The internet is widely used for health information and support, often by vulnerable people. Internet-based research raises both familiar and new ethical problems for researchers and ethics committees. While guidelines for internet-based research are available, it is unclear to what extent ethics committees use these. Experience of gaining research ethics approval for a UK study (SharpTalk), involving internet-based discussion groups with young people who self-harm and health professionals is described. During ethical review, unsurprisingly, concerns were raised about the vulnerability of (...) potential participants. These were dominated by the issue of anonymity, which also affected participant safety and consent. These ethical problems are discussed, and our solutions, which included: participant usernames specific to the study, a closed website, private messaging facilities, a direct contact email to researchers, information about forum rules displayed on the website, a ‘report’ button for participants, links to online support, and a discussion room for forum moderators. This experience with SharpTalk suggests that an approach to ethics, which recognises the relational aspects of research with vulnerable people, is particularly useful for internet-based health research. The solutions presented here can act as guidance for researchers developing proposals and for ethics committees reviewing them. (shrink)

As users of computer networks have become more active in producing their own electronic records, in the form of transcripts of onlinediscussions, ethicists have attempted to interpret this new situation interms of earlier models of personal data protection. But thistransference results in unprecedented problems for researchers. Thispaper examines some of the central dichotomies and paradoxes in thedebate on research ethics online in the context of the concrete study ofa virtual community that we carried out. We argue that alienation, notprivacy, is (...) the actual core of the ethical problems of virtual communityresearch. While practically everybody is allowed and often welcome tojoin online communities (which undermines the claim to privacy), mostparticipants would agree that members and visitors are not authorized touse, or `harvest,'' or sell the product of the group communication. To dothat, they would be expected to ask for permission preferably before thecontent has been produced, thus granting participants'' right to controltheir own product. This `non-alienation principle'' should be the basisof emergent social conventions in cyberspace. It would apply toresearchers as to anyone else. With certain types of research, wesuggest, cyberspace provides unique opportunities for empoweringsubjects by involving them as contributors in the research project. (shrink)