The family was poor, living on the Great Plains, and the child had a rare medical condition.
"Here's what we can do," the family doctor told them. But it didn't work, recalled Michael Keller, who oversees the libraries at Stanford University. "So the family went to the Internet."
Soon they were back at the doctor's office with a report of a new therapy. "They plunked it down and said, 'Hey, can we try this?' And guess what? It worked."
Such tales are becoming increasingly common, but the happy endings come at a cost -- literally. That is because the vast majority of the 50,000 to 60,000 research articles published each year as a result of federally funded science ends up in the hands of for-profit publishers -- the largest of them based overseas -- that charge as much as $50 to view the results of a single study online. The child's parents, Keller said, paid for several papers before finding the one that led them to the cure.
Why is it, a growing number of people are asking, that anyone can download medical nonsense from the Web for free, but people must pay to see the results of carefully conducted biomedical research that was financed by their taxes?
$9 billion industry
The Public Library of Science aims to change that. The organization, founded by a Nobel Prize-winning biologist and two colleagues, is plotting the overthrow of the system by which scientific results are made known to the world -- a $9 billion publishing juggernaut with subscription charges that range into thousands of dollars per year.
In its place the organization is constructing a system that would put scientific findings on the Web -- for free.
The Public Library of Science -- or PLoS -- has begun to make "open access" scientific publication an everyday issue, emphasizing that taxpayers fund the lion's share of biomedical research and deserve access to the results.
"It is wrong when a breast cancer patient cannot access federally funded research data paid for by her hard-earned taxes," Rep. Martin O. Sabo, D-Minn., said recently as he introduced legislation that would give PLoS a boost by loosening copyright restrictions on publicly funded research. "It is wrong when the family whose child has a rare disease must pay again for research data."
The universe of scientific journals includes about 28,000 titles. In recent decades, however, journals have found that scientific communication can be not only a service but also a potent moneymaker.
Many commercial publishers -- the biggest include Elsevier and Wolters Kluwer, both of Amsterdam; Blackwell Publishers of England, and BertelsmannSpringer of Germany -- charge between $1,000 and $5,000 for a one-year subscription to their journals.
Publishers defend their prices largely by pointing to the extra services they provide. Not only must they pay for publication and mailing, they say, but they also hire peer reviewers, editors and contributors to write commentaries and review articles.
In October, critics say, the real test of that will begin, as PLoS begins the first of a series of journals dedicated to the free sharing of results. The aim is to get the world's best scientists to submit their best work to PLoS.
Instead of having readers pay for scientific results, costs would be borne by the scientists who are having their work published -- or by the government agencies or other groups that fund the scientists -- through upfront charges of about $1,500 an article.
"Our goal," said PLoS executive director Vivian Siegel, "is to transform the landscape completely."