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Online support group members become unwilling research subjects Association of Internet Researchers By ANICK JESDANUN, Associated Press LAWRENCE, Kan. (September 16, 2000 2:50 p.m. EDT http://www.nandotimes.com) - Don't get too comfortable with your online support group. A researcher may be lurking, recording your outpourings in the name of science. In fact, a researcher posing as a member of the support group may be posting comments simply to observe the reaction from participants. As more researchers turn to the Internet for behavioral studies, there is growing concern about the potential harm to online users unaware that they have become research subjects when they discuss diseases, marital problems and sexual identity crises. Online research ethics - specifically, the lack of any meaningful guidelines - was one of the chief topics of discussion this week at the inaugural meeting of the Association of Internet Researchers. "We're waiting for a major lawsuit," said Sarina Chen, professor of communications at the University of Northern Iowa in Cedar Falls. "Many people consider downloading data from the Internet 'content analysis.' That's very naive." She ought to know: She said she almost lost her job when participants in a support group for eating disorders complained to her superiors about the tone of some postings that one of her students had made as part of a class assignment. Failing to get consent before monitoring Internet chat rooms and other discussion forums amounts to an invasion of privacy and can make participants more guarded in their dealings with one another, Chen said. In more extreme cases, other researchers warned, a posting inserted by a researcher can shift the nature of discussion and prompt participants to take action they otherwise would not. Barbara Lackritz, a leukemia survivor from St. Louis who runs more than two dozen cancer support groups, said researchers have been dropping in with increased frequency. "It's very frustrating," she said in a telephone interview. "We have all kinds of researchers, from kids who are in high school to master's degree candidates who want to do a thesis." Researchers who want to monitor her discussion groups often get permission first from group moderators, she said. But too often, she said, researchers don't ask, and "think we're a slab of people waiting to do research for them." She said one support-group participant who hadn't told his friends, family and neighbors about his cancer started getting phone calls all of a sudden from people saying, "I'm sorry." He then learned that a researcher had posted his full name and diagnosis on a Web site. Now that participant uses a pseudonym. "He was furious," Lackritz said. "In the long run, it hurt him financially and in his relationships with family." Federal law and university review boards generally prohibit experiments on humans without consent, though some observations in public settings are acceptable. But where do you draw the line between public and private on the Internet? Many discussion groups are open to the public, but participants generally assume that fellow members join because they have similar interests or concerns. That makes such forums less like a public square and more like someone's living room, said Amy Bruckman, a professor of computing at Georgia Institute of Technology in Atlanta. Other researchers, however, believe they can monitor those discussions as long as they do not identify subjects in research papers. "It's more important how data is analyzed and disseminated than how it is gathered," said Joseph Walther, professor of communications, psychology and information technology at Rensselaer Polytechnic Institute in Troy, N.Y. Storm King, a Springfield, Mass., psychologist and spokesman for the International Society for Mental Health Online, said seeking consent can actually cause participants to clam up, making observations of natural settings more difficult. The Association of Internet Researchers will probably decide Sunday to form a task force to draft guidelines by next year's meeting, said Stephen Jones, the group's president. David Snowball, professor of speech communication at Augustana College in Rock Island, Ill., said he was surprised when students proposed to eavesdrop on a support group and create fake traumas for the group to consider. He was even more surprised when he learned the students got the idea from other faculty members, who believed the practice was OK because participants would probably never know. "The online world is still new and opens up all sorts of ways of doing research," said Charles Ess, a professor in cultural studies at Drury University in Springfield, Mo. "It's much easier to lurk in a chat room undetected than it is to stand in a room and take notes."