Stories

The stories in this section 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: http://www.huntingtonsociety.ca/english/uploads/Perspectives_Book.pdf.

“Stories are a vital part of life. They allow us to convey our personal experiences to others and, at the same time, they help us to make sense of our experiences.”

“The decision about whether or not to undergo predictive testing is not easy. For some, the test provides desired information about the future. For others, such information seems unnecessary or undesirable. It is, in either case, a very personal decision.

It was for many years impossible for persons with a family history of Huntingon disease (HD) to know in advance if they would develop the disease. With the 1983 discovery of markers linked to the gene causing HD, a presymptomatic test was developed. In 1986, centres in Canada, the U.S. and U.K. began to offer this test. With the 1993 discovery of the genetic mutation causing HD, a “direct” test was developed. This test permits persons at risk for HD to learn, with near 100% certainty, whether or not they will develop the disease later in life. The same test may also be used to confirm a diagnosis of HD in persons who are already showing symptoms. Thus far, the majority of persons at risk for HD, have decided not to proceed with the test. This decision is an equally valid, thoughtful and courageous decision.

The personal accounts in this section offer a range of perspectives on the experience of predictive testing. Some are from people who are considering whether or not they wish to have the genetic test. Other stories are from individuals who are in the process of undergoing testing or reflecting upon what the experience was like for them. Although identifying details have been removed, each person is the author of their own story in that they are telling, in their own words and from their own point of view, what the experience was like for them. Family members may have different perspectives on the experience and, though their stories do not appear here, it is important to acknowledge that the process of predictive testing has many significant implications for the spouse/partners, children, siblings, parents and other family of the person being tested.”