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”

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

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.

”For mine børns skyld”: Affektiv cirkulation af risiko, ansvar og køn i BRCA genetisk udredning

Genetisk udredning benyttes i stigende grad af raske mennesker, som er i risiko for at udvikle alvorlige eller livstruende sygdomme. Nogle tilfælde af brystkræft og kræft i æggestokke og æggeledere skyldes en mutation i et af de to BRCA-gener, som kan forårsage tidlig sygdom og død. Gennem interviews med kvinder, der er testet positive for en BRCA-mutation, og med en genetisk rådgiver udforsker artiklen, hvilken rolle den affektive cirkulation af risiko, ansvar og køn har i den genetiske rådgivningsproces og for valg af testning og profylaktisk kirurgi. Analysen viser, at frygt er en gennemgående følelse for kvinderne og deres familiemedlemmer både før, under og efter testning. For kvinder, og særligt  mødre, accelererer følelsen af frygt med deres egen og andres forventninger om, at de som kvinder skal være omsorgsfulde og beskyttende overfor deres familie. For at håndtere frygten hersker der konsensus om at gøre brug af de tilbud, som stilles til rådighed i den medicinsk genetiske kontekst. Der er en udbredt kulturel forestilling, om at man kan opnå viden om sine gener og træffe beslutninger på den baggrund, og en tendens til at opfatte genetisk testning og profylaktisk kirurgi som den ansvarlige måde for kvinder at håndtere risiko. Kønnede forestillinger om kvinders og mødres udvidede ansvar, lagt oveni den medicinske genetiks muligheder, virker gennem frygten disciplinerende på kvindernes valg af testning og profylaktisk kirurgi, også selvom det har omfattende negative konsekvenser for deres egne kroppe og liv. Det stiller særlige krav til genetiske rådgivere og sundhedsvæsnets tilbud på området. ”For my children’s sake”: affective circulation of risk, responsibility and gender in BRCA genetic counselingGenetic testing is increasingly used by healthy people who are at risk for developing serious or life threatening diseases. Some instances of breast and ovarian cancer are caused by a mutation in one of the two BRCA-genes and may cause early onset of disease and premature death. Based on interviews of women who have tested positive for a BRCA mutation, and a genetic counselor this article explores the role of affective circulation of risk, responsibility and gender in the processes and choices around genetic counseling, testing and prophylaxis. The analysis shows that for women and their relatives fear is integral to the entire process of genetic testing. For women, and particularly mothers, fear is exacerbated by the widespread culteral expectation that women ought to care for and protect family members. One way to handle that fear and to meet expectations in the context of medical genetics is making use of the available measures. The notion that you can know your genes and act upon genetic knowledge is a cultural given and works as a driver for perceiving genetic counseling, testing and prophylactic surgery as the more responsible way for women and mothers to manage risk. The gendered conception of extended responsibilities of women and mothers, coupled with the promises of medical genetics, may discipline women to undergo genetic testing and surgery for the sake of family members, particularly children, regardless of any adverse consequences for their own bodies and lives