Here is an article about someone who chose not to take a test
Young Tasmanian facing life-changing decision about Huntington's disease test
936 ABC Hobart By Fred Hooper
Posted about 7 hours ago
When Liam Dolbey was 18-years-old he made a life changing decision about his health.
Huntington's disease runs in his family, but he decided not to take a test to find out if he will also develop the condition later in his life.
It was while still studying at high school that Mr Dolbey had the difficult conversation with his parents and he learned Huntington's disease ran in this family.
"All of a sudden, I had this sort of thing that I had to think about, so at the time it was a little bit confronting," Mr Dolbey told Penny Terry on ABC Local Radio Tasmania.
Mr Dolbey said he was proud of the way his parents handled delivering the news he had the Huntington's gene and there was no ill feeling within the family.
What is Huntington's disease?
Huntington's disease is a a genetic neurodegenerative disease that affects muscle coordination
Onset of symptoms typically occurs between 30 and 50 years of age
It then leads to cognitive decline
There is a 50 per cent chance of inheriting the disease from a parent with the Huntington's gene
For information and support for people with Huntington's disease, contact the Australian Huntington's Disease Association (Tasmania) Inc.
"It's obviously not a very easy conversation to have, but they respected my right to be engaged in my own sort of life decisions from that age," he said.
Initially Mr Dolbey said he did not understand the full extent of how the disease would affect him later in life and initially, this played on his mind.
"When I first found out I was quite young and naive and I would do things like drop a plate and think 'oh, do I have the Huntington's disease already?'
"I talked about it a lot with my family about whether or not I should get tested, including my brothers who had the same thoughts going through their heads," he said.
Resources:
http://www.abc.net.au/news/2014-11-1...ngtons/5884826
http://www.scienceclarified.com/Ga-H...Disorders.html
http://singularityhub.com/2014/10/30...gtons-disease/