Knowledge, responsibility, decision making and ignorance:

This article is concerned with the question of how to argue about morality and ethics in relation to a severe and deadly hereditary disease. It is inspired by the uneasiness I have felt on a number of occasions when “right and wrong” is being discussed by persons at risk, professionals and in particular when discussed by outsiders. This task is not an easy one and the article tries to lay out more groundwork than it arrives at conclusions. Below follows a brief introduction to my framework and some of the concepts that are important for my way of outlining the arguments that follow. Then I take a closer look at genetic knowledge, responsibility and decision making, because these seem to be important issues in my field of study. I have added ignorance to the list in order to discuss a further aspect of dealing with hereditary disease. Interestingly, ignorance (understood both as being ignorant of and ignoring) seems to be commonly applicable to describing persons living at risk for Huntington’s Disease (HD). So what does everyday conduct of life look like from an “ignorance” perspective? And how can we discuss and argue about morality and ethics taking these seemingly diverse ways of living at risk into account? Posing this question, I hope to contribute to new reflections on possibilities and constraints in people’s lives with HD as well as in research and to open up new ways of discussing “right and wrong”

Studying Genetic Risk in the Conduct of Everyday Life

This article is a revised version of a talk given in lieu of the Ph.D. dissertation: "Huntington´s Disease in Everyday Life. Knowledge, Ignorance and Genetic Risk". The dissertation evolves around the analysis of modern living with risk for a late onset genetic disorder. Here, three aspects of everyday lives faced with Huntington´s Disease (HD) are discussed. First, HD is one aspect of everyday living along with a variety of other aspects. The importance of risk is analysed as personal and changing in changing circumstances. Second, genetic knowledge and technology are not solid universals, but situated and changing, and of varying importance in lives at risk. Last, the ethical rationalities of everyday living, research and clinical practice concerned with a hereditary condition are discussed as complex and contradictory in and across structures of social practice

Knowledge, responsibility, decision making and ignorance:

This article is concerned with the question of how to argue about morality and ethics in relation to a severe and deadly hereditary disease. It is inspired by the uneasiness I have felt on a number of occasions when “right and wrong” is being discussed by persons at risk, professionals and in particular when discussed by outsiders. This task is not an easy one and the article tries to lay out more groundwork than it arrives at conclusions. Below follows a brief introduction to my framework and some of the concepts that are important for my way of outlining the arguments that follow. Then I take a closer look at genetic knowledge, responsibility and decision making, because these seem to be important issues in my field of study. I have added ignorance to the list in order to discuss a further aspect of dealing with hereditary disease. Interestingly, ignorance (understood both as being ignorant of and ignoring) seems to be commonly applicable to describing persons living at risk for Huntington’s Disease (HD). So what does everyday conduct of life look like from an “ignorance” perspective? And how can we discuss and argue about morality and ethics taking these seemingly diverse ways of living at risk into account? Posing this question, I hope to contribute to new reflections on possibilities and constraints in people’s lives with HD as well as in research and to open up new ways of discussing “right and wrong”

Who gets involved with what? A discourse analysis of gender and caregiving in everyday family life with depression

The recent process of deinstitutionalization of the psychiatric treatment system, in both Denmark and other European countries, has relied heavily on the involvement in treatment and recovery of cohabitant relatives of diagnosed people. However, political objectives regarding depression and involvement rely on a limited body of knowledge about people’s ways of managing illness-related problems in everyday life. Drawing on a discursive notion of gender laid out by Raewyn Connell, the aim of the article is to elucidate how the involvement of relatives is guided by an extra- individual rationale about gender and caregiving, and how this gendered discourse might frame different challenges and burdens, depending on the gender of the diagnosed person and the cohabitant relative. Drawn from a larger, multisited field study on involvement processes in Danish psychiatry, the article is based on field notes and 21 interviews with seven heterosexual couples. The analysis shows that gender works as a decisive premise for the division of caregiving labour among the couples, and clarifies how the couples’ gendered institution is disrupted after the onset of depression. The article argues that gender-blind involvement strategies could produce divergent treatment outcomes and varying social effects in relation to couples’ everyday family lives.

Studying Genetic Risk in the Conduct of Everyday Life

This article is a revised version of a talk given in lieu of the Ph.D. dissertation: "Huntington´s Disease in Everyday Life. Knowledge, Ignorance and Genetic Risk". The dissertation evolves around the analysis of modern living with risk for a late onset genetic disorder. Here, three aspects of everyday lives faced with Huntington´s Disease (HD) are discussed. First, HD is one aspect of everyday living along with a variety of other aspects. The importance of risk is analysed as personal and changing in changing circumstances. Second, genetic knowledge and technology are not solid universals, but situated and changing, and of varying importance in lives at risk. Last, the ethical rationalities of everyday living, research and clinical practice concerned with a hereditary condition are discussed as complex and contradictory in and across structures of social practice.</span

Patient perspectives and experience on the diagnostic pathway of lung cancer:A qualitative study

Objectives: Lung cancer is one of the most common types of cancer, with high mortality rate and a significant burden of symptoms. It is therefore important to assess patients' perceived quality of life during the diagnostic process and treatment. Knowledge of and attention to patients' perspectives, experiences, and expectations in relation to lung cancer diagnostic pathways is limited. The aim of the study is to contribute with patients' and relatives' experiences with and their assessment of the quality of a hospital-based lung cancer diagnostic pathway.Methods: A qualitative study was conducted, comprising participant observation with 20 patients and semi-structured interviews with further 19 patients referred to the Lung Cancer Package, which initiates a fast track diagnostic pathway in a hospital setting. Data were obtained over a period of 9 months and analysed in collaboration with an interdisciplinary team of health professionals. The purpose was to further develop existing management strategies of the fast track diagnostic pathway based on patient's perspectives.Results: Patients associated the fast track diagnostic pathway with high levels of anxiety due to the immediate risk of a lung cancer diagnosis. Although patients experienced the fast track programme as very challenging, they still wanted to move through the diagnostic pathway as quickly as possible. The patients expressed a need for support from relatives and repeatedly required information in multiple formats from health professionals throughout the diagnostic pathway.Conclusions: The study provided insight into the need for developing the fast track diagnostic pathway with a focus on patient anxiety, network involvement, and information strategies. The results qualified clinical practice with an increased focus on managing patients' anxiety, raised awareness to involve relatives in the diagnostic process, and relaying information in dialogue with patients and their relatives, including management strategies to support patients through diagnostic investigations in the fast track programme.</p