ONLINE PRIVACY: Researchers Observing Support Groups Raises Concerns
In the absence of official guidelines, privacy advocates are increasingly concerned about online researchers who use online support group participants as unknowing research subjects "when they discuss diseases, marital problems and sexual identity crises," the AP/Arizona Daily Star reports. Online research ethics was a central theme at last week's inaugural meeting of the Association of Internet Researchers. While federal law and most university review boards prohibit research on people without consent, "some observations in a public setting are acceptable," and more researchers at turning to the Internet for behavioral studies. University of Northern Iowa Communications Professor Sarina Chen said, "Many people consider downloading data from the Internet 'content analysis.' That's very naive." She added that monitoring online chat rooms without consent "amounts to an invasion of privacy." According to Barbara Lackritz, a leukemia survivor who runs more than two dozen online cancer support groups, researchers have been accessing the sites more frequently. Lackritz said, "It's very frustrating. We have all kinds of researchers, from kids who are in high school to master's degree candidates who want to do a thesis." Many discussions are open to the public, and members usually take part because of common concerns or interests, leading to a comfortable, open atmosphere. However, some researchers suggest that alerting the group to their presence can skew the group's discussion. Some believe monitoring is acceptable, as long as the subjects are not identified in research results. Storm King, a psychologist and spokesperson for the International Society for Mental Health Online, said asking for consent to join may cause participants to be more reserved in their responses making "natural" observations more difficult (Jesdanun, 9/17).This is part of the California Healthline Daily Edition, a summary of health policy coverage from major news organizations. Sign up for an email subscription.