This documentary follows 18-year-old Kristen Powers as she undergoes the process of genetic testing for Huntington’s Disease. The documentary premiered at Stanford University on February 21, 2014. More information about the film and its screening schedule can be found at www.twitchdocumentary.com.
In the documentary Twitch, filmmaker Kristen Powers tells the story of her own journey with Huntington’s Disease and her decision to get tested for the HD gene. The documentary walks audiences step-by-step through the genetic testing process, starting with Kristen sharing her family’s history with HD and ending with her receiving the test results that will reveal whether or not she carries the gene for the disease that claimed her mother’s life at the age of 45.
The film, which has a run time of slightly under 45 minutes, contains a series of interviews with Kristen’s friends and family members, as well as a series of video diary entries from Kristen herself. These vignettes provide insight into some of the emotions experienced by individuals and families affected by HD. Twitch also contains many photographs and home videos of Kristen’s mother, Nicola, that provide viewers with a glimpse into her life before and after being diagnosed with HD. The footage reveals Nicola’s awkward gait, one of the first signs that led the family to realize something was wrong, and includes scenes from the nursing home where she spent her final days.
In addition to sharing the Powers family’s personal HD story, Twitch also features interviews with several others with family histories of HD, and is careful to provide examples of at-risk individuals who, like Kristen, have chosen to get tested alongside the stories of those who have chosen to refrain from testing. The documentary makes it clear that the decision to undergo genetic testing is a deeply personal choice, and that an at-risk individual’s autonomy and decision should be respected. Twitch also contains an interview with, and a look into the life of, an individual who has been diagnosed with HD, thereby providing audiences with an opportunity to see what it means to be symptomatic.
The documentary also does a fine job of maintaining medical accuracy throughout. Interviews with several medical professionals, including a neuroscientist who walks viewers through a series of graphics that discuss the science behind HD inheritance and the huntingtin protein, are present throughout the film and are an accurate depiction of our current understanding of HD.
The one thing that viewers should be aware of when watching the film is that Kristen’s genetic testing process was accelerated for the purposes of the documentary. Those who watch the film may notice that the time between her appointments seems to go by fairly quickly, so it is important to note that while specific procedures vary between testing centers, there can be a waiting period of several weeks in between pre-testing appointments. Other than this, however, Twitch does a good job of providing its viewers with a look into what it means to be a member of a HD family, and what the process of genetic testing is like. The documentary is factually accurate, and doesn’t make any exaggerated claims about HD.
Disclosure: Kristen Powers is a Stanford University student and a HOPES student researcher. However, Twitch is a completely independent project of Kristen’s that is not affiliated with HOPES, and Kristen played no role in the writing of this article.
R. Reddy 2014