The bile in medical research: refusing to share data

Eugen G Tarnow  July 20 2011 11:24:07 AM

It was just announced that the guidelines for an Alzheimer's diagnosis is no longer an autopsy by itself, since brains with and without AD can often look the same.  We are therefore back to the drawing board.  We do not know what causes the disease and we also do not know enough to classify it (and much of the research that used the old classification is presumably worthless).

Why is it that trillions of dollars (you check it - I did not) spent on medical research fails to impress?

To discover just how corrupt medical research is you would have to go underground as a medical researcher, keep your integrity intact, and then be able to remove yourself from a field that offers so much money and so many patients and relatives thinking you are God.

I am a neuroscience researcher coming out of physics.  I used to think physics was corrupt (people steal authorship credits all the time) but medicine is in another class (though not when it comes to stealing authorship - at least pathology is no worse than is physics - see http://coauthorship.com).

If you have caught onto how one day food X is bad for you and another day it is good for you, it is probably the same reason as we now have no idea how to diagnose Alzheimer's:  medical researchers refuse to share data.  They publish articles and then don't let anybody else look at the data.  

There are at least three reasons for refusing to share data.  
1.  The researchers themselves believe they can make a lot of money on the data (which they get from patients for free prodding them and cutting them up and are often paid by taxpayers to collect).
2.  They are afraid of competition.  Since medical research can be quite expensive to conduct, by withholding the data they have significantly upped the barriers to competition.
3.  But most importantly, they are afraid that somebody will discover that their published articles are wrong.  And in medicine, it may be that 99% of the research is wrong (you check it - I did not).  Those of us who followed the Schoen debacle in physics - in which a physics researcher was suggested for the Nobel Prize but somehow always failed to provide samples backing up his data - know that when data is not shared, it is likely the Emperor is nude.

One of the most prestigious journals, PNAS (I am not sure how to pronounce it but it is an abbreviation of Proceedings of the National Academy of Sciences) decided to pretend to do something about this state of affairs.  They added a "journal policy" that states:

Materials and Data Availability. To allow others to replicate and build on work published in PNAS, authors must make materials, data, and associated protocols available to readers. Authors must disclose upon submission of the manuscript any restrictions on the availability of materials or information. Data not shown and personal communications cannot be used to support claims in the work. Authors are encouraged to use SI to show all necessary data. Authors are encouraged to deposit as much of their data as possible in publicly accessible databases. Such deposition may facilitate access to data during the review process and post-publication.

Authors must make Unique Materials (e.g., cloned DNAs; antibodies; bacterial, animal, or plant cells; viruses; and algorithms and computer codes) promptly available on request by qualified researchers for their own use. Failure to comply will preclude future publication in the journal. It is reasonable for authors to charge a modest amount to cover the cost of preparing and shipping the requested material. Contact pnas@nas.edu if you have difficulty obtaining materials.

But just as other journals use "ethical guidelines" to make themselves look pretty but fail to enforce them, PNAS policy is that the data can be subject to a "transfer agreement".  In fact, the journal told me that "It is standard practice for authors to issue materials transfer agreements and PNAS does not adjudicate the terms of those agreements."

In other words, you have to share the data but you can make the sharing contingent of whatever contract you like. Below I attached a contract I was asked to sign when I wanted to see the data behind "Methods to improve the detection of mild cognitive impairment" by William R. Shankle, A. Kimball Romney, Junko Hara, Dennis Fortier, Malcolm B. Dick, James M. Chen,
Timothy Chan, and Xijiang Sun.  I put in my initial request for the data on May 2, 2011 upon which Mr. Shankle asked "Can you tell us what the purpose would be?"  I then had to explain about the PNAS journal policy on data sharing and after 7 weeks Dennis Fortier sent me the contract these authors needed in place for me to see the data below:

If you read this contract you will find that these researchers want to be my business partners for ever in case I come up with anything commercial from having looked at their data!

I also asked for the data behind "Hippocampal disconnection contributes to memory dysfunction in individuals at risk for Alzheimer’s disease" by  Travis R. Stoub, Leyla deToledo-Morrell, Glenn T. Stebbins, Sue Leurgans, David A. Bennett , and Raj C. Shah.  I received an answer from Ms. Toledo-Morrell: "It is not clear from this e-mail what exactly you need and what it will be used for. Could you please clarify?"  There we go again.  After six weeks she told me that should would only share derived scores, z-scores, not the underlying data.  PNAS opinion is not yet known but it really is immaterial - if PNAS allows for the use of contracts that they will not check, their journal policy has no teeth.

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