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Logo of nihpaAbout Author manuscriptsSubmit a manuscriptHHS Public Access; Author Manuscript; Accepted for publication in peer reviewed journal;
 
From:
Am J Med Genet A. Author manuscript; available in PMC 2008 October 28.
Published in final edited form as:
Am J Med Genet A. 2008 August 15; 146A(16): 2070–2077.
doi: 10.1002/ajmg.a.32422

Table III

Rationale for Not Pursing Genetic Testing

Reasons for Choosing Not to be TestedEntire SampleIndividuals who never pursued testingIndividuals who eventually pursued testingIndividuals at U.S. Study SitesIndividuals at Canadian Study Sites
I cannot “undo” the knowledge once I am tested2.8 [700]2.8 [660]2.5 [40]2.8 [609]3.0 [91]
I prefer to live with the uncertainty of not knowing my gene status2.8 [707]2.8 [665]2.2 [42]2.7 [615]2.8 [92]
I am comfortable with being at risk2.8 [699]2.8 [660]2.3 [39]2.7 [608]2.9 [91]
There is no effective cure or treatment for Huntington disease at this time2.7 [706]2.8 [665]2.1 [41]2.7 [614]2.8 [92]
I do not believe testing will give me increased control over my life2.6 [698]2.7 [658]2.0 [40]2.6 [607]2.6 [91]
If my risk goes up, so does the risk of my children2.6 [683]2.6 [644]2.6 [39]2.6 [593]2.4 [90]
I would rather wait until there is a promising treatment2.5 [697]2.5 [658]2.0 [39]2.5 [605]2.5 [92]
I am concerned that I may lose my health insurance2.5 [698]2.5 [658]3.1 [40]2.6 [607]2.0 [91]
I already have the children I planned to have2.3 [686]2.3 [648]2.3 [38]2.3 [594]2.6 [92]
I would be unable to cope with knowing I carried the gene2.2 [702]2.3 [661]2.0 [41]2.2 [610]2.3 [92]
I am concerned about how people will treat me if they know I have the Huntington disease gene1.9 [700]1.9 [661]2.5 [39]1.9 [609]1.8 [91]
I do not have enough information about testing to make a decision1.6 [704]1.6 [661]1.5 [43]1.6 [612]1.5 [92]
My partner/relatives do not think it is a good idea for me1.6 [697]1.6 [658]1.6 [39]1.6 [607]1.4 [90]
I think I may already be affected1.6 [700]1.5 [660]1.9 [40]1.6 [609]1.5 [91]
The financial costs of testing are too high1.5 [699]1.5 [659]1.6 [40]1.6 [608]1.2 [91]
The testing process is too burdensome1.1 [705]1.1 [664]1.0 [41]1.1 [613]1.1 [92]
The testing process takes a long time1.1 [707]1.1 [664]1.0 [43]1.1 [615]1.1 [92]

Notes: Sample sizes are in square brackets. All question are framed to ask how important each factor is for an individual not having pursued testing prior to the current visit; all variables are measured on a 5 point scale [ranging from 0 to 4] from “Extremely Unimportant” to “Extremely Important”

p<0.05 for comparison with the other group [column to the left]
p<0.01 for comparison with the other group [column to the left]