Attitudes About HD Testing in India

Counseling for predictive HD tests is largely unavailable in India.
Genetic testing for Huntington's Disease is available in India but counseling for those undergoing predictive testing is not. In the absence of counseling, the authors wanted to better understand attitudes about genetic testing for an incurable disease that those at risk might encounter. They distributed questionnaires to three groups of people: doctors, unaffected HD family members of people who had tested positive (some at risk and some not at risk), and a normal control group. All were asked to imagine that they were at risk for Huntington's Disease in answering the questionnaire.

A majority of all three groups reported that they would want to be tested, with a greater majority of controls agreeing. A majority in all three groups stated that they would expect to be able to cope with a positive result. Virtually all agreed that HD should be covered by medical insurance.

Most HD family members reported that the results would be important for family members and friends. Half the doctors agreed but only a third of controls. Most doctors reported that the test results would influence their reproductive choices but most HD family members and control group members disagreed. About half of the HD family members and the doctors stated that positive results would impact other life decisions, but just over a quarter of the controls agreed. Nearly three quarters of HD family members thought that a negative test result would make them better parents but only 54 percent of controls and 38 percents of doctors agreed. 80 percent thought that they would tell their employer about a positive results but 80 percent of family members and half of the doctors would not do so.

Clearly then, individuals who are at risk and thinking about predictive testing are likely to be faced with varying perspectives about the consequences of the test from other family members, friends, and their doctors.

Marsha L. Miller, Ph.D.
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.

Aim:

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

Materials and 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.