September 1, 2001
WIRED MAGAZINE

The Citizen Scientists (continued)

Working from home, Iversen has teamed up with scientists to analyze “hot spots,” or unstable regions on a chromosome. She sounds almost giddy as she describes the process of comparing, or BLASTing (as in Basic Logical Alignment Search Tool), human gene sequences against those of yeast, fruit flies, and mice.

The click-and-hit simplicity of the Internet still amazes Iversen, who early on had to hire a local geek to download scientific files. “Then,” she says, “Netscape became available and I got on Grateful Med. That was very expensive—we paid a couple thousand dollars per quarter to get those abstracts. But then, three years ago, all these incredible medical databases suddenly became free, and that was heaven.”

These days, she subscribes to 20 journals a month, plus another five virtual journals, created by entering a series of search terms that track and comb articles in BioMedNet, a Web site of international biomedical literature.

BioMedNet, like Medline, is free and accessible to anyone willing to spend the time to learn how to use it. In addition, a growing number of scientific and medical journals are moving away from expensive paper versions to electronic ones. A consortium of top scientists—including Harold Varmus, former head of the National Institutes of Health—has called for an online public library that would provide the full searchable contents of all journals six months after publication. More than 24,000 scientists from 165 countries have signed an open letter pledging to publish only in those journals that agree to these conditions.

“You can literally be a gene hunter in the privacy of your home while the kids are asleep in their beds at night,” says Iversen. “That’s how much information is available and easy to use.”

For many, however, the arcane vocabulary of Medline is frustrating and the information on many Web sites is commercially suspect. “People often call us, they’ve been on the Internet, and they don’t know what to believe,” says Abbey Meyers, president of the National Organization for Rare Disorders. “Sometimes they can’t sense whether it’s a pharmaceutical company trying to push a drug. The question is, Where can you find unbiased, understandable information?”

The Internet’s rumor mill has proved a constant challenge. A few years ago, word began circulating on Lou Gehrig’s disease sites (of which there are 23,600) about the benefits of Neurontin, an anti-seizure medication. Scores of patients began taking the drug, even though there was no scientific evidence of its usefulness. So many patients, in fact, that scientists conducting trials of two other drugs for Lou Gehrig’s disease couldn’t find enough non-drug-taking patients to form a control group. When a study of Neurontin was finally done, the results were disappointing; Neurontin was shown to have no effect on Lou Gehrig’s disease.

The once-robust filtering process, on which the medical profession has relied, is no longer in effect. On the Net, everything is up for discussion—even treatments like immunizations that were once considered the gold standard in medicine.

It was the dark side of immunizations that led four fathers of autistic children to approach the UC Davis School of Medicine in 1997 with the idea of building a research and treatment center. The school welcomed the proposal, and the men raised more than $6 million for the MIND Institute, an acronym for Medical Investigation of Neurodevelopmental Disorders.

“Parents came to us because there was too much out there,” says David G. Amaral, a UC Davis professor and the research director of the institute. “They knew they had to form a collaboration with card-carrying scientists they could trust, to help them evaluate this barrage of information.”

Key in the word “autism” and you come up with more than 450,000 hits, compared with 108,000 for child leukemia or 43,000 for Down’s syndrome. There are dozens of autism mailing lists, specializing in diet, allergies, gastrointestinal problems, and the real bugaboo—vaccines, which many parents believe to be the cause of the condition. Permeating all this is the outspoken belief that autism has reached epidemic proportions.

“If you try to find any scientific evidence, we don’t have it,” cautions Amaral. “There hasn’t been a reliable epidemiological study—and that’s an example of the contrast between the rigors of science and the Internet.”

But even the most reluctant scientists are starting to accept that the Net isn’t going away. The MIND Institute is funding three projects to study the link between vaccines and autism, and has plans to fund another on the possible role of thimerosal, a mercury-based preservative that, until recently, was added to many vaccines.

This decision was influenced, in part, by an Internet campaign led by Lyn Redwood, a nurse practitioner in Tyrone, Georgia, who has argued vociferously against thimerosal at medical conferences, congressional hearings, and public meetings of the Centers for Disease Control and Prevention. Redwood is convinced that her son’s autism is the result of three thimerosal-containing vaccines he received at pediatric visits in 1994. Thousands of parents, apparently, share her belief. Redwood started her mailing list on thimerosal with two posts in January 2000; by September, the number of monthly posts clocked in at more than 2,000.

MIND Institute researchers weren’t the only people to hear the clamor. Last year, the CDC announced that thimerosal would be removed from childhood vaccines.

Thimerosal-containing vaccines already in circulation, however, will not be recalled, and so Redwood’s battle continues. As she says, “We deserve to know what happened to our children.”

There’s a lot of questionable information out there: sites brimming with testimonials for herbal teas that cure colon cancer, nutritional supplements that reverse Down’s syndrome, and low-voltage “zappers” that kill bacteria and viruses. Such stories are commonplace.

But look online and you’ll also find something more: a spirit of community; a level of candor rarely broached in polite conversation; and a warehouse of information, often routinely monitored by medical specialists.

Before the Internet, parents like Jannine Cody and Sharon Terry had no one to talk to, let alone any political clout. These medical outsiders may have started with modest goals, but their reach has extended to the highest levels, affecting the way scientific research and clinical trials are conducted and how doctors practice medicine.

And the Citizen Scientists log on.

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