Perspectives towards predictive testing in Huntington disease.
OBJECTIVE
Genetic counseling for individuals undergoing presymptomatic testing is lacking in India although testing is easily available. This has an impact on family members of Huntington's disease (HD), an autosomal dominant disease, wherein the age at onset of symptoms varies.


OBJECTIVE
We examine if attitudes differ towards presymptomatic testing for HD amongst HD family members, physicians and laypersons.


METHODS
A modified questionnaire enquiring about opinions on various personal, family, social and future health care with regards to presymptomatic testing of HD was designed. A physician explained briefly about HD and presymptomatic testing of HD and recorded responses of unaffected family members of HD (n=25) and laypersons (n=50). Medical doctors (n=50) answered the questionnaire based on their knowledge of HD.


RESULTS
HD family members, Medical doctors and laypersons were similar in their opinion to undergo the testing. Majority (60%) of HD family members did not wish to communicate test results with their friends when compared to the other two groups. Medical doctors and HD family members were more concerned about certainty of developing disease when the test results are positive. Majority (80%) of Medical doctors and less than half in the other groups felt that their decision to have a child would strongly depend on test results. Large proportion (80%) of HD family members did not wish to report their test results to their employers.


CONCLUSIONS
Individuals with knowledge about HD and the test differ in their decision of sharing test results and reproductive choices.
Nagaraja
S M
SM
Department of Neurology, National Institute of Mental Health and Neurosciences, Hosur Road, Bangalore - 560 029, India.
Jain
Sanjeev
S
Muthane
Uday B
UB
D000328:Adult; D005260:Female; D005817:Genetic Counseling; D006801:Humans; D006816:Huntington Disease / Q000175:diagnosis* / Q000235:genetics*; D007194:India; D008297:Male; D008875:Middle Aged; D011237:Predictive Value of Tests; D011795:Surveys and Questionnaires