TORONTO, Jan. 15, 2013 /CNW/ - The personal and psychological complexities of predictive genetic testing - and the journey of families struggling to cope - are explored in the award-winning documentary Do You Really Want to Know?, premiering on TVO Wednesday February 6 at 9 pm. Directed by Oscar-winning, Ontario-born director John Zaritsky (Just Another Missing Kid), the film follows three families confronted with the difficult, life-altering decision of whether or not to be tested for Huntington's disease.
An inherited and fatal degenerative neurological illness, Huntington's is one of the first diseases for which people can be conclusively tested before the onset of any symptoms. In those carrying the gene mutation, there is a 100 per cent chance they will develop symptoms, and a 50 per cent chance they will pass the gene on to their children. The knowledge that a person has - or doesn't have - the gene can either lift a burden, or create a bigger one.
Dr. John Roder, a renowned neuroscientist at Toronto's Mount Sinai Hospital, watched his father and grandfather succumb to Huntington's while in their 50s. Aware of how the lottery of Huntington's could affect his future, he and his high-school sweetheart accepted the risk, married and began a life together. After the Huntington's gene was discovered in 1993, he decided to be tested. Now aged 62 and living with advanced symptoms, he continues to work full-time conducting groundbreaking research on disorders of the brain.
"I take things day by day. Having joined Mount Sinai's Samuel Lunenfeld Research Institute since its inception in 1985, I'd like to keep working until I'm at least 65," Dr. Roder says. "As a scientist, I feel driven to help discover new treatments for devastating neurological disorders that are so misunderstood but exact such a painful personal and economic toll on our society. This film captures the life-changing experience of undergoing genetic testing for Huntington's, and why greater research is so critical for working toward a cure for this disease one day."
For former Vancouverite Jeff Carroll, Huntington's disease struck his mother and grandmother, and was hidden from him until his 20s. Angry and wondering if his future could ever include kids, Jeff decided he couldn't live with the fear of "maybe." Ohio native Theresa Monahan, one of the first people ever to be tested for Huntington's in 1986, had at least four generations of her family affected by the disease. She kept her test results a secret from her six siblings as she worried how the knowledge of her result might impact their lives and their decision to be tested.
"TVO is proud to present Do You Really Want to Know? because there are important stories to be told about the journey families go through with a decision like this," says Jane Jankovic, TVO's commissioning editor. "In the film, we learn that 75% of Canadians who are at risk for Huntington's won't get tested. Whether it's for Huntington's or other genetic diseases, we hope this documentary offers an opportunity for Ontarians struggling with a similar decision to inform their own choice."
Do You Really Want to Know? will be rebroadcast Wednesday February 6 at midnight, Thursday February 7 at 10 pm, Sunday February 10 at 11 pm and Tuesday February 12 at 9 pm.
TVO champions documentaries on air and through Doc Studio, an online showcase for documentary filmmakers and their work and a learning community supporting point-of-view filmmaking. A leader in Canadian point-of-view documentaries, TVO devotes more than half of its primetime schedule to documentaries and commissions 8 to 10 new point-of-view documentary films every year.
TVO is Ontario's public educational media organization and a trusted source of interactive educational content that informs, inspires and stimulates curiosity and thought. TVO's vision is to empower people to be engaged citizens of Ontario through educational media. TVO is funded primarily by the Province of Ontario and is a registered charity supported by sponsors and thousands of donors. For more information, visit tvo.org.
Where to Find TVO
| On air:
Over-the-air (may vary in some areas)
Cable channel 2 (may vary in some areas)
Bell TV channel 209
TVO HD on Bell Fibe TV channel 1209
Rogers TVO HD channel 580
Shaw Direct channel 353
For further information:
Communications and PR Specialist, TVO
416.484.2600 x 2305
Communications Specialist, Samuel Lunenfeld Research Institute, Mount Sinai Hospital
416.586.4800 ext. 2046