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Interestingly enough the first patents on this came from the University of Utah, Myriad is a licensee. That a public university receiving federal funding to support this research with a mandate to further scientific knowledge for the public benefit would pursue patents on such a fundamental discovery is itself a separate series of issues. Groups like Universities Allied for Essential Medicine have been fighting from the academic side to ensure that Universities license technology responsibly and include terms in the license to guarantee that companies make the commercialized products as widely available as possible. This includes license terms like exemptions for non-profit and government institutions using the claimed technology for research- a right you would expect Universities to fight tooth and nail to preserve but sadly they often don't out of fear of turning off potential licensees. This is particularly true in a recession when every royalty dollar makes a huge impact.

More often than not it ends up in the hands of for-profit drug companies one way or another. Even the money that goes to fund research in academic labs eventually is used to patent the drug compounds by the university and an exclusive license is granted to a pharma company with few or no strings attached about ensuring that the drug is brought to market in a way that actually ensures access to patients. It's kind of a sick process when you think about it since the incentives for all parties involved (scientists, universities, pharma) are stacked to encourage them to charge or be ok with charging ridiculous margins on the drug compound to turn record-breaking profits rather than shooting for a responsible profit margin while ensuring maximal possible patient access. This is done with both public and private financing and is an unintended consequence of the Bayh-Dole act which was meant to ease the commercialization process for technologies coming out of publicly funded research. Groups like Universities Allied for Essential Medicines have been trying to fight this in a grassroots manner by advocating that universities adopt responsible licensing policies where they can include pricing and accessibility targets for which non-compliance can result in revocation of license exclusivity (just one example of what UAEM fights for).

Disclaimer: I am not directly affiliated with UAEM, but have several friends who are.

Almost 30 extremely prominent scientists and physicians, including 4 Nobel Laureates and probably the most famous HIV scientist on the planet, suggest that people doing the research are well-represented. See http://www.essentialmedicine.org/cs/?page_id=4#Sci ence for details. Taxpayers (the ones paying for so much of university research) are invited to sign the Philadelphia Consensus Statement.

Is it just me or does it seem like this article has brought out a high percentage of astroturfers. Reading highly modded comments like "Universities don't make drugs, dummy! They just license them to drug companies at which point it's completely out of their hands." and "If you don't pay market price for your life-saving drugs then no one will do research and the terrorists win!" I hope these are astroturfers, anyways.

First, at least, read the opening of the Consensus Statement.

Oh no! Someone's suggested charging poor people a price they can afford for the drugs they need to survive the multitude of plagues that they suffer through! And they've also suggested universities research "less profitable" diseases! This is a horrible idea. Because... um... free market... invisible hand... survival of the fittest... blah blah blah.

If you're sick and dying, you can't work, you can't support your family, you can't even protest the fact that you're sick and dying. Now, in many of these cases, either A) no rich people have your disease and so no big university/company has funded enough research to find a treatment or B) not enough rich people have had your disease for long enough so the treatment created by a big university/company is still protected under international patent law and so costs more money than you could ever make.

The idea that research (most of which is heavily subsidized) should be directed toward doing the most good and not making the most money should not be so quickly ridiculed. Those of you posting that Universities will no longer do research if they can't make money off it need to ask yourselves what is the difference between a research university and a pharmaceutical company?

And, at this point, whether they're universities or drug companies, the people doing medical research aren't hurting for money. But profit maximization means that people who cannot pay (because they are dieing) do not get treated.

Im picking on you here, but there are others whose responses are equally off-target.

Read the Consensus Statement again. Closely.

Then start to realise that the purpose of this Consensus statement isnt to jack your profits or make your hard work all for nought or any of that rubbish you seem to be touting.

Imagine this:

A company has obtained the rights to produce and distribute a particular drug from a university. They are intending to distribute it to America and maybe England or Australia and maybe even parts of Europe. Its a new drug that costs maybe 200 bucks a course of pills. The pharmacy(drug store) might get 50 bucks out of that 200, the pharmaceutical company gets 150, of which alot has been spent on manufacturing and transport. They also pay royalites to the University. Leaving them with enough money to profit, finance some r&d of their own and so on.

They dont send this drug to the developing countries, its too expensive for the comapny to even consider, especially when you take into account the transport costs, and the low chance of anyone even being able to afford the damn things.

So there is an unequitable distribution of the drugs, the company has no intentions of distributing to the poorer countries, and the countries cant afford it.

The consensus doesnt want to mess with the profit of the areas above, it is suggesting that local pharmaceutical companies in poor countries be licensed to create the drug on a no-royalty basis, for distribution only within the country considered to be 'poor'

Its not the horrible profit eater you describe.

You also mention the black market, and you are correct in stating that the drug company in the developing country might try and sell the drug for cheap, you will get more spam offering 'cheap folagron' or whatever, but no actual harm is being done to anyone's profits. Its nigh on impossible to ship drugs into coutnries without some form of question being asked, and 5 bucks a pop isnt exactly profit central for drug smugglers, they are better off risking their lives (death sentence for drug smuggling in many 3rd world countries) for a more profitable and less legal drug.

"Sending them cheap drugs puts more strain on existing resources ... new miracle drugs is greatly reduced."

See now this is a legitimate point. They need the education more than they need the drugs, but sadly they arent really ready for the education we can give them. Many attempts to educate 3rd world communities end up causing the educated to leave the communities, leaving behind the elders stuck in the old ways. Its sad, and its not working well, but that doesnt mean we shouldnt be trying.

Ultimately we need a better plan for 3rd world health, this is certainly an improvement over the existing situation, and does need to be considered.

I have skimmed over the NEGLECTED DISEASES and MEASURE RESEARCH SUCCESS ACCORDING TO IMPACT ON HUMAN WELFARE sections of the consensus, as have pretty much all the other posts when I started writing this. They are important because they represent a drive to reward research into diseases that affect third world countires more than the US, meaning that research into diseases caused by unpotable water, badly cooked food or exposure can be undertaken. It also calls for a re-alignment of the metrics of Research Success, stating that net benefit to the human race should be our main metric, not patents and royalties. Both of these are noble goals that will aid thrid world countries as much if not more than cheap drugs.