Re: The Value of OA

["Charles W. Bailey, Jr." <cwbailey@digital-scholarship.com>]

Regarding laypersons' use of medical information, here is a quote 
from my paper "Open Access and Libraries."

For example, Sharon Terry recounts her struggle to gain access to 
medical literature that might help her two children who suffer 
from pseudoxanthoma elasticum (PXE):

"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resorted to masking our outdated volunteer badge and following a 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.40"

Although she and her husband had to teach themselves medical 
terminology to even read needed literature and faced major 
barriers to accessing it, they went on to establish a nonprofit 
organization devoted to PXE, and they discovered a key gene 
related to the disease and created a test to detect it. 
Admittedly, few people would be able to duplicate this feat; 
however, one does not need to look far to encounter average 
citizens who, when faced with a major medical crisis, try to 
conduct research that will help them overcome it. . . .

40. Sharon Terry, "In the Public Interest: Open Access," College 
& Research Libraries News 66, no. 7 (2005): 522, 
http://www.ala.org/ala/acrl/acrlpubs/crlnews/backissues2005/julyaugust05/publicinterest.htm.

Best Regards,
Charles

Charles W. Bailey, Jr.

Digital Scholarship
http://www.digital-scholarship.org/