Human Subjects Research in Cyberspace

by Kurt M. Saunders

Preview

This session will consider some of the special concerns raised by research involving human subjects in cyberspace. Traditional academic research that relies on human subjects is governed by ethical standards and laws designed to protect the privacy and anonymity of the individuals serving as research subjects. Typically, an independent oversight board reviews the design of the proposed research. Likewise, proper informed consent by the subjects after an explanation of the research and an opportunity to ask questions are an integral part of the process. By contrast, these standards and laws do not bind journalistic and market research. Due to the often insecure nature of the medium itself, the conduct of online research involving human subjects presents a number of challenges to the researcher who seeks to obtain the subjects' informed consent while maintaining their privacy.

The presenters for this session are interested in generating an exchange of ideas between themselves and the attendees on the issues posed by this topic. In addition, the presenters will endeavor to suggest and explore some practical approaches to research involving human subjects in cyberspace. The session will be moderated by Professor Bruce Umbaugh, a philosopher and Director of the Center for Practical and Interdisciplinary Ethics at Webster University in St. Louis.

Panelist Amy Bruckman is an Assistant Professor of Computer Science at Georgia Tech, and founder of MediaMOO and MOOse Crossing. She has extensive experience with academic research in cyberspace, both as a principal investigator and as an advisor to graduate students. Panelist Julian Dibbell is a writer and was a longtime columnist for the Village Voice. He wrote "My Tiny Life: Crime and Passion in a Virtual World," which concerns his experiences on LambdaMOO from the point in time just before the "LambdaMOO Rape" incident, which he wrote about in a widely anthologized piece first published in the Voice. Finally, Panelist Sanyin Siang is at the American Association for the Advancement of Science (AAAS) and has co-authored, with Mark Frankel, the AAAS report on human subjects research in cyberspace.

The session will have two primary themes. The first theme addresses the special problems raised by research in cyberspace from the standpoint of the usual standards for protecting human subjects. For instance, to what extent are chat rooms or MOOs "public places" in which participants have little reasonable expectation of privacy? How do you inform potential research subjects and get their consent to participate in research? How do you follow up with them? AAAS and the National Institutes of Health Office of Protection from Research Risks hosted a workshop to address those and related questions, one product of which was the Frankel and Siang report. This session and ensuing dialogue are meant to be another such product.

As to the second theme, the panel will examine the activities of those who are engaged in what is clearly some kind of online "research" who do not consider themselves to be bound by traditional human subjects standards. For example, journalists who write about their experiences on LambdaMOO confront many of the same issues that face academic researchers, but without the formal legal constraints. Panelist Julian Dibbell discusses some of these considerations in his book, for instance: do you use real character names, since they are not the "real" names of "real people," or is some greater level of pseudonymization needed to protect people?

There are other kinds of "research" that will be addressed as well, such as police investigation and market research. The latter is especially interesting since, unlike any of the other types of research, it is typically conducted entirely for private rather than public gain and since it shows the least respect for the principles of independent oversight and respect for human subjects.

Review

The Internet has made possible new avenues of research involving human subjects. Traditional academic research involving human subjects is governed by ethical standards and laws designed to protect the privacy and anonymity of the individuals serving as research subjects. For instance, an independent oversight board reviews the design of the proposed research. Likewise, proper informed consent by the subjects after an explanation of the research and an opportunity to ask questions are an integral part of the process. Do these guidelines apply in the virtual world to protect human subjects and yet allow for scientifically sound research? This session addressed the ethical concerns raised by research involving human subjects in cyberspace.

The session was moderated by Professor Bruce Umbaugh, a philosopher and Director of the Center for Practical and Interdisciplinary Ethics at Webster University in St. Louis. The first panelist, Sanyin Siang, co-author of the American Association for th Advancement of Science report on human subjects research in cyberspace, provided an overview of the standards that govern human subjects research. She explained that such research rests on four principles: respecting subjects as autonomous individuals who must give their informed consent; maximizing possible benefits for the subjects; protecting their privacy and confidentiality; and fairly distributing the burdens and risks associated with the research. According to Siang, applying these principles to research in cyberspace is difficult because the distinction between the private and public domain is blurred and because the use of anonymity and pseudonymity may make issues of identity and anonymity ill-defined.

Panelist Amy Bruckman, an Assistant Professor of Computer Science at Georgia Tech and founder of MediaMOO and MOOse Crossing, spoke next. Using the example of doing research by lurking in a chatroom to observe record, and analyze the chats, Bruckman considered the use of analogy and genre to define possible ethical issues. Is lurking like sitting on a bench in the town square and listening to the conversations of passers-by? Is logging a chat like taking notes? Are pseudonyms the same as real names for purposes of the chat? According to Bruckman, such analogies are powerful and dangerous because the chatters' reasonable expectations of privacy are critical. Instead of analogies, she urged that the members of the online community must develop and evolve their own standards that will form the reasonable expectation of privacy.

Next, panelist Julian Dibbell, author of "My Tiny Life: Crime and Passion in a Virtual World," which concerns his experiences on LambdaMOO and the "LambdaMOO Rape" incident, considered the topic from the standpoint of journalism ethics. He noted that the ethics of journalism differ from those of scientific research in that ethical decisions are often made ad hoc, subject to less rigorous and less institutionalized standards. For instance, he had initially decided to print entire postings from LambdaMOO; however, some members asserted that they had a copyright in their postings and that his copying of the entire passage did not qualify as fair use. In effect, they resorted to copyright law to preserve their confidentiality. Dibbell concluded that the subjects' reasonable expectations of privacy must be determined on the basis of the context and nature of the subject researched.

Finally, Bruce Umbaugh added that many of these problems stem from the insecure nature of the medium itself. Consequently, he defined two principles that should apply in online human subject research. The first is the principle of equality, whereby all subjects should be treated in the same way. The second principle is that of individual control, whereby all subjects should be able to reserve control over their private information.