Huntington's research at leading edge of issues around genetic testing NIGEL ARMSTRONG The Guardian
Charles Sabine has covered world turmoil for NBC in Baghdad, Kosovo and tsunami-ravaged Thailand but now he is in Charlottetown to speak about turmoil that lurks close to every person — genetic turmoil within.
Sabine’s father died in 2001 of Huntington’s Disease. Sabine took a genetic test and finds that he too has Huntington’s.
A slow, degenerative death with severe dementia is all but assured for Sabine.
“It is a completely untreatable and fatal disease,” he said during an interview with The Guardian Thursday. “The symptoms are very disturbing. Once people become deeply symptomatic they lose control.”
Assisted suicide is one of many issues associated with the disease, said Sabine, a keynote speaker at the national conference of the Huntington Society of Canada underway at the Delta Prince Edward in Charlottetown.
It affects mostly Caucasians, split 50-50 among men and women. The defective gene that causes Huntington’s was one of the first such genes to be discovered and Huntington’s research is at the leading edge of medical and ethical issues around genetic testing the therapy, said Sabine.
Sabine had a stellar journalism career. He filed stories from Syria, Haiti, Rwanda, Iran and South Africa.
None of what he experienced compared to the anguish of getting the blood test for Huntington’s, he said.
“There isn’t a worse way to die. It goes on for years. It’s like cancer, Alzheimer’s and Parkinson’s all thrown in together, and worse, you are going to give it to your children.”
His daughter was tested and she does not have the affected gene.
Caregivers and loved ones suffer terribly as well, he said.
Sabine, however, has hope.
“All is not lost,” he said of his message. “This is a disease that will probably be cured or at least treated in the imminent future and there is a great deal of excitement amongst scientists because this is absolutely at the vanguard of science right now.”
The vanguard is finding ways to deal with genetic diseases. Everyone has a genetic disease, even if they don’t know it yet, said Sabine. Soon a test might show if a woman will later die from breast cancer, as an example, he said.
“There are massive moral, constitutional, political and social issues involved in all of these matters, which are: should you be tested; who has a right to that information; should employers have that information; should the government have that information, should insurance companies have that information; should you have children if you have one of these things? Huge questions that will be staring everyone in the face in 20 years. It is in everyone’s interest that we get this right with Huntington’s, every aspect of it. There are laws being passed and constitutions being changed according to what is happening with Huntington’s that will affect everyone in society.”
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Meredith from Arizona writes: I am sorry for your family, Sabine. This devastating disease affects my family as well (my dad, my sister, my aunt died from it, me, my son possibly); in fact, I participate in HD research as much as possible to help out in any way; I encourage others to participate as well, they even accept people for research who don't have the gene; do what you can to help! Good luck to you and your family!
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