Qualitative research is largely dependent on building good interpersonal relations between researcher and participant. This is necessary for generating rich data, while at the same time ensuring respect is maintained between researcher and participant. We argue for a better understanding of researcher–participant relations in research practice. Codes of ethics, although important, do not address these kinds of ethical challenges. Negotiating the ethical relations between researcher and participant is paramount in maintaining ethical rigour in qualitative research. In this paper we propose (...) concepts that can assist in understanding how the ethics of research relations are negotiated in practice; the ‘zone of the untouchable’ from the Danish philosopher, Løgstrup, is combined with the notion of ‘ethical mindfulness’. We argue how and why these concepts in tandem can heighten awareness and offer ways to address the ethically important moments in research. (shrink)

History has demonstrated the necessity of protecting research participants. Research ethics are based on a concept of asymmetry of power, viewing the researcher as powerful and potentially dangerous and establishing ethics committees as external agencies in the field of research. We argue in favour of expanding this perspective on relationships of power to encompass the ethics committees as one among several actors that exert power and that act in a relational interplay with researchers and participants. We employ Michel Foucault’s ideas (...) of power as an omnipresent force which is dynamic and unstable, as well as the notion that knowledge and power are inextricably intertwined. The article discusses how research ethics committees may affect academic freedom. In addition it is pointed out that research participants could be harmed — not only by unfortunate research practices, but also by being subjected to the protective efforts of ethics monitoring bodies. (shrink)

Background Research on genomics has increased while the biobank activities are becoming more common in different countries. In the mental health field, the questions concerning the potential participants’ vulnerability as well as capacity to give the informed consent can cause reluctancy in recruiting persons with mental health problems, although the knowledge and understanding of mental health problems has remarkable changed, and practice is guided with inclusive approaches, such as recovery approach. Aim The aim of this study was to describe the (...) current knowledge of informed consent practices in the context of genomic research on mental health from the nurses’ viewpoint. Methods An integrative review was conducted with search from seven international databases. Data consist 14 publications which were analyzed with thematic analysis. Ethical considerations Ethical requirements were respected in every phase of the research process. Findings Most of the papers were published in USA and between 2000–2010. Eight reports were categorized as discussion papers, four qualitative studies and one quantitative study. The thematic analysis provided information on five themes: complexity with the capacity to consent, mixed emotions towards participation, factors influencing the decision to participate, nurses’ informed consent process competence and variations between consent procedures. Discussion In the informed consent practices, there are various aspects which may affect both the willingness to participate in the study and the informed consent process itself. Implications for practice, education, research, and policies are discussed. Conclusion There is a need for more updated international research on the topic in the context of different international and national guidelines, legislation, and directives. This study provided a viewpoint to the more collaborative research activities with people with lived experiences also in this field of research following the ideas of recovery approach. (shrink)

The aim of this article is to show the importance of moral sensitivity when including persons with dementia in research. The article presents and discusses ethical challenges encountered when a total of 15 persons with dementia from two nursing homes and seven proxies were included in a qualitative study. The examples show that the ethical challenges may be unpredictable. As researchers, you participate with the informants in their daily life and in the interviews, and it is not possible to plan (...) all that may happen during the research. A procedural proposal to an ethical committee at the beginning of a research project based on traditional research ethical principles may serve as a guideline, but it cannot solve all the ethical problems one faces during the research process. Our main argument in this article is, therefore, that moral sensitivity is required in addition to the traditional research ethical principles throughout the whole process of observing and interviewing the respondents. (shrink)