Debate on Patenting the Human Genome & My Father

Yesterday, in Kos' post about "1/5 of the human genome is pantented" and the following uproar, I was both amused and upset.  Why?  Well, my father wrote those patents.  So, although I don't have a Ph.D. like he does, or a law degree, (like he also does) I do have years of dinner time conversations, and less of a hatred for "big pharma" than I should have, being the card carrying liberal I am.  

More on the flip side.....

First, a little background before you jump all over me and my dad.  My grandparents escaped Nazi Austria and fled to Buenos Aires.  At the ages of 45 and 47, they had my father, their only child.  Then, when he was 13, his Mom died, and at 16, his Father.  Unfortunately, the rest of his family did not make it out of Europe, except for one Uncle in New York.  My father sold all of his posessions, and arrived in the U.S. carrying two suitcases... one of clothes, one of chemistry books.  He enrolled at Ransellear Polytech in upstate New York, and then became the first RPI graduate to go to Harvard for his Ph.D. in BioChemistry.  He completed a post-doc at MIT, and then decided to become a patent lawyer in what was then (1982) the developing field of biotechnical patent law.  He is the American Dream.  

So, what does this have to do with patents?  The truth is, your genome isn't patented any more than your hair is.  However, in developing shampoos, hairspray, and rogaine, the specific components in each of those products needed to be patented for use on hair so that the market isn't filled with shoddy imitations and half developed products. Hence, particular tests on hair needed to be patented. Getting a patent is not an easy task.  The science must be complete and of the highest level.  For genomes, what is patented are the tests that use a specific genomic combination in order to test for diseases, like Cancer, Altzheimers and Parkinson's.  Your and my genomes are not patented.  However, if we want advances and cures in these diseases, scientists need to patent these gene sequences.  Why?  Because, in the end, (and the scientists HATE this fact) big pharma (even the generics, who fight the big pharma patents many times in order to provide cheaper alternatives) is run by businessmen, not scientists.  And science takes money.  Especially good science.  So, no worries, no one is coming for your genes.  But some day, they may be able to test them for Parkinson's and start you on treatment way earlier than you would ever show symptoms.  Because of human genome patenting today.  

On a side note: One of my Dad's "side" projects, which will become his main project when he retires in a few years, is going to Latin America and, pro bono, defending native tribes whose land and knowledge has been co-opted by drug companies, making sure they recieve payment for the plants which have been taken from their land and credit for "discovering" a new cure for headaches, or what have you.  Yeah, I'm pretty proud of him.  

•  recommended, but

   what does it cost us? and what does it mean that these treatments involving our most essential components are commoditized and have price tags and licensing fees?

  There's a short story from Mieville about Xmas that kinda describes what i fear, except it'll be worse.

  by amberglow on Tue Oct 25, 2005 at 06:39:01 AM PDT

  •  The treatments....

    are NOT made into commodities.  They are made into patented treatments for many years before they become a commodity.  And in the free enterprise system we operate in, someone pays for the drugs and tests developed- insurance or you personally.  I think many on this site muddle the need for universal health care with the cost of new drugs and process of developing new drugs.  

    I support universal health care.  I also support development of new, safe treatments and diagnostic tests.  With human genetics, I also support the need to not penalize people who got dealt a less than optimal gene form in the genetic shuffle- we all have less than optimal genes if you look hard enough.  I support development of stem cell research for biological treatments, and those stem cell creation methods are all being patented too.

    I am curious what alternative system you would propose to develop new tests and treatments.

    by murrayewv on Tue Oct 25, 2005 at 06:58:13 AM PDT

  •  The problem is.....

    that the supplies, researchers, lab time, and everything else costs money to manufacture, research, and run.  Without the patents, there would be no way to fund any of it for those who really do have the knowledge necessary.  I agree that the system, especially when it comes to the general public's need for medication and information, needs to be fixed, but I am not sure how to change the fact that a lab is expensive to run and scientists with 3 degrees should be paid well.  

    by ThaliaR on Tue Oct 25, 2005 at 07:00:53 AM PDT

    •  I am wondering

      if a larger share couldn't be borne by our universities? I guess that it already is, but the labs at schools often sell their info and research for small amounts, then the Pharmas go on to make large profits. If more of the profits stayed at research centers (public facilities) and the profits paid for good salaries and lower tuitions, wouldn't we all win? Or am I missing a piece of this and being naive?

      by parryander on Tue Oct 25, 2005 at 07:07:58 AM PDT

      •  As a graduate student

        at a research university, the problem is, simply, money.  In order to not be biased for or against any one treatment, university scientists are loath to take anything but public (NIH, NSF) money.  The problem?  There simply isn't enough NIH and NSF (National Science Foundation) monies to go around.  When universities start taking money from companies, the problem is their results come under question, becuase the companies don't want "bad" results which may go against their treatments.  And if there is no other type of result, the company may pull their funding.  What we need are higher funding levels from government agencies.  Which brings up a whole list of other questions, of course.

        by ThaliaR on Tue Oct 25, 2005 at 07:13:54 AM PDT

      •  Private universities....

        have big foundations and DO support much research.  Some, like Stanford, materially benefitted from commercializing research (like Genentech and patents on recombinant DNA.)

        Public universities are squeezed- lower wages, more teaching hours, must write big grants for funds for research, and then your ideas belong to the university unless you start a company and license them back,  This stuff takes serious money- a stem cell project could cost tens of millions for equipment, trained folks, and supplies.  

        by murrayewv on Tue Oct 25, 2005 at 09:01:54 AM PDT

•  he sounds like a great guy,

   but there's many things wrong with the system in which he operates.

  by amberglow on Tue Oct 25, 2005 at 06:40:05 AM PDT

•  Thanks for this insight...

  and the clear discussion of these issues.  This site frequently alternates between a pro-science educaton emphasis- evolution, global warming, alternative energy and stem cells are good topics for research- pharmaceutical companies and patenting genes are somehow morally questionable.  The reality is more nuanced and complex.  Most scientists are strong advocates for good health care systems and scientific data-based decision making.    

  by murrayewv on Tue Oct 25, 2005 at 07:02:24 AM PDT

  •  Thank you

    I really do believe that people's hearts are in the right places, and most of the time, their heads, but I also think there is a confusion between who runs the drug companies and who works for them.  Scientists, for the most part, simply want to make discoveries and breakthroughs.  Most businessmen at the pharma companies are not scientists, they are, well, businessmen.  

    by ThaliaR on Tue Oct 25, 2005 at 07:10:08 AM PDT

•  Recommended

  Thanks for the insightful diary. Gave me a perspective that I didn't know.

  by Marcus Junius Brutus on Tue Oct 25, 2005 at 07:05:54 AM PDT

•  Read this book, then come back to this thread

  Since you're still more a friend to Big Pharma than you want to be, I suggest you read "The Truth About the Drug Companies" by Marcia Angell, MD, editor of the New England Journal of Medicine for more than 20 years.

  Here's a link to a review on the book.

  http://www.bcaction.org/Pages/SearchablePages/2005Newsletters/Newsletter086E.html

  But yes, your Dad sounds like a fascinating figure.  I can see why you're so proud.

  by jakbeau on Tue Oct 25, 2005 at 07:54:52 AM PDT

  •  I will look into it....

    thanks for the link.

    by ThaliaR on Tue Oct 25, 2005 at 08:06:51 AM PDT

  •  This book sounds interesting...

    with good credentials for the authors.  I will get a copy to read.  They are suggesting what to do about the problem in this book, which is one of my biggest complaints about the issue- lots of railing against the darkness and not enough candle-lighting for change.

    by murrayewv on Tue Oct 25, 2005 at 08:52:53 AM PDT

•  Research reform.

  I see the problem as a fantastic way for progressives & liberals to show clearly to the public why the corporations are in control.

  The ratio for drugs/treatments created that actually reach stage III clinical trials, let alone public release, is very, very small. The profits from the successes fund the failures. From the failures come the successes, as it is virtually deemed so by the scientific method.

  Countries whose government collectively bargains for their citizenry has the power of buying in bulk - a pharma Costco if you would. The government gets a better deal, obviously, than a single consumer would. Also, when buying in bulk on a centralized purchasing point, the company has an idea how much of their product they anticipate to sell, and how much of the research costs are covered. When you're selling to people one at a time, it's harder to get an overall projection of sales that would cover the costs.

  Now if the government better funded university research, when breakthroughs are made, our country would end up saving more money while improving our populace. Not only would a majority of the cost of research not be passed on to the consumer, but good old US researchers would learn & grow.

  Yesterday I was working on-site with a large pharma research company. I was told that just a couple years ago, they had 500 salespeople nationwide. Last year, they brought on 900 new salespeople, and are currently recruiting in the south another 250 salespeople. This is only one of the half-dozen top biotech/pharma companies I work with, and they've all had a similar trend in the past year or two.

  I'd rather hear more hiring of researchers & academics than salespeople & legalized drug dealers. And if I've messed up a detail or two, please let me know.

  by zeitshabba on Tue Oct 25, 2005 at 08:04:16 AM PDT

  •  I completely agree

    with this idea.  Plus, giving more government money to university researchers decreases the bias inherent in company funded research.  One of the problems is that those who do the research understand the subtle methodological differences, but those who fund it, many times, do not.  There is such a push for publishable and usable results, the scientific method of 100 failures for 1 sucess is forgotten.  Anti-science government is so scary.  

    by ThaliaR on Tue Oct 25, 2005 at 08:10:30 AM PDT

    •  Dangnabit, I forgot my ranting lib'ral conclusion.

      Anti-science government is so scary.  

      
      Which is where I was heading with my relatively novice opinion, but forgot to bring it home.

      Our anti-intellectual government is going to obviously trend anti-science. What should be research funding is now being passed through "faith-based initiatives", also known as bribes to their radical fringe base. No money for science, then you don't have so many scientists asking questions about your energy policy or environmental record. The new valid scientific investment is teaching scientists how to write movie scripts to make science more appealing to the younger generation. Strangely enough, many children often find science fun & exciting when exposed to it. But they don't want smart, inquiring children.

      Then you tie in outsourcing... not call-center outsourcing, but science outsourcing. Gone are the days of the Dow chemists leading the field. How do you say Dow in Korean to your clone again?

      by zeitshabba on Tue Oct 25, 2005 at 08:32:30 AM PDT

  •  REAL prescription drug reform

    This would also be a great way to open a national health care discussion.

    Think about the new drugs that you've heard about in the last few years:  Viagra.  Cialis.  Propecia.  Even Vioxx and the like.  These are not drugs that treat massive public health crises.  Meanwhile, we live in fear of avian flu, and Tamiflu is in limited supply, even if it does turn out to work in a pandemic.

    New vaccines and new antibiotics aren't given commercials on prime-time TV.  But they are the most important drugs being created.

    Don't get me wrong - I'm very, very happy that there are new drugs for my allergies that let me pet my girlfriend's cats without sneezing on them.  They don't like it when I do that.  And I'm even happier that Claritin came out from under patent.  But allergies aren't a potential public health crisis, and my big fear in this arena is that public health isn't being addressed, while profits quite clearly are.

    So:  we tie this in to the need for national health care.  It's another element of the system:  not only do we have everyone under the protective umbrella of a national insurance system that takes care of them when they get the flu or slip on the ice and break their leg, but we also have a part of that system that is testing out new pharmaceuticals for the real public health crises, things like bird flu and antibiotic-resistant TB.  In fact, with everyone in the system, end-stage trial drugs can actually begin to be put into use at certain teaching hospitals, allowing for a larger, more representative sample population.  Everybody wins except giant corporations; and let's all say it together now, corporations are not people.

    O it is excellent to have a giant's strength:  but it is tyrannous to use it like a giant.  --Measure for Measure, II.2

    by RogueStage on Tue Oct 25, 2005 at 08:36:31 AM PDT

    •  Bingo!

      Exactly - there are so many loose threads that people often forget how they are all tied together somewhere.

      Instead of freaking out over corporations having patents on 20% of the human genome, it should be better asked how we got to a point where corporations are better able to provide for the public health, once grossly overpaid.

      Penis-pumping pills? Many types to choose from, just pick the name you find most "arousing"!

      Toenail fungus? We got pills that'll cure you right up! Sure, you might have hot flashes, the squirty bottoms, itching, sleeplessness, and more, but at least that unsightly fungus is gone!

      Cancer? Um, sure, we're working on it. But people don't choose to take cancer drugs, unlike the droopy man-junk pills, or the follically-challenged pills. If they need them, then we cannot charge ridiculous prices. But if they simply want them, cha-ching baby!

      by zeitshabba on Tue Oct 25, 2005 at 08:56:06 AM PDT

•  Recommended

  I would love to see big pharmaceutical companies run by scientists who are more concerned with getting out new and better treatments for diseases than with market share, profits, and the latest and greatest treatments for erectile dysfunction and hair loss.

  I would also love to see big pharmaceutical companies banned from medical school campuses - right now, new doctors are bombarded with advertisements for the newest (and most expensive) drugs, regardless of whether or not they are the most effective treatment available.  In fact, most of the time we don't know whether these drugs are the most effective treatment available, because pharma companies won't do side-by-side comparison studies for fear that their drugs will come up lacking.

  I'd like to see the FDA start up those side-by-side comparison studies - that would be a huge help.  Maybe then we could find out whether Celebrex is really more effective than plain old aspirin.

  And while I'm at it, I'd like a pony.

  by RogueStage on Tue Oct 25, 2005 at 08:24:20 AM PDT