HOW PRIVATE ARE ONLINE SUPPORT GROUPS?

Be aware, online support groups may not be as private or effective as you might think. Some researchers, in turning to the Internet to gather data, have posed as distressed online support group members, posting false messages and recording the responses they get. This kind of unconsenting participation in a study can potentially harm online support group users, violating their privacy and possibly manipulating the outcomes of the group's discussions.

A recent gathering of the Association of Internet Researchers, focused on online research ethics, discussed the possible pros and cons of these research methods. Many felt that failing to obtain consent before monitoring Internet support groups, chat rooms, discussion groups, etc. could adversely affect the participants. Not only might a discovered invasion of privacy make group members untrusting of each other and withholding of information, but it could also redirect discussion and prompt members to take action they may not otherwise have. Other online researchers felt that how online data is obtained is less important than how it is analyzed and reported. They were in favor of monitoring discussions, as long as the subjects were not mentioned by name in research papers. They remarked that seeking consent from an online support group might cause members to censor themselves, thus making observation of natural settings difficult. Guidelines for Internet research are expected to be drafted in the next year. Patients who are currently participating in online support groups may benefit from a reminder that all information, support group discussion included, that is posted on the Internet is susceptible to use in ways with which they may not be comfortable or aware.

-Based on a story from USAToday 9/15/00

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