july05b.indd


scholarly communication 
Sharon Terry 

In the public interest 
Open access 

My children have a genetic disease. It is rare, not well understood, and there is 
no treatment or cure. However, the most dis­
turbing obstacle we face is the wall around 
published scientific research. Information 
critical to health and biomedical research 
is held hostage by questionable and arcane 
publishing practices. It is time for publishers, 
both private and academic, to redesign their 
business models in response to a new age 
of information sharing and a stronger sense 
of the scientifi c commons. 

In 1994, my two children were diagnosed 
with pseudoxanthoma elasticum (PXE), a 
disease that disfigures their skin, may rob 
them of their sight, and could cause gas­
trointestinal and cardiovascular diffi culties. 
While important to my family, these details 
are hardly significant given the greater ob­
stacles we face. In this age of accelerated 
discovery and robust raw materials—the 
complete sequence of the human genome, 
for example—it will be possible to treat and 
cure diseases, but only if the raw materials 
are available to the right partners—research­
ers, clinicians, and patients. 

A crash course in access to medical 
literature 
Information is a powerful raw material, 
but the work of improving health through 
biomedical research is made more diffi cult 
because of current barriers to informa­
tion. These barriers shocked my husband 
and me as we began to make sense out 
of our children’s disease. In response to 
their diagnosis, we began to research their 
condition. 

Coming into the medical research world 
from nonscientific occupations, we set out 
in search of meaningful and new informa­
tion. After discovering that bookstores did 
not have the information we needed, we 
turned to medical school libraries and began 
to access medical journal articles. We learned 
that research on PXE was a cottage industry, 
and, if we were to improve our children’s 
futures, we would have to catalyze research. 
Our first step was to understand what we 
were reading. We bought textbooks and 
dictionaries and taught ourselves this new 
language word by word. 

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 ac­
cess information in a more cost­effective and 
reasonable manner. 

Sharon Terry is president and CEO of the Genetic 
Alliance and the founding executive director of 
P X E  I n te r n a t i o n a l,  a n  a d vo c a c y  gro u p  fo r  t h e  
genetic condition pseudoxanthoma elasticum 
( P X E ) ,  e - m a i l :  s t e r r y @ g e n e t i c a l l i a n c e . o r g  

© 2005 Sharon Terry 

C&RL News July/August 2005  522 

mailto:sterry@geneticalliance.org


Although the United States wisely invests 
billions of dollars in biomedical research 
through the National Institutes of Health 
(NIH), we discovered that the results are 
locked up in very costly annual journal 
subscriptions and institutional licenses that 
can cost thousands of dollars for a single 
journal, or made scarce by use­limiting, per­
article charges that can run as much as $30 
to read a single study. Therefore, we had no 
problem with devising schemes to hack into 
the early databases—Internet Grateful Med 
and university­based text based systems—in 
order to get the information we believed 
belongs to the public. 

Founding a research organization 
As a result of our research, we founded a 
nonprofit organization to advance research 
on PXE—one that would initiate and fund 
research and provide information to newly 
diagnosed individuals. Our need to read 
medical literature grew as our foundation 
grew—we were the sole source of accurate 
information for more than 3,000 people, 
and we coordinated 19 laboratories. We 
were co­discovers of the gene, the fi rst lay 
co­inventors of a gene patent, and are now 
the creators of a genetic test for PXE. I also 
now lead the Genetic Alliance, a coalition 
of 600 disease­specific and community or­
ganizations seeking better healthcare and 
treatments. 

Today, ten years after our children’s 
diagnosis, I can use a wonderful, freely ac­
cessible 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 fi eld 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. They 
exist on the Internet, but they are behind 
firewalls built by journal publishers that re­
quire money to release their treasure. Each 
one requires $25, $30, or $40! Therefore, I 
am still forced to do end­runs 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. 

Who really owns NIH research? 
If families are effectively barred from having 
access to these articles, what of the effect 
on researchers and clinicians with limited 
budgets striving to make new discoveries? 
Or on educators sharpening the skills of the 
next generation of medical practitioners? We 
learned that these fees were a burden to 
libraries, and that only the largest schools 
could afford the full complement of journals. 
We also learned that other clinicians—social 
workers, physical and occupational thera­
pists, genetic counselors—don’t usually have 
access either. Our experience forces us to 
ask the hard question: Who really owns the 
NIH biomedical research we fund with our 
tax dollars? 

We are aware that too often scientists and 
medical journal publishers dismiss a parent’s 
ability to read a scientific article or even to 
imagine they might share one with their 
medical specialist. 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. We 
know firsthand that many families struggling 
with the added cost of medical specialists are 
forced to spend hundreds of dollars more 
each year to purchase published studies that 
chart the legitimate scientific progress about 
their loved one’s disease. In some cases, this 
is the only credible information available. 
How can we justify such a high price tag on 
this life­sustaining public knowledge? First 
we pay to fund the research, and then pay 
again to read the outcomes. 

A few hundred years ago, before move­
able type, cloistered monks created rare 
and beautifully illuminated manuscripts 
containing divine word, unavailable to the 
illiterate masses. Distribution of this infor­

July/August 2005  523 C&RL News 



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 
suff ering. 

mation was almost impossible, and these 
monasteries became the guardians of sacred 
texts. Generations later, with our newfound 
ability to digitize and archive information 
on the Internet, shouldn’t we abandon our 
self­imposed monasteries and use existing 
distribution mechanisms to accelerate the 
spread of peer­reviewed medical science? My 
family knows this is critical to their health 
and so do the millions more who partici­
pate in clinical trials, who pursue scientifi c 
inquiry, or whose lives are uncertain until a 
treatment breakthrough is developed. 

In addition to advocating for genetic 
diseases, I now also advocate for access. 
For me, it is all part of a continuum. Access 
to information leads to novel discoveries, 
collaborations, and discoveries that offer 
us solutions. Genetic Alliance joined the 
Alliance for Taxpayer Access, a diverse and 
growing alliance of organizations, founded 
by librarians, that represents taxpayers, 
patients, physicians, researchers, and insti­
tutions that support open public access to 
taxpayer­funded research. 

Unlock the science! 
New notions of cooperation, collaboration, 
transparency, and access are now challeng­
ing the status quo. It is now time to unlock 
this science and make it more accessible to 
all of us. Fortunately, change is in the works. 
NIH Director Elias Zerhouni confi rmed some 
months ago that the “status quo is unac­
ceptable.” In fact, under his direction and 
endorsed by the U.S. House of Representa­
tives, NIH has implemented a cost­effective 
and balanced policy that, for the fi rst time, 

will make virtually all NIH­funded research 
free and accessible online to all Americans 
through the NLM. 

NIH recommends that authors deposit 
their articles in PubMed Central, a reposi­
tory managed by the NLM, anytime up to 
12 months after publication. NIH itself will 
benefit by maintaining an archive of the 
articles resulting from the research it funds 
with public dollars. 

It remains to be seen whether this sys­
tem, which puts the onus on scientists, will 
work. Zerhouni has established an NIH 
Public Access Working Group of the NLM. 
I have accepted an invitation to serve on 
this committee and I hope we analyze the 
effects of the current policy. I see this policy 
as a first step. Ultimately we would like all 
government agencies to require that pub­
lished papers resulting from publicly funded 
research be deposited in PubMed Central, 
or similar repositories, with no embargo. I 
recommend that these articles be the fi nal 
edited versions, with links to the journals on 
the publishers’ sites. A number of publishers, 
particularly academic societies, have suc­
ceeded in releasing papers with no embargo; 
they have not lost revenue, and realize that 
journals will continue to make money in 
subscriptions, provided they engage in the 
value­added practices that are so success­
ful—providing information ancillary to the 
published articles that enrich the reader’s 
understanding of the field and support the 
community of researchers. 

Further issues: PubChem 
I also hope that the NIH Public Access 
Working Group will consider the issues sur­
rounding PubChem. PubChem is the latest 
member of the powerful family of integrated 
databases operated by NLM. PubChem con­
nects chemical information with biomedical 
research and clinical information in a “con­
nect­the­dots” fashion and is a critical part 
of the NIH Molecular Libraries initiative. The 
integration of these databases makes the 
whole much greater than the sum of its parts. 
It is a free, publicly available database that 

C&RL News July/August 2005  524 



provides information about potential starting 
points for the development of new drugs. 

The American Chemical Society (ACS) is 
challenging its existence, even though there 
is very little overlap with the ACS’s data­
bases: PubChem focuses on the biomedical 
applications of small molecules, while ACS’s 
databases focus on the chemical and patent 
literature. Although some of these academic 
societies claim to be more purely motivated 
than the commercial publishers, it is ap­
parent to me that they too are motivated 
primarily by business interests. Disclosure 
is critical here, and cloaking the desire for 
increased profits with an academic mantle is 
troubling. PubChem should be celebrated as 
an exemplar of connected information pro­
viding a premise for accelerating research, 
not challenged by the business arm of a sci­
entific society. There appears to be a confl ict 
of interest here, and I look forward to the 
ACS member who will sit on the working 
group commenting on this. 

Public access to literature is critical. It is 
the bedrock of our system and the catalyst 
for science to build on science. Scholars and 
educators will find riches of new data and 
studies to use in classrooms; researchers 
across disciplines will have new opportuni­
ties for collaboration as they scan this trea­
sure of publicly funded knowledge; and the 
work of all authors will be used and cited 
more frequently, enhancing their reputation 
and contribution to their fi eld. 

For the rest of us, living on the promise 
and inestimable value of publicly funded sci­
ence, we will have access to the information 
we need to educate our doctors and to help 
the research community make connections 
as the basis for translating basic research 
into treatment and cures. We have no time 
to lose: we need public access to govern­
ment­funded science now. 

Keep up-to-date on scholarly 
communication issues 

ACRL’s Scholarly Communication Web 
page is home to a range of resources that 
will keep you informed about the latest 
issues in the scholarly communication 
arena and the work ACRL is doing to help 
reshape the system. Visit the site to fi nd: 

• Information on ACRL’s Scholarly 
Communication Initiative 

• ACRL’s Scholarly Communication 
Toolkit, with valuable information for li­
brarians, faculty, academic administrators, 
and other campus stakeholders 

• ACRL documents, such as the Schol­
arly Communication Research Agenda 
and “Open Access and the ACRL Serial 
Publishing Program” (white paper) 

• Links to articles from the C&RL News 
scholarly communication column 

Access this and other strategic in­
formation at www.ala.org/ala/acrl 
/acrlissues/scholarlycomm. 

July/August 2005  525 C&RL News 

www.ala.org/ala/acrl