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Science Goes Medieval

Geneticists agree: hoarding information hurts science–and public health.

A few years back, I fretted in print that, given the mounting proprietary claims in some scientific fields, we risked entering a new kind of Dark Ages, replete with warring fiefdoms tightly guarding their knowledge. Okay, I admit the metaphor was a bit heavy handed. But with the “new economy” so obsessed with intellectual property, I could see just how frequently secrecy was replacing the collegial, open exchange of scientific information.

At the time, many mainstream pundits scoffed at my gloomy assessment. BusinessWeek wittily dubbed the idea “patent nonsense.” (Boy, that stung!) Well, I’m sticking to my guns, especially after seeing the results of a survey of geneticists published earlier this year in the Journal of the American Medical Association (available for a fee at www.jama.ama-assn.org). I don’t know what the BusinessWeek folks would say, but to my eye, the problem of secrecy looks worse than ever.

In this study, a team of researchers, led by Eric Campbell at Massachusetts General Hospital, surveyed 1,240 geneticists at 100 universities. Among the findings: Nearly three-quarters of the scientists (73 percent) report that the withholding of data among their colleagues is slowing progress in their field. Sixty-three percent say the situation is harming relationships with their peers. More than half hold that their colleagues’ refusals to share data or materials have adversely affected research and the education of their students. In short, they are not a happy lot.

Some of the survey’s specific findings are even more worrisome. Consider:

- 24 percent of geneticists say the lack of sharing in their field has caused them to
abandon promising lines of research.

- 28 percent note that the decline in data sharing has prevented them from replicating
published research. (Another stunner! Replication of results is a requisite for scientific
progress.)

These findings are especially noteworthy because the robust exchange of information is a central tenet in science, where knowledge quite literally grows by being shared. It’s a lot like the parable of the blind men who each approached a distinct part of an elephant and mistakenly believed the whole beast was like their own small portions. It’s hard enough to grope your way in the dark; but it’s virtually impossible to grasp the big picture without a whole lot of information-sharing. In science, an increase in secrecy is not just an unpleasant fact of life but a threat to the entire enterprise.

One astute observer, Robert Cook-Deegan, director of the National Cancer Policy Board, maintains that two primary factors influence the pace of innovation: the level of resource deployment (mainly funding) and the speed of information flow. I’m convinced he’s right. High-tech analysts track closely where the money’s going and who is getting patents. But maybe we ought to pay more attention to the rate of information exchange. That’s what Eric Campbell and his team have essentially done in genetics-and the results should give us all pause.

In addition to slowing innovation, scientific secrecy also has an ethical dimension. Steven A. Rosenberg, chief of surgery at the National Cancer Institute, has complained about secrecy in biomedicine for years. Rosenberg tells the sad tale of the 17th-century Chamberlen brothers who developed the obstetrical forceps-of great value in difficult childbirths-but then kept the device secret within their practice. The brothers grew rich and famous while women and children throughout Europe-who could have been saved-died in childbirth. Three generations later, the Chamberlen family sold their secret and it became widely known. But few would claim their secrecy was ethically justifiable.

To many, modern genetics is not so different. We’re already seeing a similar kind of problem today, as high fees and proprietary rights have begun to stifle access to genetic tests like the one for predisposition to breast cancer (see “Doctors without Patents,” TR December 2001). Responding to the new survey, Nelson Kiang, professor emeritus of physiology at MIT, notes that the trend toward greater secrecy “runs completely against the scientific ethos.” As Kiang puts it, “A few people treat scientific work as a competitive sport. But our common enemy is ignorance, and we should be helping each other as fast as possible.” Given this issue’s importance, maybe we should insist that at least publicly funded research remain freely accessible to other scientists. The National Institutes of Health sensibly took a step in this direction with the Human Genome Project, requiring all NIH-funded researchers to publicly disclose their gene sequencing data within 24 hours of their discovery. But clearly, more needs to be done.

Which brings me back to the Dark Ages. Western civilization declined steadily during the 9th and 10th centuries. Why? As Joseph Strayer and Dana Munro explain in The Middle Ages: 395-1500, “Europeans seemed to have lost their ability to work together on a large scale.” In genetics as on other high-tech frontiers, let’s make sure we don’t fall into the same trap.

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