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”
Keywords No keywords specified (fix it)
Categories (categorize this paper)
Edit this record
Mark as duplicate
Export citation
Find it on Scholar
Request removal from index
Revision history

Download options

PhilArchive copy

Upload a copy of this paper     Check publisher's policy     Papers currently archived: 65,593
External links

Setup an account with your affiliations in order to access resources via your University's proxy server
Configure custom proxy (use this if your affiliation does not provide a proxy)
Through your library

References found in this work BETA

The Ethics of Authenticity.Charles Taylor - 1992 - Harvard University Press.
Personal Trajectories of Participation Across Contexts of Social Practice.Ole Dreier - 1999 - Outlines. Critical Practice Studies 1 (1):5-32.

Add more references

Citations of this work BETA

No citations found.

Add more citations

Similar books and articles

Studying Genetic Risk in the Conduct of Everyday Life.Lotte Huniche - 2003 - Outlines. Critical Practice Studies 5 (1):47-54.
Toward a Revaluation of Ignorance.Cynthia Townley - 2006 - Hypatia 21 (3):37 - 55.
What Kind of Ignorance Excuses? Two Neglected Issues.Rik Peels - 2014 - Philosophical Quarterly 64 (256):478-496.
What is Ignorance?Rik Peels - 2010 - Philosophia 38 (1):57-67.
On Ignorance: A Reply to Peels.Pierre LeMorvan - 2011 - Philosophia 39 (2):335-344.
In Praise of Ignorance.L. L. Farrar - 2003 - Critical Review: A Journal of Politics and Society 15 (3-4):339-346.
Pleading Ignorance in Response to Experiential Primitivism.Raamy Majeed - 2013 - Philosophical Studies 163 (1):251-269.


Added to PP index

Total views
6 ( #1,113,415 of 2,462,097 )

Recent downloads (6 months)
1 ( #448,768 of 2,462,097 )

How can I increase my downloads?


My notes