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(OPML) and the Prostate Problems Mailing List (PPML) are unmoderated discussion lists for patients, family,
friends, researchers, and physicians. At present, there are 1213 subscribers to OPML and 1711subscribers to PPML.
Recently, researchers have been discussing the ethical issues surrounding the study of electronic
discussions. Many scholars contend that, although personal, discourse on the Internet is public and is not subject to
Human Subject constraints (Sudweeks & Rafaeli, 1995). Nonetheless, the present research went through the Human
Subjects Review Board at a state university and was approved.
About the messages received
A post is a response to someone’s message or a start of a new topic or line of inquiry (also called a thread).
Messages are most often given a short description under the Subject heading. Posters were identified by their e-mail
address and signatures, and occasionally by the content of the messages. It was assumed that all posters gave
accurate and honest information about their identities.
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Many persons have long, elaborate signatures that get posted
with each message, referred to as their footer, cancer digest, or signature file. The cancer digest is a highly technical
message that includes all the pertinent medical information for that poster such as, date of diagnosis, prognosis,
treatments, and results of tests. New PPML subscribers were encouraged to include a digest and all complied. Other
signatures take on the appearance of a business card with addresses, phone numbers and fax numbers given.
Who participates?
A total of 170 subscribers posted messages to the Ovarian Problems Mailing List during the time
analyzed. Women who have or have had ovarian cancer were the most active participants, representing 78.82%
(n=134) of the subscribers. These patients posted a total of 1256 messages. The list appeared to have a core group
of subscribers, with 12 women posting 42% of the messages (524 posts). Some family members, friends, and
concerned others also participated (212 posts). Few males (n=17) and health care professionals posted messages (a
nutritionist and psychologist). Only one medical doctor posted messages, but she was not a cancer specialist. She
posted messages as an ovarian cancer patient.
A total of 213 subscribers posted messages to the Prostate Problems Mailing List during the time analyzed.
Like in the OPML, men who have or have had prostate cancer are the most active posters on the Prostate Problems
Mailing List representing 82.63% of the subscribers (n=176). These patients posted a total of 616 messages. Four
male medical doctors, invited by patients to participate on the list, posted 227 messages. One of these doctors was
Convention