Human Rights

Global Health Corps – #GHC

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So am all packed up and ready to head home – after 15days at the GHC Training Institute, hosted at the famed Yale University. This past few days, my cheese has moved, in interactions with great people like Barbara Bush, Havard Business School’s Rob Kaplan, and Phil Wilson of the Black AIDS Institute.

And my life has been dramatically changed! I am a Global Health Corp – or rather, simply put:

I belong to a community of young passionate leaders who, now more strongly than ever before, share a common belief that Health is a Human Right. And I believe that I have my own share of the work to use social justice to being about Health Equity.

I embrace the philosophy of active problem solving, and engaging global partnerships in order to bring about real and sustainable change. I need the complete spectrum of life itself, in skills, experiences, and perspectives from people like you in order bring about a serious change in global health.

Architects, Nurses, Computer Scientists and people like You from allover the world – break down walls to unite and enact expertise from all disciplines and backgrounds. Together, we support Global Health Equity Movement.

I am a Challengers, I am a Thinkers, and I am a Change Maker. I am, a Global Health Corp.

More about Global Health Corps

 

My Reactions to the #MediaSiege

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So, today Uganda Government Media Centre, released a statement on the Closure of Daily Monitor and The Red Pepper. In my simple mind, I still need the Minister to explain a few things – – in simple lay man’s language:

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I (could) Own You

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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 ”

The United States Supreme Court has started hearing a case that highlights the role of Intellectual Property Rights for Health and Human Rights. The big issue?  Can human genes – yours and mine – be patented? In lay man’s language, can and should an individual be permitted to own the right to 1,or 2 or even 3 of the building blocks of the human gene? Or can an innovative doctor or lab researcher be given permission to own the right, say, to test whether you have a set of genes that imply a higher than 50% probability of developing breast cancer?
If you are new to the world of Intellectual Properties, perhaps its as clear a NO as the noon-day sun. I cannot own your genes…right?

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. 

To Copy or not to Copy?

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In Flash of Genius (See Review), a biographical film story of FORD’s 1953 war on infringement, in the adoption of the Intermittent Wiper (your car wiper), an american jury ruled in the favour of a retired Physics professor, because he swayed them with the argument that Shakespeare’s works despite picking from words common to the English language, were actually inherently private and inventive because he was the first to arrange them in the order in which we revel today. He argued, that he too needed to be compensated by FORD, for “stealing” his idea of the Wiper, despite writing down the constituent parts of the Wiper, and their functionality and handing these over to the FORD Motor Company.

In high school, the current Makerere University Chancellor was made a god of economics based on works that he placed in pamphlets and these went about as near gospel truth in the study and revision for Economics, both at Advanced Level, as well as for some First Year Economics Courses. Whereas Dr. Sentamu has a right to these works as derivative works, and as such deserves, and reserves the right to the Intellectual Property therein, the actual knowledge contained in these books cannot be wholly attributed to him. Alas, Dr, Sentamu cannot claim to be the originator of this knowledge. Or can he?

In Ugandan Universities, a large amount of student pocket money is spent on photocopying lecture notes. Many an office printer in the average work place does some photocopying for one or 2 students, at least once a week. Frankly, one could say the University, as we know it, could not exist without photocopying as we know it. But have you ever actually wondered what it would be like to study without Photocopying?

You see, in the 16th Century, the battle lines around copying were drawn – and 3000 people died. So lets not take it lightly at all. Read the amazing Story Here

In the eyes of every author, it is their solemn hope that they will retain moral rights to the content in their written works, BUT also, that they will acquire economic rights when we buy the book. So When we copy the book, not only do we infringe on their rights – as we often don’t ask for permission, we also directly affect their income, because we then wont go out to buy an original copy of the book. YET, when the author rights that book, he cannot then stand in the way of our right to enjoy the access to the information contained therein. In fact, one can argue that if he didn’t want us to know about it, he might not have written the book in the first place.

Ugandan Copyright & Neighboring Rights Act of 2006, awards copyright to such an author, for the rest of their lifetime (or the lifetime of the last surviving co-author) plus 50 years. As it stands, even the works of Okot B’itek are not yet public domain works. So every copy you have made has in fact been illegal, and you should be in jail, fined, or both! Thankfully, that’s the Penal Code.

So when can you copy, and do so rightly? You need permission from the author. Simple as eating matooke. Yes, even when the author took their works from Shakespeare’s the law protects them as Derivative works, so you still need permission. Alternatively, the author could make copying of their works allowed. So we should in fact consider the moral obligation to CEASE, immediately, ANY and ALL unauthorized copying of literary works.

I could end here, but then you will ask what about the inherent right to knowledge – and the fact that access to that knowledge should be an implied right. And some would argue at this stage, that if the Right to Education is a gazetted Human Right, then the right to access to Educational Materials is implied. Well, does that take away the Intellectual Right that the author had on this content? Certainly not. So how do we cater for both sides?

At the CEHURD Media Training on Intellectual Property Rights, I am learning how to navigate the vast legal ocean to be able to answer this question in a way that would satisfy both parties. But if the world’s Least Developing Countries do not succeed in getting an extension to the TRIPS Agreement (part of the laws under the World Trade Organization, for which Uganda is a member), then in fact this law will come into play, and very soon, as soon as 1st July 2013, it could be completely illegal to photocopy!

 

Web Resources:

TRIPS Agreement – http://www.wto.org/english/tratop_e/trips_e/t_agm1_e.htm

CEHURD – http://www.cehurd.org/

FOSSFA – http://www.fossfa.net

 

 

Intellectual Property, at the CEHURD Media Training

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Intellectual Property is an evolving subject, locally and internationally. 2013 has seen some interesting  Moses Mulumba the Director of CEHURD, (website) passionately introduces various aspects of Intellectual Property in Uganda, and the path that this has taken since the first Media Training Fellowsip in 2012. CEHURD aims to mentor and support jounalists, from main stream media as well as online reporters (and bloggers), in how they can report on links between social welfare aspects and Intellectual Property.

Over 2 days, 15 Ugandan jounalists will be holed up at the shores of Lake Victoria in a packed 2 day training.

Richard Hasunira, a  local communications consultant started the day off with some ideas on the role of Media in reporting Intellectual Property. Richard stresses how Intellectual Property Rights should not stifle in any way, all Human Rights, and specifically, access to Medicines, Access to Educational Materials as well as Access to farming developments that enhance food security. Richard challenged the participants on their cardinal functions – to inform, to educate, and to entertain – to grow these into the moral obligation to promote Human Rights. And to make sure they report on restrictions that block access to new knowledge, or new innovations.

#CEHURDIPTraining – 16thCentury Battle between Columbo and Finnian – http://ow.ly/jXiwN and an interesting Movie – http://ow.ly/jXizc