Years of life lost due to genetic disease

TLDR: A description of the traditional calculation and the reformulation, first for congenital diseases and then for diseases with delayed onset are presented, and a discussion follows of how different ages in a person's life should be weighted and the value considerations implicit in whatever decision one makes.

Abstract: ‘Years of life lost’ is a quantity widely used in biostatistics to assess the importance of a cause of death. In its traditional meaning the phrase refers to the number of additional years that the average person in a specified reference group could expect to live if a given cause of death were eliminated. Recently the idea has been reformulated and applied to genetic conditions. The present paper begins with a description of the traditional calculation and goes on to present the reformulation, first for congenital diseases and then for diseases with delayed onset. A discussion follows of how different ages in a person's life should be weighted and the value considerations implicit in whatever decision one makes. The next topic is the way one eliminates a genetic disease, the concrete procedures used to do it, followed by morbidity due to genetic disease and the calculation of years of life lost due to nongenetic risk factors. The paper concludes with next steps in assessing the impact of genetic disease.