SHARING FEDERALLY FUNDED RESEARCH DATA

Having +Kathy Giusti on Morning Joe (MSNBC) was a pleasant surprise. Other than what she said on the show, I know nothing about this woman. As it turns out, information gained from Wikipedia reveals she is the founder and chief executive officer of the Multiple Myeloma Research Foundation and Multiple Myeloma Consortium. What was so pleasing to me was her depth of understanding of the research environment.

Multiple myeloma is a type of blood cell cancer. A doctor diagnosed her as having it and fortunately, she has lived well beyond the life expectancy for people with that disease. Information sharing of both private and public sharing of information is at the heart of her foundation. She recognized that the lack of sharing research results is a major block to advancement in patient care.  As such, both scholars and practitioners of knowledge systems have this subject as their major research interest—the awkward syntax of research on research.   

It was important that the discussion took place on +Joe Scarborough’s show. Joe is a small government conservative so I expect he has a following of like-minded individuals.  What Ms. Giusti was questioning is who owns research information, which has been a subject of several posts on this blog site and a book I have written. If a company hires a research scientist and that scientist discovers a cure for multiple myeloma, that information belongs to that company. If taxpayers fund a research project in a state funded university and the results of that research are a cure for Multiple Myeloma, again the question of who owns the information should be clear; it belongs to the state taxpayers. When things get complicated is when a company funds a college professor paid by tax dollars to do research and that research finds the cure. Even more complications set in when the company obtains a government grant and uses the money to fund a college professor paid by states tax dollars to do “their” research.

The thing to know about university research is that when private companies fund research projects in that university they pay what is called “overhead”, they pay a percentage of the entire grant to the general fund of that university; sometimes the percentage approaches 50%, which means for a million dollar grant, the university gathers in $500,000. The administrators can spend the money as they please without justifying them to the State.

So who owns the research data and why is owner ship so important?  Money! The company who owns the information can patent it to protect their investment and then sell the resulting drug or technique to the people for huge profits. It takes years to prove and patent a drug or medical devise. If the information is public, competition can capitalize on it. The result is that college professors,  whose reputations depend on their research results, not their teaching ability, cannot publish their own data if the owner of the research results say it is secret. The entire system is an anathema in an educational institution.

Bayh-Dole Act passed in 1980.  This law allowed research results (treated as intellectual property) from federally funded research to be “owned” by the researcher/institution/company. Prior to this law, the taxpayers owned the results. Many research projects are too expensive for private industry to fund, yet a clever individual can own and profit from the results.

The windmill Katy Giusti is jousting is this government-industry complex. In its simplest form, there is information out there that could help her and others like her with many different diseases; they cannot wait. Unfortunately, researchers will not reveal their data until after the government grants a patent or the FDA approves the drug but that is a necessary delay if we are to have a safe and reliable drug industry. The delay is a problem but not the real problem. The real problem goes much. Many if not most researchers have it in the back of their minds that they can get rich if only they can find a patentable product. They do not want to share what they have discovered so someone else will be the one to use the data and reap the rewards, so they do the logical thing, they do not publish their data. In my mind, this may be excusable in private industrial research paid for by company profits, which is paid for by stock holders, but not if the research was paid for with taxpayers dollars especially in state funded universities.  The promising “research” on research data sharing Kathy Giusti is dealing with is important and deserves everyone attention and support.  

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