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.
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:
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.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.
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:
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 dataWHO 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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See also drug expiry, Martin Shkreli and Pharmac (1)(2)
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It's all in the genes
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.
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Why copyright of course
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Re:
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Just wait until Monsanto patents wheat blast...
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...
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