
Quality of Life and Human Difference
Genetic Testing, Health Care, and Disability
Erik Nord
Publisher: Cambridge University Press
Print Publication Year: 2005
Online Publication Date:December 2009
Online ISBN:9780511614590
Hardback ISBN:9780521832014
Paperback ISBN:9780521539715
Chapter DOI: http://dx.doi.org/10.1017/CBO9780511614590.006
Subjects: Political philosophy, Pathology and Laboratory Science
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INTRODUCTION
In cost-utility analysis of health interventions, and in burden-of-disease measurement, health problems of different degrees of severity are assigned numerical scores on a scale from zero to unity. The scores are used to weight life years in calculations of quality-adjusted life years (QALYs) and disability-adjusted life years (DALYs). The scores are controversial for a number of reasons. One is that they may be seen as a devaluation of the lives of people with chronic illness or disability. While this is not necessarily the intention of the constructors and advocates of QALYs and DALYs, it is certainly the way in which people with chronic illness or disability tend to perceive these approaches (Dahl, 1992).
I believe some of the controversy over health state scores could be avoided if those who develop and use them could be both more clear and more restrictive about what the scores are supposed to mean. More specifically, I think there is a need to distinguish between the worth of a person with a given problem, the well-being associated with that problem, and the desirability of avoiding or getting rid of the problem. These are three separate issues. It is a serious mistake to think that they can be measured in the same way or expressed in one single index.
I discuss each of these concepts in the following. Then I explain a little more about QALYs and DALYs and show how the advocates of these measures have failed to clarify their meaning in the past.
pp. i-vi
pp. vii-viii
pp. ix-x
pp. xi-xii
pp. 1-26
1 - Assessing Quality of Life: Clinical versus Health Policy Uses: Read PDF
pp. 27-42
2 - Predicting Genetic Disability while Commodifying Health: Read PDF
pp. 43-66
3 - Preventing Genetically Transmitted Disabilities while Respecting Persons with Disabilities: Read PDF
pp. 67-100
4 - Disability, Ideology, and Quality of Life: A Bias in Biomedical Ethics: Read PDF
pp. 101-124
5 - Values for Health States in QALYs and DALYs: Desirability versus Well-Being and Worth: Read PDF
pp. 125-141
6 - Preventing the Existence of People with Disabilities: Read PDF
pp. 142-171
7 - Where Is the Sin in Synecdoche? Prenatal Testing and the Parent-Child Relationship: Read PDF
pp. 172-216
8 - The Social Context of Individual Choice: Read PDF
pp. 217-236
9 - Disability and Health Systems Assessment: Read PDF
pp. 237-266
pp. 267-273