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Abuses of Power

Social networking sites, unchecked by authorities, are fertile ground for misinformation and unscientific experiments..

By Brandon Keim // Fall 2009

If the Internet is the information superhighway, then social networking sites, which allow people to interact more naturally than they can through e-mail or forums, are its neighborhoods—the cozy places where users actually want to spend time.

No wonder hundreds of thousands of people gather online to talk about health, either on Websites like Facebook—the biggest social networking site, which allows people to organize their own groups—or on patient-tailored sites, from big-tent PatientsLikeMe and Inspire to such targeted communities as Diabetic Connect and Disaboom, for people with disabilities. These networks magnify the Internet’s medical usefulness, helping people share information and support research. They also offer new applications, such as analyzing patients’ discussions and involving them directly in research. But as with any technology, there is potential for problems.

Networked participation in research is controversial. Excited by a promising but unpublished study on the use of lithium to treat Lou Gehrig’s disease, more than 100 PatientsLikeMe members started an ad hoc “natural experiment” of their own, run without the formal safeguards required in a clinical trial. In addition to such safety concerns, many researchers worry that the results will be skewed by patients talking to one another, influencing what are supposed to be independent experiences.

And if it’s easy to share information on social networks, it’s also easy to share misinformation. “When people are dealing with rare diseases, grasping for straws, they don’t apply the kinds of filters you’d hope they would,” says Bruce Shriver, founder of the Liddy Shriver Sarcoma Initiative, which uses Facebook to publicize its activities.

Shriver describes the hopeful credence that desperate patients place in unverified accounts of experimental treatments and overseas surgeries—a behavior that predates the Internet but is amplified by the information-sharing power of social networks. “Somebody may post a reference to a Website or an article that talks about these methods without having checked whether there’s substance,” he says. “When something like that goes out, it gets around quickly. And when someone points out that it’s not based on good science, sometimes that corrective note is missed.”


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