Ethical issues in qualitative research on internet communities

The internet is the most comprehensive electronic archive of written material representing our world and peoples' opinions, concerns, and desires. Physicians who surf the internet for the first time are often stunned by what they learn on websites set up by lay people or patient self support communities. Material on these venues can be a rich source for researchers interested in understanding the experiences and views of people and patients. Qualitative analysis of material published and communicated on the internet can serve to systematise and codify needs, values, concerns, and preferences of consumers and professionals relevant to health and health care. While the internet makes people's interactions uniquely accessible for researchers and erases boundaries of time and distance, such research raises new issues in research ethics, particularly concerning informed consent and privacy of research subjects, as the borders between public and private spaces are sometimes blurred. #### Summary points Internet communities (such as mailing lists, chat rooms, newsgroups, or discussion boards on websites) are rich sources of qualitative data for health researchers Qualitative analysis of internet postings may help to systematise and codify needs, values, and preferences of consumers and professionals relevant to health and health care Internet based research raises several ethical questions, especially pertaining to privacy and informed consent Researchers and institutional review boards must primarily consider whether research is intrusive and has potential for harm, whether the venue is perceived as “private” or “public” space, how confidentiality can be protected, and whether and how informed consent should be obtained Internet communities provide a way for a group of peers to communicate with each other. They include discussion boards on websites, mailing lists, chat rooms, or newsgroups. Examples of health related mailing lists can easily be found by inserting a key word such as “cancer” in the search box at the …