Research, Marketing and
The discussion in the preceding chapters has focused on the ethics of electronic patient records in relation to patients, health care professionals, informatics specialists and health care institutions. However, there are significant information-centred ethical issues that have not as yet been addressed because they do not fit comfortably into the traditional understanding of these rubrics. These are issues that arise in such contexts as experimentation and research, post-marketing surveillance studies, information networks designed to protect the health of patients, networks intended to minimize health care abuses, information systems designed to ensure public safety, and so on. The discussion in this chapter will attempt to sketch some of the more central ethical concerns that arise in this connection. Once more, the discussion will be very narrowly focused: It will deal only with issues that relate to electronic patient records. While inevitably this will leave out many issues that are important in their own right and that deserve analysis and discussion, an appropriate treatment of them would transcend the scope of the present investigation.
Research is the attempt to develop new information about some subject or other. Research, therefore, is data-centred. In health care, research can take many forms. It can range from investigations of in vitro cell cultures and tissue preparations to experimentation with human subjects or groups of subjects. Likewise, it may be health focused, or involve an analysis of marketing techniques to enable a particular manufacturer to secure a