Article

What is in a cause? Exploring the relationship between genetic cause and felt stigma.

Center for Bioethics, University of Pennsylvania, 3401 Market Street, Philadelphia, PA 19104, USA.
Genetics in Medicine (impact factor: 4.76). 02/2006; 8(1):33-42. DOI:10.109701.gim.0000195894.67756.8b pp.33-42
Source: PubMed

ABSTRACT Concern over stigma as a consequence of genetic testing has grown in response to the recent increase in genetic research and testing resulting from the Human Genome Project. However, whether a genetic or hereditary basis necessarily confers a stigma to a condition remains unexamined.
We performed a qualitative interview study with 86 individuals with one of four conditions: deafness or hearing loss, breast cancer, sickle cell disease, and cystic fibrosis. The first two groups were divided approximately between people who ascribed their conditions to a genetic or hereditary cause and those who did not.
Respondents interpreted genetic or hereditary causes and nongenetic causes in a variety of ways. Subjects with breast cancer reported the most consistently negative interpretation of genetic cause. This response concerned future ill health, not an enduring sense of stigma. Deaf and hard of hearing subjects provided the most consistently positive comments about a genetic or hereditary basis to their condition, casting familial hearing loss as a vital component of group and individual identity. Respondents with sickle cell disease and cystic fibrosis offered similar and positive interpretations of the genetic cause of their condition insofar as it meant their conditions were not contagious.
Although some subjects report feeling stigmatized as a result of their condition, this stigmatization is not uniformly associated with the condition's cause, genetic or otherwise. Instead, stigma emerges from a variety of sources in the context of the lived experience of a particular condition.

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Keywords

breast cancer
 
condition insofar
 
conditions
 
enduring sense
 
familial hearing loss
 
future ill health
 
genetic cause
 
genetic research
 
genetic testing
 
hearing subjects
 
hereditary causes
 
Human Genome Project
 
lived experience
 
particular condition
 
positive interpretations
 
qualitative interview study
 
recent increase
 
sickle cell disease
 
subjects report feeling stigmatized
 
vital component
 

Pamela Sankar