The Next Big Library Legislative Issue: Taxpayers Are Storming the Fee-Based Barricades That Keep Them from Federally Funded Research

By English, Ray; Raphael, Molly | American Libraries, September 2006 | Go to article overview

The Next Big Library Legislative Issue: Taxpayers Are Storming the Fee-Based Barricades That Keep Them from Federally Funded Research


English, Ray, Raphael, Molly, American Libraries


Sharon Terry is a highly visible advocate for the emerging issue of online public access to federally funded research. Her advocacy stems from painful personal experience. As a young mother, she learned that her two children had a rare and incurable genetic disease (pseudoxanthoma elasticum or PXE) that can disfigure skin, cause blindness, and result in other serious health issues. She and her husband Pat wanted to learn everything they could about their children's illness, and they set out on a determined path to educate themselves.

[ILLUSTRATION OMITTED]

They were soon shocked at the financial and access barriers they faced in gaining access to research literature. Since they were not affiliated with a university or medical school, they couldn't use licensed electronic journals. If they went directly to publishers' websites, the Terrys would amass fees ranging from $25 to $40 per article.

Sharon Terry, however, is an exceptional person. She and Pat devised ways around those fee-based barriers that included volunteering at a hospital library to get online access to its journal subscriptions and "borrowing" passwords from university students. Although they were of modest means and had no scientific background, they became experts on PXE and founded a nonprofit organization to advance research on the disease. Working with a network of scientists they became codiscoverers of the gene responsible for PXE, the first lay coinventors of a gene patent, and the creators of a genetic test for the disease.

Since 2002, Terry has been president of the Genetic Alliance, a coalition of 600 disease-specific organizations that advocates for better health-care treatments for genetic illnesses. Her organization is also part of the Alliance for Taxpayer Access, a growing coalition of organizations and institutions that support open online access to federally funded research.

Sharon's advocacy for public access stems not only from her experience, but also from first-hand knowledge of those who encounter similar barriers in using research information. Untold numbers of Americans have legitimate, pressing needs for research literature. They may want to read current and credible studies about a disease or medical condition and to make sure that their physicians are familiar with the latest health research findings; or they may be interested in an educational concern that relates to their children, or want to investigate an environmental topic that affects their community. Almost without exception, they find that their local public or academic library does not have the journals they need and they are unable to pay expensive per-article charges that mount up quickly for anyone who's doing extensive research in the journal literature.

As Mary Dempsey, commissioner of Chicago Public Library, points out, "It's extremely unfortunate that federally funded medical and scientific research is largely inaccessible to the public, and thus denied to those who originally funded it and for whom it was conducted--the American people."

Faculty also flummoxed

It's not just the general public that lacks access: College and university researchers face serious problems, too. Just ask Gary Ward, associate professor of microbiology and molecular genetics at the University of Vermont in Burlington. Ward conducts research in a specialized area of cell biology. The work that he and his departmental colleagues do is relevant to many illnesses, including cancer and AIDS.

Ward estimates that he can access 66%-75% of the articles that he needs for his research thanks to journal subscriptions and database-license agreements at the university's Dana Medical Library. For the articles that his library can't provide, he's dependent on the much-more-time-consuming process of interlibrary loan. Given time constraints and the cost of transactions, he utilizes ILL only if he's certain that the article he's seeking will be relevant. …

The rest of this article is only available to active members of Questia

Sign up now for a free, 1-day trial and receive full access to:

  • Questia's entire collection
  • Automatic bibliography creation
  • More helpful research tools like notes, citations, and highlights
  • Ad-free environment

Already a member? Log in now.

Notes for this article

Add a new note
If you are trying to select text to create highlights or citations, remember that you must now click or tap on the first word, and then click or tap on the last word.
One moment ...
Default project is now your active project.
Project items

Items saved from this article

This article has been saved
Highlights (0)
Some of your highlights are legacy items.

Highlights saved before July 30, 2012 will not be displayed on their respective source pages.

You can easily re-create the highlights by opening the book page or article, selecting the text, and clicking “Highlight.”

Citations (0)
Some of your citations are legacy items.

Any citation created before July 30, 2012 will labeled as a “Cited page.” New citations will be saved as cited passages, pages or articles.

We also added the ability to view new citations from your projects or the book or article where you created them.

Notes (0)
Bookmarks (0)

You have no saved items from this article

Project items include:
  • Saved book/article
  • Highlights
  • Quotes/citations
  • Notes
  • Bookmarks
Notes
Cite this article

Cited article

Style
Citations are available only to our active members.
Sign up now to cite pages or passages in MLA, APA and Chicago citation styles.

(Einhorn, 1992, p. 25)

(Einhorn 25)

1

1. Lois J. Einhorn, Abraham Lincoln, the Orator: Penetrating the Lincoln Legend (Westport, CT: Greenwood Press, 1992), 25, http://www.questia.com/read/27419298.

Cited article

The Next Big Library Legislative Issue: Taxpayers Are Storming the Fee-Based Barricades That Keep Them from Federally Funded Research
Settings

Settings

Typeface
Text size Smaller Larger Reset View mode
Search within

Search within this article

Look up

Look up a word

  • Dictionary
  • Thesaurus
Please submit a word or phrase above.
Print this page

Print this page

Why can't I print more than one page at a time?

Full screen

matching results for page

Cited passage

Style
Citations are available only to our active members.
Sign up now to cite pages or passages in MLA, APA and Chicago citation styles.

"Portraying himself as an honest, ordinary person helped Lincoln identify with his audiences." (Einhorn, 1992, p. 25).

"Portraying himself as an honest, ordinary person helped Lincoln identify with his audiences." (Einhorn 25)

"Portraying himself as an honest, ordinary person helped Lincoln identify with his audiences."1

1. Lois J. Einhorn, Abraham Lincoln, the Orator: Penetrating the Lincoln Legend (Westport, CT: Greenwood Press, 1992), 25, http://www.questia.com/read/27419298.

Cited passage

Welcome to the new Questia Reader

The Questia Reader has been updated to provide you with an even better online reading experience.  It is now 100% Responsive, which means you can read our books and articles on any sized device you wish.  All of your favorite tools like notes, highlights, and citations are still here, but the way you select text has been updated to be easier to use, especially on touchscreen devices.  Here's how:

1. Click or tap the first word you want to select.
2. Click or tap the last word you want to select.

OK, got it!

Thanks for trying Questia!

Please continue trying out our research tools, but please note, full functionality is available only to our active members.

Your work will be lost once you leave this Web page.

For full access in an ad-free environment, sign up now for a FREE, 1-day trial.

Already a member? Log in now.