all be in order. However, without clinical records, this information will no be so valuable.

      The deal seems good to me. A crucial fact is that Autogen is setting up a facility in Tonga, instead of shipping all the samples to Australia.
      Lars
      __

      --
      Reality or nothing.
    2. Re:Are Tongan civil rights eroded? by judd · · Score: 4

      "monarchy != corrupt regime".

      Indeed not. But this one certainly has been. If you haven't found anything by searching, you haven't looked very far.

      A simple search on Google for Tonga and Corruption yields this:

      1. Imprisonment of dissenting journalists.
      http://www.transparency.de/documents/newsletter/ 98.2/reports.html
      2. Passports and citizenship are sold to foreign nationals.
      http://sunsite.anu.edu.au/spin/SPINDOC/larmour97 1.html
      3. The current land minister has been convicted of illegal land transfer deals in the 80s. Critics of his appointment as minister were imprisoned.
      http://www.tongatapu.net.to/tonga/news/briefs/ss 980319.htm
      4. The king dissolved the parliament after it voted to impeach the minister for corruption.
      http://jinx.sistm.unsw.edu.au/~greenlft/1996/250 /250p2b.htm

      Etc.

      I am not an American. I'm a New Zealander. (And I'm far from impressed with American efforts in the South Pacific thus far. Had there been an article about American Samoa, Kiribati, Paula, the Marshall Islands, etc, you would have seen criticism of US policy from me.)

      As it is, New Zealand has a large Tongan minority and Tongan affairs are commonly in the news here. I strongly suspect I'm better informed than you are.

    3. Re:Are Tongan civil rights eroded? by judd · · Score: 3

      > But your white aren't you?

      How can you tell? Suppose I'm an indigenous Australian? Would that change your view?
      What about if I were Japanese?

      >You are subconcious racist, you write harmful things without even realizing it.

      How was what I wrote harmful? To whom, precisely? If it was harmful to King Tupou, then I can't say I'm very sorry.

      > Only with long and painful process of soulsearching and admission of (historical) guilt can a white learn to live as a world citizen in a colorblind multicultural world.

      If you want to live in a colourblind world, you sure have a funny way of showing it :-)

    4. Re:Are Tongan civil rights eroded? by Hard_Code · · Score: 2

      The difference is, in a democracy, people have *elected*, have chosen, to sell these rights. Under a monarchy or dictatorship they might not be able to. Many corrupt or dictatorial governments either look the other way, or gladly participate in the exploitation of their own people (sweatshops, coffee bean harvesting, etc. etc.). The difference is that democracies supposedly have a choice. Sucks to be you if you're stuck under a dictatorship that sells a big corporation rights to your labor, genes, etc.

      --

      It's 10 PM. Do you know if you're un-American?
  16. Can you believe this? by Sheeple+Police · · Score: 3

    I almost wonder if this shouldn't be an issue of human rights... What you have is a government basically selling out the individual rights of the populace for $200 million - which, if you read the article, will go the the Ministry of Health - owned by the government.....

    Rather than sell their people into slavery, something clearly socially and morally unacceptable, they are essentially selling the people into a life of lab-monkeying. I'm sorry, but where is the outcry? When commercialization and trampling of human rights combine, it only makes me fear the day of MegaCorp (also known to some psychics as Microsoft) owning our governments.....

    --

    Information is the catalyst for revolution
    1. Re:Can you believe this? by judd · · Score: 2

      For "government" read "Tongan Royal Family", doing what aristocrats do best.

  17. Re:God's laughing at us. Gosh, this is just funny. by Logi · · Score: 2
    In other words, if I'm a poor Tongan or Icelander, do I get paid for my gene info, or is it taken by the government who has already been paid?

    I don't know how things work in Tonga, I don't even know where it is on the map. I do know something about how things work in Iceland (but not all the details) since I am not only an Icelander, but work in computer security for Íslensk Erfðagreining, the Icelandic daughter company of Decode Genetics. Of course, nothing I say is official in any way. In fact I'm probably just making the lot up.

    Here, no company has exclusive rights to do genetic research. No company has the right to take samples from an individual without their consent. The government (democratically elected, high voter turnout, no infinitely iterated recounts needed) agreed to the deal. What was sold was not the people's genome, but access to medical health information already collected. You may also opt out of the database, f.ex. by mailing the free-postage form that was sent to every person in the country.

    First, any personally identifying information is removed from the data. Second, the data is stored in sealed rooms with camera surveilance and all code which has access to the data is validated by a third party. Third, the code must never return result sets with fewer than a specified number of people. I.e. it is very difficult to use rare traits to get additional information about a person or a small group of people.

    The security requirements are incredible. If banks had to adhere to these kinds of standards, I think they'd just decide it wasn't worth the effort and close. We're required to use 10000 bit RSA keys, for example (I wonder if they'd accept 8192 bits keys?) which is just preposterous. But I expect the result will be secure.

    I think that, assuming you want to allow large-scale statistical research of this kind at all, it is being done the right way in Iceland. I wouldn't want to guess about Tonga.

    --
    Logi - I can do anything, but not everything.
  18. Re:Creepy by Sheeple+Police · · Score: 2

    The problem is that 96% of the genetic code is shared between humans and monkeys alone, and current studies suggest that only you are only 1% distinct of that 4% from the person sitting next to you. In addition, like was said before, you would first have to map a 'control' population in order to understand the 'ideal' genetic code, and then compare the 'ideal' with the Tongans to isolate differences (empirically derived is the term), and then find some way to alter a virus to target the strands.

    However, the very nature of the virus to attack a cell makes it nearly impossible to 'program' a virus to selectively attack cells which posses a certain DNA strand. To draw an analogy, it would be like being shown 3 identical black boxes, and that one of these has a bomb in them, and that you must get rid of it. But, add in the effect that touching the 'bomb box' will set it off, killing you, and it makes it nearly impossible to use some method to identify it.

    However, if the Tongans posessed something not genetically different but biochemically different, such as the presence of a minimum amount of such and such hormone, or the presence of some third-party cell/virus/bacteria within them all, then you could 'program' a virus to be such that. But I'm sure you'll find such a correlation between all Tongan's a statisical near-impossibility.

    --

    Information is the catalyst for revolution
  19. Re:who does enforcement? by Logi · · Score: 2
    I don't know how things work in Tonga. In Iceland, no-one is sampled simply because The Company wants a sample. This would be absurd, we're a democratic country.

    If, however, a sample has been taken for some reason and stored with your medical records, a copy of this would be sent to Decode along with your other records, but without personally identifying information. I.e. there would be a DNA sample and a medical history. Given a large number of these, you could statisticaly find genes that are likely to be related to particular diseases.

    Well, unless the person opts out, in which case those data would not be used for research.

    --
    Logi - I can do anything, but not everything.
  20. GATTACA soon? by peter303 · · Score: 2

    The move GATACCA (pun of DNA notation) had hand gizmos that could check genetic identity in seconds. Currently, a crime scene gene analysis looks at several dozen gene markers, takes a couple weeks and costs a thousand dollars. But will it be faster?
    First, there are companies making nanotechnology highly parallel gene analyzers. They borrow chip circuit technology and put tens of thousands simple sequences on single device.
    Second, is what to analyze for? Part II of the genome project is to look for the *differences* in coding between humans. That amount is estimated to be about 0.1% of the 3% non-junk genes, or one hundred thousand base pairs.
    Given that Moore's Law seems to apply to all information technologies, I suspect both problems will make great progress in the next couple decades toward a GATTACA device.

  21. Re:Creepy by KjetilK · · Score: 2

    IANAG, but I think this won't work. The most important thing is that viruses mutate and change so fast it'll probably strike back. Another concern is that humans are so alike genetically, it'll be very difficult to find something that hits only an ethnic group. That being said, selling a national genome seems like a Bad Idea [tm]. What they are hoping to get out of it, is probably more medical attention, but they are going to get quite a lot unwanted attention too, I suspect...

    --
    Employee of Inrupt, Project Release Manager and Community Manager for Solid
  22. Re:The Israelis have already thought of this... by TheSync · · Score: 2

    Would this work? There are lots of Sephardic and Yemeni Jews that lived centuries in contact with Arabs

    Well, during the Crusades, the Europeans killed Arab Christians along with Muslims. I suppose they thought they were all the "infidel"!

    A closer examination reveals that religion is often used as an excuse by the greedy to acquire property (see Salem Witch Trials, Spanish Inquisition, Holocaust, Crusades, current Israel occupied territories).

  23. Lactose Intolerance by voidzero · · Score: 2
    I believe similar research was also done in Apartheid-era South Africa.
    I believe that the genes targeted were those which caused lactose intolerance in Africans, but not in the majority of Caucasians.

    More information on this nefarious research is available in the article Ethnic Weapons For Ethnic Cleansing

    Regret for the past
    Is a waste of spirit

  24. So that'd be genome.to would it? by matthew.thompson · · Score: 4
    They're selling their Country Specific TLD, their genome

    IS there anything that these tongan's won't sell?

    --
    Matt Thompson - Actuality - Insert product here.
  25. Re:Selective Reproduction? by Sheeple+Police · · Score: 4

    If I had my psych notes, I could give you exact studies and what not, but this whole concept of selective breeding was explored by a psychologist, named Sheldon, under the guise that he was 'measuring body types'... the whole concept of ectomorph/endomorph/mesomorph was his classification for these, and through measuring Ivy League students (male and female) as they were accepted, he was trying to pattern the necessities for breeding an elite race of 'super-geeks' (I say geeks because they were Ivy Leaguers, but mind you, I know they were not *true* geeks, or at least not the LARGE majority).

    In either event, I don't quite remember what happened to him after that. Either there was a public cry much like that against Frankenstein's monster... or there was apathy... either way, I wouldn't place it very far in the future, with such atrocities occuring....

    Mind you, this was primitive studies, and in today's world of DNA manipulation and understanding, with the human genome mapped, you really have to wonder if there won't be some Neo-Sheldon who will attempt such a thing. I suspect it would be someone with a large amount of money and the guise of helping the public...

    and his name shall be Bill, for he shall be evil.

    --

    Information is the catalyst for revolution
  26. Morons all. by Shoeboy · · Score: 2

    If you want to study a very shallow and restricted gene pool you don't go to Tonga or Iceland, you go to Mississippi.
    When will they learn?
    --Shoeboy

  27. In other news... by VValdo · · Score: 3
    • NASA has purchased exclusive ownership of the positions of stars in the Andromeda Galaxy as well as all data regarding black holes and supernovas within 300,000 light years of Earth.
    • Information referring to the number of "stars of the heavens" and "the sand which is on the seashore" have been awarded to the natural sciences in a lawsuit against the omniciant almighty God (Lord vs. Descartes, 1624 p.23).
    • PiGen, the supercomputer supercompany have had their patent upheld on the previously undiscovered digits "32509328202" contained deep within "pi." The courts are expected to rule on whether people using circles, including donut shops, beachball makers, automobile manufacturers, and the Frisbee company (FRZB), are infringing.
    • The Madagascan ring-tailed lemur is demanding compensation from humans for "clear and blatant theft of gene-based opposable thumb technology."
    • Noam Chomsky is now enforcing his patent on the "lingustic genome," including most verbs, awarded after he demonstrated that communication via language is "the result of the unfolding of a genetically determined program." ( Interview to KBS TV, Kyoto, Japan )
    • The Children's Television Workshop has begun charging a license fee for commercial use of the letter "E" and the number "4." Consonants for the moment continue to be free.

    -------------------
    --
    -------------------
    This is my SIG. There are many like it, but this one is mine.
  28. The Israelis have already thought of this... by The+Dodger · · Score: 4

    Allegedly, Israeli scientists have identified certain unique features of the Arab/Palestinians' genome which don't appear in Israelis' genome.

    And this is in a country where a significant fraction of the population believe that the only bad thing about nuking the West Bank would be the radioactive fallout that would drift across the border in Israel. Of course, on the other hand, you have the Arabs, a significant fraction of whom think that driving Israel into the sea is a perfectly reasonable policy. Fun, fun, fun...

    Come to think of it, I guess that explains why the Israelis were so interested in developing their own neutron bombs. For the uninitiated, neutron bombs (invented by Dr Sam Cohen, who was part of the original Manhattan project, in cased anyone's interested in doing further research) are nuclear devices which, when detonated, generally produce a minimal blast and thermal effect, but they produce a substantial pulse of neutron radiation which penetrates hardened shelters and produces a destructive ionizing effect when it interacts with living tissue. In other words, such a weapon does not destroy buildings as much as it kills people.

    In other words, with a neutron bomb, you can kill everyone in a city, without destroying the city. Get rid of your enemies, and as soon as the radiation fades, move in, clean up the mess and you have a ready-built city. Cool, huh? 'Twas all the rage during the Cold War - any decent superpower just had to have one, dahling...

    Where was I? Oh yeah, genetic ethnic cleansing. I think that the knowledge and technology exists today to engineer a virus that kills only a certain ethnic group. Fortunately, noone seems to have done it yet.

    At least, as far as we know.


    D.
    PS: Yes, I am possibly the most cynical person in the world...

  29. Creepy by Greyfox · · Score: 3
    Once the Tongan genome is mapped, they could engineer a virus that kills only Tongans. Food for thought, when selling your national genome...

    Someone had to put all that chaos there!
    ______ "Our 'n about"
    \_bi_/

    --

    I'm trying to teach myself to set people on fire with my mind... Is it hot in here?