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Review: Do you really want to know?

‘Do you really want to know?’ is a documentary by John Zaritsky about genetic testing for Huntington’s disease. It follows people who have each gone through the genetic testing process. The documentary gives you an open look into the impact Huntington’s has had on these people’s lives and what the test, negative or positive, has meant for them.

As a whole it is a beautifully told series of highly personal stories which provides a human face to the idea of Huntington’s disease. If you are at risk and considering being tested, or if you want to introduce another person to Huntington’s disease, then this is a very good documentary to watch.

However, one aspect of the documentary did feel a little off to me personally. The first fifteen minutes or so are a bit misleading in terms of the overall tone of the documentary. In this opening part of the video we’re confronted by these very sad introductory stories, combined with intentionally sad music, and blue/grey filters which really try to hammer in the idea that you should feel upset with what you’re watching.

That kind of story telling can be very distancing. It’s a sign early on that something is going to be upsetting and gives people the choice to either engage or to shut down emotionally, and I think that really goes against what the documentary as a whole is trying to do. Slightly further along in the documentary you’ll find that the tone is guided primarily by the stories these individuals and families are telling, which feels much more natural and inviting after you’ve passed that initial part of the story.

‘Do you really want to know?’ deals with the myriad of different aspects that come not only with having the genetic test, but also being part of a family with Huntington’s disease. It does an incredible job of establishing what these people have dealt with in the past, what they continue to deal with, and what they expect from their futures.

So often you will see stories like these which focus on the determination and fearlessness of an at risk group, and while this documentary does show that, it also shows you the rest of the experience: The guilt, and the fear, and the anxiety that comes with a life spent waiting for the worst. It reminds us all that being strong and being afraid aren’t mutually exclusive.

In a very honest way this documentary tells the stories of people with Huntington’s disease, and I would absolutely recommend that if you have the chance to watch it that you do.


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About the Author

Blaise is a science writer for the Brain Health Research Centre at the University of Otago, and a certified member of the Australasian Medical Writers Association. She has studied psychology and neuroscience, and her aim is to raise awareness for neurological and psychological illnesses. Blaise is driven by a desire to make scientific information accessible and understandable to both the general public and to those impacted by these illnesses.