If Open Sharing Of Data Is A Great Idea For Combatting A Dangerous Plant Disease, Why Not For All Human Diseases?

from the won't-somebody-think-of-the-wheat? dept

Wheat blast may not be uppermost in the minds of many Techdirt readers, but as the following explains, it's a serious plant disease that is spreading around the world:

Wheat blast is a fearsome fungal disease of wheat. It was first discovered in Paraná State of Brazil in 1985. It spread rapidly to other South American countries such as Colombia, Bolivia, Paraguay, and Argentina, where it infects up to 3 million hectares and causes serious crop losses. Wheat blast was also detected in Kentucky, USA, in 2011.

Wheat blast is caused by a fungus known as Magnaporthe oryzae although scientists are still debating its exact identity. There is a risk that wheat blast could expand beyond South America and threaten food security in wheat growing areas in Asia and Africa.
That comes from an interesting site called Open Wheat Blast. It's been set up by a group of scientists who want to help combat the threat of wheat blast. And as their name suggests, they hope to do that by sharing data as widely as possible:
To rapidly respond to this emergency, our team is making genetic data for the wheat blast pathogen available via this website and we are inviting others to do the same. Our goal is that the OpenWheatBlast website will provide a hub for information, collaboration and comment. Collectively, we can better exploit the genetic sequences and answer important questions about the nature of the pathogen and disease.
That's such a self-evidently sensible thing to do, the obvious question to ask is: why isn't this done routinely -- and for human diseases too? In fact, a couple of months ago, 33 global health bodies signed a "Statement on data sharing in public health emergencies," with particular emphasis on sharing data about the Zika virus:
The arguments for sharing data, and the consequences of not doing so, have been thrown into stark relief by the Ebola and Zika outbreaks.

In the context of a public health emergency of international concern, there is an imperative on all parties to make any information available that might have value in combatting the crisis.

We are committed to working in partnership to ensure that the global response to public health emergencies is informed by the best available research evidence and data
That declaration built on a "consensus statement" that came out of World Health Organization consultation on "Developing global norms for sharing data and results during public health emergencies" in September 2015. One of the summary points spells out the key issue holding back open sharing of key information:
WHO seeks a paradigm shift in the approach to information sharing in emergencies, from one limited by embargoes set for publication timelines, to open sharing using modern fit-for-purpose pre-publication platforms. Researchers, journals and funders will need to engage fully for this paradigm shift to occur.
As that makes clear, a big problem is the way that results are published, with researchers and publishers more interested in keeping their results under wraps for a while than spreading them widely and quickly. And there's another issue too:
Patents on natural genome sequences could be inhibitory for further research and product development. Research entities should exercise discretion in patenting and licensing genome-related inventions so as not to inhibit product development and to ensure appropriate benefit sharing.
It's a rather sad state of affairs when publishing concerns and patents are getting in the way of producing treatments and cures for serious human diseases that could improve the lives of millions of people. Protecting crops from wheat blast is, of course, welcome, but is it really the best we can do?

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Filed Under: data sharing, diseases, open access, patents, research, wheat blast


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  • identicon
    Anonymous Coward, 3 May 2016 @ 1:08am

    In general terms, the goal of pharmaceutical companies isn't to cure disease, rather it is to make money off the suffering of the afflicted.

    See also drug expiry, Martin Shkreli and Pharmac (1)(2)

    reply to this | link to this | view in chronology ]

  • identicon
    Anonymous Coward, 3 May 2016 @ 2:34am

    It's all in the genes

    Given the current state of modern crop management controlling any information of how a certain virus operates is worth billions. Because using non altered, natural seeds was made illegal in many parts of the world the big companies want to control such information.

    The same goes for humans. Various life saving drugs are known to human kind and could safe millions of lives each year. But the people who need them aren't allowed to buy them because they can not afford them. Paying 5 times your annually wage simply means you are not allowed to buy it.
    Over the past decade pharma has done everything in their power to prohibit any competition in a low income market.


    If you want to end this then fight fire with fire. Patent, trademark, and/or copyright your genome. A huge amount of patents are based on genetic manipulations which are present in quite a few humans. By protecting your genes you prevent corporations from patenting them and might save a life or two.

    reply to this | link to this | view in chronology ]

  • identicon
    Capt ICE Enforcer, 3 May 2016 @ 3:29am

    Why copyright of course

    Well, if majority of wheat is destroyed then the authors copyright would be drastically cut short. So the reason for being concerned about wheat is only to keep mass copyright extended. A few dead copyright authors though has little affect on the whole. Which is why doing this for human disease would be silly.

    reply to this | link to this | view in chronology ]

  • identicon
    Anonymous Coward, 3 May 2016 @ 4:27am

    Re:

    Thanks for your informative post. While I don't need any of the services you mention, I sure could use a service to stop spam.

    reply to this | link to this | view in chronology ]

  • identicon
    Anonymous Coward, 3 May 2016 @ 7:38am

    If the real goal of the healthcare/pharmaceutical industry was to actually cure human diseases they absolutely would be doing a lot more sharing like these scientist are doing with Wheat blast. But that hasn't been their goal for a very long time now, it's far more profitable to only treat than to cure and the many patents along the treatment road make it that much more profitable.

    reply to this | link to this | view in chronology ]

  • icon
    Ninja (profile), 3 May 2016 @ 8:33am

    If many things where researched and made public we'd be way ahead in technological evolution than we are now. Then put everything in the 'patent' pool and those who participated get a proportional piece of the pool plus the vanguard. Simple as that.

    reply to this | link to this | view in chronology ]

  • identicon
    Anonymous Coward, 3 May 2016 @ 10:02am

    Just wait until Monsanto patents wheat blast...

    Then they will sue everyone for patent infringement for trying to stop it. Of course they will also use their patent to introduce "Monsanto Wheat Blast Proof Wheat Seed" that can only be purchased from them and you can't use your own seed to replant the next year.

    Once they successfully eliminate all the "free wheat" they will increase the price each year and sue anybody who doesn't buy seed from them, just because they can.

    But I'm sure this disease isn't something they started and are spreading to hasten their monopoly position... that would be just evil...

    reply to this | link to this | view in chronology ]


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