Do You Really Want to Know?
- Release Date 2012
- Running Time 72 minutes
- Closed Captions No
- Availability Canada, USA
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Do You Really Want to Know? is a documentary about the complex emotional, ethical and psychological issues surrounding the new frontier of predictive genetic testing. The film follows three families who have been confronted with the decision of whether or not to be tested for Huntington’s disease - a degenerative neurological illness that is akin to having ALS, Schizophrenia and Alzheimer’s - and one of the first diseases people could be accurately and conclusively tested for, before the onset of any symptoms. As scientists discover more ways to identify diseases before we know we have them, “do you really want to know?” will be a question more and more of us will face.
Do You Really Want To Know? is a documentary about the very complex emotional, ethical and psychological issues surrounding an individual’s decision whether or not to be tested for a fatal disease.
The film centres on three families all at risk for Huntington’s disease or “HD” – a degenerative neurological disease that about 3,000 Canadians currently suffer from, and that another 15,000 might carry the gene for and not know it.
Unlike some other genetic diseases, HD is not a random configuration of genes from both parents nor does it not skip generations. Instead the Huntington gene is a dominant one that must be transmitted directly from one parent to a child. In other words, if you don't have the gene, you can't get it and you can't pass it on. But, if you do have the abnormal gene, you will develop HD.
HD is a particularly cruel illness that causes mental and physical deterioration over a period of 10 to 20 years. Like Alzheimer’s, Huntington’s inevitably destroys the mind and the body, leading to what experts say is one of the worst experiences of dying. The symptoms for Huntington’s generally appear between the ages of 30 and 50 when the disease becomes a slow robber, sapping its victims of their capabilities over a span of decades. There is no treatment or cure, not even anything experimental, and no way to delay or stop its onset.
Consequently when an individual tests positive for the Huntington’s gene, they receive a death sentence, and for those who are parents, there now exists a 50-50 chance that they have already passed the gene on to their children. A flip of the coin.
I chose Huntington’s for this film not only for the inherently dramatic and clear cut result that comes from testing but also because the disease represents the one disorder for which genetic testing has been offered for the longest time to the largest number of people.
In 1986, genetic centres in the United States began to offer a linkage test for people at risk for Huntington’s that indicated whether they had an increased or decreased chance of developing the disease. With the discovery in 1993 of the gene for Huntington’s, it became possible to come up with a definitive result after testing.
Consequently, genetic counselors say the experiences of people being tested for Huntington’s has been central in understanding many of the clinical, ethical and psychological complications of predictive genetic testing. As one genetic counselor put it, “The Huntington people have been moral pioneers for the rest of us.”
There are now over 4,000 disorders with a known genetic basis and an estimated sixty percent of us will experience a disease with a genetic component to its cause, which means, “do you really want to know?” will be a question more and more of us will face.
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