Skip to content

The Burden of Knowing

At risk for Huntington's disease, a student filmmaker documents the conundrum of genetic testing.

Courtesy Nate Powers

MAKING THE RIGHT DECISION gets decidedly more difficult when you have to keep rethinking what's right. But the process can make for a deeply felt and nuanced documentary, such as the one sophomore Kristen Powers, 20 (left), has made about her family's struggles with Huntington's disease.

Twitch is a personal story that's meant to raise awareness, partly about Huntington's as a research cause and partly about the traumatic choices patients must make. The disease is a degenerative brain disorder with a ferocious cascade of symptoms, including progressive cognitive impairment and loss of bodily control, ultimately leading to death. If a parent has the illness, there's a 50 percent chance of a child getting it. Those odds—plus the fact that symptoms don't usually appear before people are in their 30s or 40s—pose a complex set of decisions about testing and diagnosis and what it can mean for individuals and their families.

Powers, whose mother died of Huntington's in 2011, chose genetic testing at 18, when she was a high school senior in North Carolina. A tangled family history meant her mother's diagnosis in 2003 was unanticipated; Powers went roughly seven years before knowing whether she had inherited the condition. The documentary tracks her through testing and the result. (Spoiler alert: Stanford offers the outcome at the end of this story, since the film is without a screening schedule at press time.)

Research progress on Huntington's might aid the investigations of other genetic and neurological diseases, and Powers, a communications major, is hoping to lessen some of the stigma around the debilitating disease. Her efforts are also rooted in more than her own future: Her at-risk brother and half-brother have yet to be tested.

Powers has become more aware of the chaotic reactions surrounding Huntington's. After speaking to people making suicide plans in the event of testing positive and young adults avoiding diagnosis because it could reveal the fate of an untested and asymptomatic parent, she's not as unhesistant an advocate for testing as she used to be.

Powers and her parents
Courtesy Edward Powers
EARLY DAYS: Powers with her parents in 1994. Her mother was not diagnosed until 2003.

"Most families . . . their grandparents have already died of it or have it," says Powers, "or they have an aunt or uncle who's currently going through it; and then a parent gets it; then their siblings get it. I think it's such an overwhelming, all-encompassing disease that people just don't want to add in the burden of knowing that they have it.

"There also seem to be a lot of pacts that happen between family members. . . . Siblings will decide that they don't want to create survivor's guilt within each other or to add to the drama that their family is already going through."

The decisions remain clearer to Powers when the issue is children. "I definitely want people to get tested if that means they're not going to pass it on to the next generation." (Powers didn't inherit the disease. She tested negative.)

More from Stanford

Comments (0)

  • Be the first one to add a comment. You must log in to comment.


Your Rating
Average Rating



Be the first one to tag this!