Editorial Comment

Abstract

Performing research with people who are not capable of giving their informed consent to research is sometimes justified. When ethics committees approve research with vulnerable people such as patients with dementia, emphasis is placed on obtaining informed consent from each patient's spokesperson and on confidentiality. Obtaining informed consent for research with vulnerable people is a delicate matter. On the one hand Cuénod and Gasser 1 argue that, in order to improve health and quality of life for so-called mentally incompetent people, it is important that research should be done and that too strict an application of research ethics could lead to delay in the development of knowledge. It could for example lead to the biased selection of patients for research and thus to research results that cannot be generalized. On the other hand, it has been argued that the requirements for performing research with vulnerable people should be broadened. We should use a relationship ethics approach rather than a code of ethics approach. Horner 2 stresses that research with vulnerable people should be regulated rigorously and that research should be performed only on topics that concern the participants. If the researcher is not experienced in the particular field, he or she should not carry out the research. Only good quality research should be done and the research results should be published. When applied to people with severe dementia, these suggestions mean that if we, for example, carry out research on a special quality of napkin for their use, we would not need permission to use people with dementia as research participants. It is only when the research question concerns topics that can be answered only by people with dementia of a certain degree that we can defend carrying out research with such people. Only researchers who are able to communicate with people with dementia should be allowed to perform such studies. The researcher should be able to communicate with the research participants without being perceived as threatening by these persons. Only researchers who are skilled in communicating with people with severe dementia can obtain valid information from them. Many research reports have demonstrated that such researchers obtain adequate and interesting information. 3 McCormack 4 argues that when people with dementia cannot give their informed consent to research their voice could still be heard. When their narrative identity is taken into consideration, patients with dementia can participate in decisions about research. McCormack mentions things such as paying attention to the patients' grand narratives, their life history and the feelings they express in interactions with the researcher. This underlines the importance of the researcher's competence to interact with the people they do research with or about. These arguments can be further strengthened by considering the fact that people with dementia who seem empty and unaware about themselves and their situation may suddenly and unexpectedly say something that ...