Ethical and Legal Aspects of Human Subjects Research in Cyberspace

Report | Agenda | Participants

As cyberspace rapidly becomes a rich medium for communication and the number of users increases, it is becoming an attractive target for social and behavioral research. The ease with which the cyberspace medium allows for these types of studies also raises issues about the ethical and legal dimensions of such research. The ability of a researcher to anonymously or pseudonymously record interactions on a site without the knowledge of the participants, the complexities of obtaining informed consent, the over-rated expectation, if not the illusion of privacy in cyberspace, and the blurred distinction between public and private domains fuel questions about the interpretation and applicability of current policies for governing the conduct of social and behavioral research involving human subjects.

To promote discussion of these issues, the AAAS Program on Scientific Freedom, Responsibility and Law, in collaboration with the NIH Office for Protection from Research Risks, convened a workshop on conducting Internet research involving human subjects. A report of the workshop was prepared by AAAS staff.


Agenda

Session I: Benefits and Risks

  • What constitute “benefit” and “harm/risk” in the virtual domain? In Internet research, how can benefits, risks, and harms be assessed?
  • How can one assess long-term benefits or harm? How can follow-up be conducted for a study of an online community in which the participants are anonymous or pseudonymous, or when participants are no longer members of the community, or when the community itself no longer exists in cyberspace?
  • Are there any special vulnerabilities among prospective subjects that might be relevant to evaluating risk of participation in Internet research?

Session II: Informed Consent and Deception in Internet Research

  • What are the requirements of informed consent for Internet research? By what mechanisms can it be obtained from virtual communities and from individuals?
  • How can informed consent of subjects be authenticated online?
  • How should consent be obtained in a community that has variable members, who may be from different cultures, with some participating in the research and some not?
  • How should researchers apply the special informed consent requirements for minors in cyberspace?
  • How do our traditional understandings of reciprocity and trust between researchers and those they study play out in research on the Internet?
  • When is the use of deception permissible in online research?
  • How should debriefings be conducted for members of an online community?

Session III: Protecting Privacy and Confidentiality of Research Subjects

  • How should “reasonable expectation of privacy” be defined in cyberspace?
  • What information belongs in the private and public domains in cyberspace? Are lists and chatrooms, for instance, public?
  • What, if any, responsibilities do researchers have to protect the online identities of research subjects?
  • Are descriptions of rooms and characters quotable without permission, or would these texts be considered part of the character/user?
  • What security provisions should be adopted when creating, storing, accessing, or transferring on-line data?

Session IV: Justice

  • How, if at all, does the Internet, alter our understanding and application of justice in the context of human research?
  • Given the wide disparity in usage of the Internet among groups within American society, let alone internationally, how should justice be defined when designing and evaluating social and behavioral research online?
  • How can the fruits and burdens of research be distributed so that those at risk in online research are likely to benefit? How can this be achieved when subjects are anonymous or pseudonymous?

Session V: IRB Guidance and Developing a Research Agenda

  • In what areas can preliminary recommendations be made?
  • What issues merit priority in a research agenda?
  • How can further research on these issues be fostered?

Workshop Participants

Amy Bruckman
Georgia Institute of Technology

Warren Ashe
IRB
Howard University

Donald Bersoff
Villanova Law School

Melinda Bier
James S. McDonnell Foundation

Craig Childress
International Society of Mental Health Online

Jeffrey Cohen
OPRR
National Institutes of Health

Neal Dickert
Department of Clinical Bioethics
National Institutes of Health

Rebecca Dresser
Washington University School of Law

Gary Ellis
OPRR
National Institutes of Health

Juli Espinoza
IRB, Stanford University

Mark S. Frankel
AAAS

Michael Gallo
Florida Institute of Technology

Rachelle Hollander
National Science Foundation

John Kennedy
Center for Survey Research
University of Indiana at Bloomington

Storm A. King
Pacific Graduate School of Psychology

Malcolm Parks
University of Washington

Ivor Pritchard
Office of Educational Research and Improvement Department of Education

Tom Puglisi
OPRR
National Institutes of Health

Stephen A. Sherblom
Washington University

Sanyin Siang
AAAS

Jim Thomas
Northern Illinois University

Patricia Thomas
University of Florida

Bruce Umbaugh
Webster University