Knowledge, responsibility, decision making and ignorance:

Abstract

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”.