April 22, 2009 -- Carolina Solis once went to incredible lengths for, well ... poop.
"One community was a two-hour ride away on awful dirt roads, very muddy. At one point we couldn't keep going because our tires kept slipping, so I got out and walked another hour uphill just to get there," she says.
Now a fourth-year student at Harvard Medical School, Solis spent a summer doing research in San Juan del Sur, Nicaragua. Before the sun rose each morning, she boarded an old school bus bound for some of Nicaragua's most remote regions. When she finally arrived, farmers would be waiting for her, clutching small cups. The cups contained samples of their own stools, which Solis would check for evidence of certain parasites. Gathering up the samples, she then made the long trek back to San Juan del Sur.
"It smelled great," she laughs. "I was happy to be done my last day."
Her results were startling. Up to 80 percent of some communities were infected. Contaminated well water was a likely culprit.
Like many researchers, she plans to submit her findings for publication in a medical journal. What she discovered could benefit not just Nicaraguan communities but those anywhere that face similar problems. When she submits her paper, though, she says the doctors she worked with back in San Juan del Sur will probably never get a chance to read it.
"They were telling me their problems accessing these [journals]. It can be difficult for them to keep up with all the changes in medicine."
In most cases, unless a medical professional or researcher works for an organization that can afford subscriptions to medical journals, much of that research remains beyond their reach. There are thousands of different journals, and access to just the most well-regarded can run thousands of dollars a year.
Now, with Washington rushing to transform health care, a debate often limited to hospital wards, medical schools and Internet forums is pushing to the fore. It's a debate deeply rooted in beliefs about access to information -- medical research. Increasingly, a generational gap is emerging.
On one side of the gap are those who say such research should be free to all, that it's too valuable to keep firmly planted in the walled gardens of the prestigious journals that publish it. And for research that's taxpayer-funded, the public that paid for it, at least, deserves access.
On the other side of the gap are those who say the copyright interests of the journals come first. And that they're private entities spending their own money to sift through hundreds of studies, plucking the wheat from the chaff. Making more research freely available could dilute their influence, ultimately hurting genuine scientific inquiry.
Growing Up Google
"Even the old school docs who rave about 'the good old days,' still admit that having access to information at our fingertips has, essentially, made our brains bigger," says Andrew Sauer, a second-year resident at Massachusetts General Hospital. Where he works, he says, the Internet's almost as common as stethoscopes. He can even pull up journal research on his phone, thanks to the subscriptions paid for by Mass General. But outside of the hospital system, he says, "I'm going to have a hard time affording access."
The pay-to-play model doesn't jive with a generation of soon-to-be docs who "grew up Google," with information no farther than a search button away. It's a generation that never got lost in library stacks looking for an encyclopedia, or had to pay a penny for newspaper content. So it doesn't see why something as important as medical research should be locked behind the paywalls of private journals.
Copyright issues are nothing new to a generation that watched the recording industry deal its beloved original music sharing service, Napster, a painful death in 2001. Last October, it watched Google settle a class-action lawsuit brought on by book publishers upset over its Book Search engine, which makes entire texts searchable. And just last week, a Swedish court sentenced four founders of the the Pirate Bay Web site to a year in prison over making copyrighted files available for illegal file sharing. And now the long-familiar copyright war is spilling over into medicine.
Open Access Debate
Washington recently got involved. Squirreled away in the massive $410 billion spending package the president signed into law last month is an open access provision. It makes permanent a previous requirement that says the public should have access to taxpayer-funded research free of charge in an online archive called PubMed Central. Such funding comes largely from the National Institutes of Health, which doles out more than $29 billion in research grants per year. That money eventually turns into about 60,000 articles owned and published by various journals.
But Democrats are divided on the issue. In February, Rep. John Conyers, D-Mich., submitted a bill that would reverse open access. HR 801, the Fair Copyright in Research Works Act, would prohibit government agencies from automatically making that research free. Conyers argues such a policy would buck long-standing federal copyright law. Additionally, Conyers argues, journals use their subscription fees to fund peer review in which experts are solicited to weigh in on articles before they're published. Though peer reviewers aren't usually identified or paid, it still takes money to manage the process, which Conyers calls "critical."
"It provides the quality check against incorrect, reckless, and fraudulent science and furthers the overall quality and vigor of modern scientific debate," he wrote last month on the Huffington Post.
"I think it's actually the opposite," says Dr. C. Michael Gibson. He's been through the peer review process hundreds of times. "These reviewers are often your competitors. They may have an ax to grind with your information. So who died and made one person a peer reviewer?"
Gibson says it's only a matter of time before the generation that verbified "Google" abandons the more traditional journal model. A cardiologist at Beth Israel Deaconess Medical Center in Boston, he didn't grow up with the Internet but has embraced it. Four years ago, he literally borrowed a page from Wikipedia and started his own medical wiki, called WikiDoc. Like its progenitor, anyone can edit its pages. And because names are attached, Gibson says the whole process is a purer form of peer review. "In an era where information's ubiquitous, the days of highly cloistered, secretive processes are just over."
Many May Stand to Benefit From Free Information
Living in the United States now, med student Carolina Solis doesn't need to travel for hours over muddy mountain passes for medical research. Though it remains to be seen how open access policies will shake out legally and politically, she can see how they could help.
"A lot of people would benefit, especially in the developing world. They don't have the most basic things."
But they do have Google. And for the next generation of doctors the world over, nothing is more basic.
Brian Blank is a postbaccalaureate premed student at Harvard University. He works as a part-time researcher for Dr. C. Michael Gibson.