Do I Want To Know?

“The stories that follow are written from the perspective of people who are considering having predictive testing. As some of the stories suggest, predictive testing is not for everyone. Although it is sometimes assumed that the majority of individuals at risk for HD have had predictive testing, it is only about 10% of persons at risk who have actually decided to have the test. It is also helpful to recognize, that there is no time limit on the decision about whether or not to have predictive testing. The experience of being at risk for HD may change throughout someone’s lifetime. Consequently, it sometimes happens that people who do not initially want to have predictive testing later change their minds. The openness of the decision is also reflected in how predictive testing is offered. Genetic testing centres provide pre-test counselling and support to ensure that the decision is well-informed and appropriate for the person considering having the test. Further, it is always possible to stop the process and not obtain the test results if the person decides that they would rather not know.”

These stories are taken directly from a collection that was compiled and edited by Susan M Cox, PhD, in conjunction with the Huntington Society of Canada. The stories come from different sources including: a series of in-depth research interviews conducted by Dr. Cox with persons who proceeded with predictive testing in British Columbia in the mid 1990’s,  as well as those that were submitted in response to requests for personal perspectives on genetic testing from chapters of the Huntington Society of Canada. The material that is used and quoted in this section is taken verbatim from the collection, a complete version of which can be found here:

No need to know

“I never considered predictive testing was for myself or my family. Yes, Huntington’s is alive and well in my family history — that is, my grandfather, two great-aunts, one great-uncle, my father and my aunt — but fortunately the debilitating effects of the disease do not appear until approximately age 55 or later.”

I’d rather wait

“Mom had HD. She passed away in 1985, at age 69. I knew something was wrong with her in her 40’s. Her mother passed away earlier from HD. I didn’t become aware it could be passed on to me until the late 1960’s.”

Being a coward has nothing to do with this

“This is about my experiences living with Huntington’s disease and why I do not want predictive testing. My father had Huntington’s disease. I figure he started showing signs when I was 11 years old. He was diagnosed 10 years ago and has been dead for four years.”

Now I find myself wanting to know

“I got married fairly young, around 20 years. At that time no testing was available. My husband-to-be was completely informed on Huntington’s disease, all that we knew at that time. There were no secrets. He could see all the full effects in my mother. At that time my mother was quite advanced and exhibited all the symptoms of HD.”