If there was a 50-percent chance of something terrible happening to you that you couldn’t do anything about, and there was a way to find out if it would happen or not, would you want to know the outcome?
Interestingly, 96 percent of Americans and 75 percent of Canadians would choose not to know in the case of Huntington’s disease. It’s an incurable, fatal neurodegenerative genetic disorder that afflicts about one in every 10,000 Canadians. Children with parents who have the disease have a 50-percent chance of inheriting it. Those at risk can be tested to find out if they will develop its devastating symptoms, which are akin to schizophrenia, amyotrophic lateral sclerosis, and Alzheimer’s occurring simultaneously, often in mid-adulthood. But the underlying dilemma they face is a universal one: can you handle knowing your fate?
The documentary Do You Really Want to Know? by local director John Zaritsky tackles this issue.
“It’s…an agonizing question that increasingly more and more of us will face now that there’s over 2,000 genes that have now been discovered that you can be tested for,” Zaritsky told the Georgia Straight by phone. Zaritsky has made numerous films about medical issues and dying, including Leave Them Laughing and The Suicide Tourist. Because of the groundbreaking genetic research being done on Huntington’s, Zaritsky regards those facing the prospect of the disease as “the moral pioneers for the rest of us.”
The decision to get tested, which has been an option since 1993, can be a life-changing one. As Zaritsky points out, once you get tested, “you can’t go back to not knowing.” In the documentary, numerous interviewees talk about why they won’t get tested, ranging from fear of how it will change their outlook on life to feeling unable to emotionally handle the results.
Thirty-four-year-old former Vancouverite and documentary interviewee Jeff Carroll did get tested. But he transformed his life after testing positive.
“Honestly, my life is probably a lot more interesting because of HD,” he said by phone from Washington state. “I mean, I wish it didn’t exist, but I’m kind of a high-school drop-out kid from nowhere who got motivated by something and got interested enough in it to be successful at a level that I probably wouldn’t have done with anything else in my life. It’s also brought a lot of clarity to my personal life.”
Carroll, a former researcher at the UBC Centre for Huntington Disease (where renowned genetic researcher Dr. Michael Hayden, also featured in the documentary, has been a pioneer in predictive testing for Huntington’s), is now a Western Washington University behavioural neuroscience program assistant professor. Carroll and his wife Megan were the first Canadian couple to undergo preimplantation genetic diagnosis to screen out embryos with the gene, thereby stopping inheritance by their children. The couple subsequently devoted themselves to raising awareness about the procedure.
Individuals who get tested can also become part of the solution as well.
“There are trials where they basically follow people who are tested, either positive or negative, and see what effect the mutation has on everything: their brain shape and their blood chemistry and everything else,” Carroll said. “And those kinds of studies are really valuable, because when we do have a drug, we’ll be able to design much better trials for it if we understand what happens to people when they carry this mutation.”
Carroll acknowledged that while he has met people for whom knowing caused much agony and distress, he also believes that sometimes the intensity of the issue can be unnecessarily magnified.
“I think some people kind of infuse it with more power than it has...by saying, ‘Oh, it’s not my fault I have this thing,’ or they blame their problems on their agony about whether to get tested or not, and I think that’s a lot of transference. I think people have their own problems and they project it on to their situation with HD a lot of the time.”
Carroll pointed out that there’s a pragmatic aspect to getting tested as well. “You have to plan your insurance, and your retirement, and your career plans based on reality, not on what you hope is going to happen. And I think that’s really powerful, and you can’t do anything about it in the sense you can’t change your genetic status, but you can have a sense of ownership over how you react to it.”
Zaritsky said he hopes his film will raise awareness and attract funding for research, and that he did his best to present a balanced perspective.
“Personally,” Zaritsky said, “I hope Jeff Carroll persuades a lot of people in the Huntington’s community to get tested.”
The DOXA Documentary Film Festival presents Do You Really Want to Know? at 6:30 p.m. on Sunday (May 6) at the Vancity Theatre. An edited one-hour version will be broadcast on the Knowledge Network on a date still to be determined.
Watch the trailer for Do You Really Want to Know?
You can follow Craig Takeuchi on Twitter at twitter.com/cinecraig.