Plot
The main subjects of the film are Jeff Carroll, a US Army Veteran and Huntington's disease researcher from Washington; Dr. John Roder, a renowned cancer specialist at the Samuel Lunenfeld Research Institute at Mount Sinai Hospital, Toronto; Theresa Monahan of Ohio, who was among the first Americans to undergo predictive testing for Huntington's disease in 1988, and Dr. Michael R. Hayden, who is the director of the Centre for Molecular Medicine and Therapeutics at the University of British Columbia, and the world's most-cited researcher with regard to Huntington's disease. [4]
Jeff Carroll's story involves learning about his family's genetic history after he was already married and considering having children. He underwent testing at Dr. Michael Hayden's Centre for Molecular Medicine and Therapeutics and learned that he had inherited the genetic abnormality that will cause him to develop Huntington's disease later in life. Subsequent to his diagnosis, he joined Dr. Hayden's research team and obtained a Ph.D for his research on Huntington's disease. Meanwhile, he and his wife had decided that it would be unethical to conceive children who might inherit the disease from him, so they used preimplantation genetic diagnosis to ensure their children were born free of the genetic abnormality. He is now an advocate and frequent public speaker on Huntington's disease [5] and encourages all at-risk individuals to be tested and to participate in clinical trials so that research into treatment can progress as quickly as possible.
Dr. John Roder and his wife Mary-Lou were already parents when Dr. Roder underwent testing for Huntington's disease in the 1990s and learned that he carried the gene for Huntington's. Roughly ten years later, in his 50s, Dr. Roder began showing symptoms of the disease, including severe depression and Huntington's chorea, a muscle control and movement disorder typical of the disease. Despite his decline in health, he continued working with the goal of retiring at age 65 as someone with normal health would. When the Roders' two adult children underwent testing, they were both negative for the Huntington's gene, though it was earlier discovered that son Nathan had schizophrenia. Subsequent to his and Nathan's diagnoses, Dr. Roder changed the focus of his research from cancer and metabolism to schizophrenia and brain diseases. [6]
Theresa Monahan is from a large family with a history of Huntington's disease. Her mother and eldest brother died of the disease, but her surviving siblings, like most people at risk for Huntington's, have declined to be tested [7] over concern that a positive diagnosis could ruin their quality of life long before symptoms affected their health. Without telling her family, Theresa proceeded with testing as part of a landmark study at the Indiana University in 1988, but declined to read her results until her daughter got married and she became concerned about the possibility of passing the disease down to her potential grandchildren. Her results showed she was negative for the HD gene, meaning she would not get the disease. As is typical of people of at-risk people who test negative for HD, she reports feeling some survivor guilt over her results. [8]
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