To Test or Not to Test

Oct 2, 2014

If you inherited a deadly, incurable disease, would you want to know?

That’s the question Kristen Powers had to ask herself at 12 years old after her mother was diagnosed with Huntington’s Disease, a hereditary, degenerative, and terminal brain disease.

Kristen, like all children of those afflicted with Huntington’s, has a 50/50 chance of inheriting it. When she turned 18, she had the option to discover whether she would develop the disease later in life. She decided to be genetically tested for Huntington’s and documented the process in her film “Twitch,” which is playing at the University of Iowa Thursday night.

"I knew it was right for me to test because every single day I was thinking about my at-risk status. And what was really overwhelming for me was thinking about if I had the disease or if I didn't. [...] For me the burden of not knowing had become greater than knowing. Even it were the undesirable result of the disease, I feel like that would be more of a comfort than this constant battle between these two paths."

Dr. Peg Nopoulos says Kristen is in the minority. Most children of those with Huntington’s choose not to know whether they’ll inherit the disease.

"We don't have a mechanism where we can change their fate. We can manage symptoms, but we can't change the course of the disease. [...] If we can't change that, then it's information they may not want to know."

In this River to River interview, host Ben Kieffer talks with Powers and Nopoulos about the physical particularities and the emotional turmoil of Huntington’s. Jamie Parish, a woman who has gene-tested positive for Huntington's, also joins the conversation. The trailer for Twitch can be found here, and the event information for the free screening can be found here.