At Outernet256, we believe that free access to information is a human right. The Internet has dramatically enhanced our ability to exercise this right, but unfortunately most humans cannot access the Internet. Today, over 4.3 billion people cannot connect to the Internet at all and another roughly 1 billion people have their Internet connections censored or monitored. A world where only 20% of humans have truly free access to digital information is unacceptable. That is why we support the creation of Humanity’s Public Library, an initiative by Outernet.
Outernet broadcasts a data signal from satellites that is free to receive anywhere on Earth. While this is not an Internet connection, it is a free stream of critical information. What information is considered “critical?” You decide.
Outernet256 and Creative Commons Uganda are co-hosting the first edit-a-thon for Humanity’s Public Library on July 18-19 2015, at Victoria University, alongside #MozFestEA to decide what is included in this library. Anyone on Earth is encouraged to participate – details on how to have your voice heard in this process can be found at http://editathon.outernet.is. We want to encourage our users to submit their own work and to submit content from Outernet256 that is licensed for redistribution. One such work is this very blog post. Copy these words and post them on your own blog and let’s all gather together and build a #LibraryFromSpace.
This blog post is licensed under CC0 and is free to be distributed and edited without restriction.
Former UN Secretary General, Kofi Annan once said, “…health will finally be seen not as a blessing to be wished for, but as a human right to be fought for ”
A Medical Research company might own, at most, the intellectual property underlying its genetic test; and, because the research and development needed to develop the test may have cost a considerable amount, the firm might rightly charge for administering it. That seems fair, right?
Intellectual Property Rights are rights given to persons over the creations of their minds. They usually give the creator an exclusive right over the use of his/her inventive creation (literary and artistic works, Symbols, Names, Images, Designs) for a certain period of time, usually as a bargain that the outcomes of the rights will benefit society.
But a Utah-based company, Myriad Genetics, now intends to claim more than just the tests they helped to discover – they now claim to own the rights to any test for the presence of the two critical genes associated with breast cancer – and have every intention of ruthlessly enforcing these rights. A similar, and more advanced test for Breast Cancer genes was developed by Yale University, who are also willing to share this at a much lower cost.
We need to appreciate advances in Medicine, and the fact that these come from men and women who spend hundreds of hours in research labs, testing and pivoting their results, to perfection. We need them to be thorough, so that when their inventions are out of the test-tube, they can save life! Companies like Myriad wish to block advances in testing by other researchers in a bid to protect their rights to the tests, and as such with every passing day, another life will be lost for lack of a perfected, cheaper test for Breast Cancer, HIV, Malaria, you name it. The desire to protect rights is now the cause of the very lives it intended to enrich when Myriad first went into the Lab.
How did we end up here? Well, Uganda has been a member of the WTO since 1 Jan 1995, See our FootPrint. In effect this means that we comply with the rules of the World Trade Organization, part of which are Intellectual Property Rights, and most recently, Trade Related Aspects of IPRs (a.k.a The TRIPS Agreement – Full Text for the legalese, and FAQs)
So why the fuss about your genes? Well, you see, its important and only fair to reward innovation – and Patents, Industrial designs, Trademarks, Geographical Indications, Trade Secrets, Copyrights (For works of Art), Sui Generis Systems (for Electronics like Integrated Circuits) and Plant Breeders’ rights – are all valid and proper ways to recognize and reward such innovation. But there must be a line between your innovation and how it can actually be used by the society.
The reason India remains a supplier of most medicines is that in their Patents Act, 1970 (For pharmaceuticals and agrochemicals): You can not receive Patent Protection for a product – only the process! And the maximum term? 7 years – that’s why their prices are the lowest in the world and they continue to supply generic drugs to a lot of nations. To this day, they protect the social benefits ahead of anything else – See Recent Supreme Court Ruling
That is an example of a trade off that is instituted by the law – such a trade off appears to make for weaker Intellectual Property Rights, BUT, ensures better social benefits for the billions of earthlings able to access Indian manufactured drugs. In the Myriad case, there is already a globally funded Human Genome Project, and Researchers like Myriad benefit from the knowledge arising out of such “public good” only to run around and arm-twist us into awarding them more protection in patents.
Perhaps a worse problem is that in developing countries and LDCs, most patent holders are foreigners which means what is being protected is foreign owned property. For example, 91% of patents granted in Malaysia in 2008 were to foreigners and this trend has been constant. Between 1991 and 2004 only 20 patents were granted to applicants from LDCs (compared to 1.8 million patents granted to developed countries).
So is the current patent system good? Bad? Terrible? Does it actually encourage or stifle innovation? In Flash of Genius, 2008, the professor who sues FORD for infringing on his Intellectual Properties in the design of that all important car wiper, defended himself using this analogy: That whereas Shakespeare did not invent the English language, nor the words of the English language, not even the alphabet, his works cannot be claimed by anyone in the world – its to his credit that he arranged the letters of words, in some of the world’s most famous prose!
So why does Myriad want to patent my genes? Am almost certain Myriad did not invent the technologies used to analyze the genes, and even doubly sure, that had these technologies been patented themselves, Myriad might not have made its discoveries. But most importantly, if Myriad wins this case, how else will other researchers be able to use the “public knowledge” therein to develop better and more accurate tests? What future does such a landmark case secure? Moreover, what future does it guarantee for Least Developing Countries?
All research is based on prior research. A poorly designed patent system – like the one we have now – can inhibit follow-on research. That is why we do not allow patents for basic insights in mathematics. And it is why research shows that patenting genes actually reduces the production of new knowledge about genes: the most important input in the production of new knowledge is prior knowledge, to which patents inhibit access.
Fortunately, what motivates most significant advances in knowledge is not profit, but the pursuit of knowledge itself. This has been true of all of the trans-formative discoveries and innovations – DNA, transistors, lasers, the Internet, and so on. And knowledge, and the access to it, are and should remain Human Rights!
Sadly, the US and other advanced countries have been pressing for stronger intellectual-property regimes around the world. Such regimes would limit poor countries’ access to the knowledge that they need for their development – and would deny life-saving generic drugs to the hundreds of millions of people who cannot afford the drug companies’ monopoly prices.
Intellectual-property rights are rules that we create – and that are supposed to improve social well-being. But unbalanced intellectual-property regimes result in inefficiencies – including monopoly profits and a failure to maximize the use of knowledge – that impede the pace of innovation. And, as the Myriad case shows, they can even result in unnecessary loss of life.