Sauropod Vertebra Picture of the Week

“In the public interest” is an article that was published in C&RL News back in July/August 2005. It’s Sharon Terry’s first-person account of being the parent of children with a pseudoxanthoma elasticum (PXE), a genetic disease. It recounts her and her husband’s attempts to find out about PXE, and eventually to contribute to the research on it.

Here are the lengths they were driven to early in the process:

We spent hours copying articles from bound journals. But fees gate the research libraries of private medical schools. These fees became too costly for us to manage, and we needed to gain access to the material without paying for entry into the library each time.

We learned that by volunteering at a hospital associated with a research library, we could enter the library for free. After several months of this, policies changed and we resorted to masking our outdated volunteer badge and following a legitimate student (who would distract the guard) into the library. When that became too risky we knew we would have to find a way to ac­cess information in a more cost ­effective and reasonable manner.

Did the arrival of PubMed change everything?

Today, ten years after our children’s diagnosis, I can use a wonderful, freely ac­cessible tool created by the National Library of Medicine (NLM), called PubMed. I can call up bibliographic information on the hundreds of papers relative to PXE in a few seconds. Further, I can narrow the field to just a dozen papers on which I have been an author. Then, as I click on each article, I am not able to access any of them.

And so things continue much as before:

I am still forced to do end­-runs around the system. I travel to libraries and photocopy. I hire students in large medical schools to go to the stacks and copy articles for me, I “borrow” the journal login information from colleagues.

Terry provides a prescient diagnosis of what enables this dysfunctional and exploitative system to continue — the acquiescence of researchers working under perverse incentives:

We see how the barriers to access to publicly funded science are part of a larger system that seems to place a higher value on prestigious publications, tenure, and continued public support than on ensuring the most rapid exchange of knowledge to ease human suffering

Towards the end comes this optimistic projection:

Fortunately, change is in the works. NIH Director Elias Zerhouni confirmed some months ago that the “status quo is unac­ceptable.” In fact, under his direction and endorsed by the U.S. House of Representa­tives, NIH has implemented a cost­-effective and balanced policy that, for the first time, will make virtually all NIH­-funded research free and accessible online to all Americans through the NLM.

Here we are, nine years later. PubMed Central proudly proclaims “3 MILLION Articles are archived in PMC” on its front page, which is great. Yet only in 2012 did its compliance rate reach 75% (having been at only 49% as recently as 2008). Which means that a quarter of NIH-funded research is still not available to the world.

There’s no need for me to add much commentary to this. Please go and read the original article to get the full sense of what its like for such parents. And check out the Who Needs Access? site for other (shorter) stories of non-academics who desperately need access to research.