Whether or not the ESG was originally set up for research purposes, the
approval of an Institutional Review Board (IRB) or Research Ethics Board (REB)
should be sought before proceeding with research involving a health-related
ESG.
An example of a Shared or Tacit Model
I have suggested previously3 that the Breast-Cancer mailing list (BCML)
provides a good example of a Shared or Tacit Model of navigation. The BCML,
established in early 1994, is an unmoderated English-speaking ESG. It is based
at Memorial University of Newfoundland in St. John's, and had about 320
subscribers on January 1, 2004. Although the server that supports the BCML is
located in Canada, the majority of members are located in the United States.
A Web site for the BCML is available.5 Via this Web site, it is possible to
join or leave the mailing list and open access is provided to archives of
messages posted to the list. Messages stored in such open archives clearly
should be regarded as publicly accessible documents (even if those who posted
them have not designated them as belonging in the public domain). However,
some privacy is provided by the likelihood that this small, but active, segment of
cyberspace may be of limited interest to anyone other than those directly
involved with breast cancer. Also, even though the archives can be searched
internally using key words, they are not accessible to popular search engines,
such as Google.6
The volume of mail and the number of off-topic messages, while
facilitating some privacy, are sometimes a cause for complaints. On the other
hand, the number of BCML members and the number who actively participate
are sufficient to ensure that new subscribers will be able to identify appropriate
"tacit peer-navigators". Such peers can help new members find their way through
the various phases of the cancer journey. Initial exchanges of information and
provisions of support occur on the list, but may subsequently move off the list.
Exchanges of private email messages appear to happen frequently. And, for
those list members who discover that they live close to each other, face-to-face
meetings can be arranged. Interactions of this kind can enhance both social
support and privacy.
Some issues in Internet research ethics
The existence of open archives of messages posted to ESGs (such as the
BCML) poses some novel challenges in research ethics for ESG researchers
and scholars. The BCML was not established as part of a research protocol. The
participants have not given their informed consent to serve as participants in a
research program. Yet, the BCML and its open archives can serve as a rich
source of qualitative data about, for example, the needs, values, and
preferences of healthcare consumers.7
From a biomedical perspective, participants in existing ESGs that were
not set up for research purposes should still be regarded primarily as research
subjects, and the proposed research protocol should be reviewed by an IRB or
REB. For example, the members of an IRB, not the researchers themselves,
should make the decision about the extent to which an open ESG, such as the
BCML, should be regarded as a semiprivate (rather than public).