“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 (HD) – a degenerative neurological illness that is akin to having ALS, Schizophrenia and Alzheimer’s all at the same time. Once it strikes, HD slowly destroys the mind and the body in what experts say is one of the worst ways to die. Not only is there no cure, there is no treatment – not even experimental treatments.
Consequently, when individuals test positive for the Huntington gene, they are effectively receiving a death sentence – the terrible news that a genetic time bomb will someday lead to an awful end.
Through three emotional, inspiring and surprising stories, viewers will learn how different people have responded to their results – either hearing the worst news imaginable, or the best news of their life. For some people, learning that they do not have the gene causes a tremendous sense of guilt over being spared while other family members are not so fortunate. Meanwhile, others find the prospect of facing a terminal illness to be a transformative experience that motivates and focuses them. In all three stories the subject will describe the experience of being tested, and the ramifications of that choice on their relationships to partners, children, families and friends, and how they now feel about that decision after the fact.
Huntington’s Disease was chosen as the subject of the film not only for the dramatic and clear cut result that comes from testing, but also because it is one of the first diseases for which people could be accurately and conclusively tested, long before the onset of any symptoms. Unlike other genetic diseases, HD is not a random configuration of genes from both parents. Instead the Huntington gene is a dominant one that is transmitted directly from parent to child. 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 gene, you will develop HD.
Since there are now over 4,000 disorders with a known genetic basis, an estimated sixty percent of the population will experience a disease with a genetic component. As more and more genetic tests are developed, “Do You Really Want To Know?” will be a question more and more of us will face – making Huntington’s patients the moral pioneers for the rest of us.