From this biomedical perspective, well-known principles of research
ethics, such as those outlined in the Belmont Report,8 may provide appropriate
guidance. Issues that merit attention include:
! respect for persons;
! informed consent;
! privacy and confidentiality;
! potential benefits vs. potential harms; and
! justice and fairness in the distribution of such benefits and harms.
Although guidelines and proposals for Internet research ethics are usually
based on those designed for human subjects research, researchers in the
humanities may have quite different perspectives. They may be aware of
instances in which human subjects guidelines do not apply to complex Internet
material. Some examples are provided in contributions to a panel presentation
organized for a conference on Internet research ethics held in December 2001.9
From this perspective, one can ask in relation to participants in an ESG: "Are
participants in this environment best understood as subjects (in the context of
human subjects research in medicine and social sciences) or as authors whose
texts/artifacts are intended as public?"10
An in-depth consideration of this question is beyond the scope of this
commentary. However, one answer is that participants in ESGs should
sometimes be regarded as research subjects, sometimes as authors, and
sometimes as members of a community. Perhaps most often, they should be
regarded as some combination of all three, depending on the context and the
preferences of the individual ESG participants. Above all, the Belmont principle8
of respect for persons should prevail.
CONCLUSION
ESGs are an Internet application area of great interest, especially from
the perspective of integrative cancer research. Evidence has accumulated about
their many advantages, as well as their disadvantages. They can be regarded as
navigation aids that can help participants find an appropriate path through the
healthcare system and serve as a guide to the cancer journey. The quality of
ESGs as navigation aids should be evaluated. The Facilitating Navigator Model
appears to be an appropriate conceptual model for the navigator role for
professionally moderated ESGs that have been set up specifically for research
purposes. In contrast, a Shared or Tacit Model appears to be a more appropriate
model for unmoderated ESGs. Both models raise issues in Internet research
ethics that must be addressed.
ACKNOWLEDGMENT