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'I don't want test to tell me if I have terminal illness'

Enter here to explore ethical issues and discuss the meaning and source of morality.
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Alan H
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'I don't want test to tell me if I have terminal illness'

#1 Post by Alan H » March 29th, 2008, 8:31 am

In today's Scotsman:
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'I don't want test to tell me if I have terminal illness' - The Scotsman
http://thescotsman.scotsman.com/health? ... id=3927153
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'I don't want test to tell me if I have terminal illness'

By LYNDSAY MOSS
WHEN Fiona Gailley recently turned 18 she faced a difficult decision – one which could change the way she lived the rest of her life.
With a family history of Huntington's disease, the teenager had the choice of having a test which had a 50 per cent chance of telling her she would also go on to develop the condition.

Miss Gailley chose not to have the test, preferring – for now – to carry on with her life as normally as possible, training to become a doctor and planning for her wedding.

Her case highlights the difficult decisions made by many young Scots every year.

Now the Scottish Huntington's Association (SHA) has just received almost £300,000 from the Big Lottery Fund to support projects helping people through genetic testing and at later stages of the disease.

It follows a previous grant to help young people living with Huntington's in their family.

Only around 15 per cent of young people choose to take the genetic test which may tell them they will become terminally ill.

For many, it may seem strange that someone would refuse a test which could tell them they do not carry the genetic fault which causes Huntington's.

But Ms Gailley said that for her, the chance of being told she was carrying the gene was too high. "I don't want to take the risk of finding out I do have the gene," she said. "It is 50-50. That is too high. I don't want a test that has those odds."

Miss Gailley's father, Tom, started suffering Huntington's symptoms at 38.

His mother had the disease, and two of his three brothers suffer from it.

Ms Gailley said the illness gradually changed her father: "He started to have violent mood swings. It has changed his personality. That went on for three years before the symptoms started to get worse.

"Now he also has bad movement. He find it hard to walk. His speech is also bad and he has poor concentration. His memory is not so good and he is also quite clumsy."

Despite this, Mr Gailley is still able to continue his office job and the family try to live as normal a life as possible.

Ms Gailley and her 15-year-old sister, Jill, have been receiving support from the SHA. The medical student at Glasgow University said the charity had been very supportive of the family.

Miss Gailley, who recently got engaged to boyfriend Scott, said she might change her mind in future and have the test, for example if she were considering having children.

But at present she just wanted to live as normal a life as possible. "I have got a great wee life," she said. "I just want to get on with living it."

John Eden, from the SHA, said the main reason that people did not have the Huntington's gene test was that there is no cure or treatment for the disease and it could be a huge psychological burden for them.

"The test will give you the knowledge that at some point you will develop the disease but you can't do anything about it," he added. "There are lots of implications for people. Having a family history of the disease can make it more difficult to get insurance or a mortgage."

Dr Mary Porteous, a consultant clinical geneticist at Edinburgh's Western General, where people can go for genetic testing, agreed the lack of treatments for the disease put people off having the Huntington's test.

"There is nothing useful we can offer," she said. "Those who do decide to have the test in a lot of cases say they just need to know. They want control over their lives and need that information to go forward.

"Other people want to find out if other people in their family might be affected. But it is a difficult decision to make."

Dr Porteous said that it took around three months for someone to go through the lengthy counselling
process to getting the test done.

AN UNLUCKY INHERITANCE

HUNTINGTON'S disease is caused by a faulty gene which was first discovered in 1993.

This made it possible to create a test so people with a family history of the disease could find out if they had inherited the faulty gene.

Anyone who has a parent suffering Huntington's disease is born with a 50-50 chance of inheriting it.

And anyone who inherits the gene will at some stage develop the disease, although it is impossible to predict when it will start.

The gene leads to damage in the nerve cells in areas of the brain which lead to gradual physical, mental and emotional changes.

The disease does not usually start to develop until after the age of 35. Patients slowly deteriorate over several years until they require round-the-clock care.

Scientists are searching for new treatments for Huntington's disease.

[Captured: 29 March 2008 07:49:53]

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Would you take the test in the same circumstances?
Alan Henness

There are three fundamental questions for anyone advocating Brexit:

1. What, precisely, are the significant and tangible benefits of leaving the EU?
2. What damage to the UK and its citizens is an acceptable price to pay for those benefits?
3. Which ruling of the ECJ is most persuasive of the need to leave its jurisdiction?

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Emma Woolgatherer
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Re: 'I don't want test to tell me if I have terminal illness'

#2 Post by Emma Woolgatherer » March 29th, 2008, 10:34 am

Alan H wrote:Would you take the test in the same circumstances?
Well, obviously I can't be absolutely sure how I'd feel if I were in that situation, but my immediate reaction was: Yes, yes, yes, definitely yes!

If I didn't take the test, I wouldn't be able to go on living happily, getting on with my great wee life as though there were nothing wrong. I wouldn't be able to block from my mind the fact that there was a fifty per cent chance of my having Huntington's. In fact, with my expect-the-worst-and-then-you'll-be-pleasantly-surprised-if-it-doesn't-happen mentality, I'd probably assume that I had it anyway. And by the time I got to my late twenties, I'd be constantly on the lookout for symptoms. Which aren't exactly unique to Huntington's: twitches, clumsiness, memory lapses, depression and mood swings. Every dropped plate, every forgotten name, every bout of grumpiness or gloominess could be interpreted as a symptom. It would be horrible.

So, much better to have the test. If it told me I was carrying the gene, then it would simply confirm my fears, but force me to make decisions about how I was going to live my life [---][/---] i.e. to the full, taking risks I might not otherwise have done, not putting too much effort in finding a life partner, and definitely ruling out the possibility of having children. Or, if it told me I was not carrying the gene, I'd be absolutely overjoyed, a great burden would be lifted, and I'd live the rest of my dull, uneventful life worrying about other things.

Emma

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Lifelinking
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Re: 'I don't want test to tell me if I have terminal illness'

#3 Post by Lifelinking » March 29th, 2008, 10:36 am

That's a hard one Alan. There is no way I could experience the same circumstances. Thinking back to an 18 year old me faced with a choice I think I would have taken the test. Hard situation for this young person to deal with.
"Who thinks the law has anything to do with justice? It's what we have because we can't have justice."
William McIlvanney

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Alan H
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Re: 'I don't want test to tell me if I have terminal illness'

#4 Post by Alan H » March 29th, 2008, 10:50 am

I think I agree with Emma. To know one way or the other allows you to make the life decisions you mention and I think it is better top make them with knowledge rather than with ignorance.

My dad had Alzheimer's and lasted 10 years with it, but towards the end there was little left of the man we all knew and he needed 110% care. If there was a test that indicated that I might/would get it (bearing in mind there are some possible hereditary factors) would I take it? I just don't know.

Reading the Alzheimer's Society website, they say that an early diagnosis will:
* help you plan for the future
* enable the person with dementia to benefit from the treatments that are now available
* help you identify sources of advice and support.

There is no straightforward test for dementia. A diagnosis is usually made by excluding other causes. The GP or specialist will need to rule out infection, vitamin deficiency, thyroid problems, brain tumours, the side-effects of drugs and depression.
I suppose if there were an early test for it, I might take it so I/we could be prepared, but hopefully it will never happen!
Alan Henness

There are three fundamental questions for anyone advocating Brexit:

1. What, precisely, are the significant and tangible benefits of leaving the EU?
2. What damage to the UK and its citizens is an acceptable price to pay for those benefits?
3. Which ruling of the ECJ is most persuasive of the need to leave its jurisdiction?

Fia
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Re: 'I don't want test to tell me if I have terminal illness'

#5 Post by Fia » March 29th, 2008, 5:40 pm

I wholeheartedly agree with Emma, I reckon even my 18yr old self would have too. Such a huge thing that might or might not happen, and I can have a test to remove the doubt, be in control, plan... Absolutely yes. But that's the way our personalities work and I can see how others would not see it that way, as this girl, getting on with her life, making her own choices.

I think possibly Altzeimers might be a different thing though. I work with some dementing people, many of whom have other types of dementia. As we live longer, this is more likely. I've come to the conclusion that should I live long enough I'll probably dement anyway. But then Woody Allan (I think) said "We can live to be 100 if we give up all the things that make us want to do so" :D

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wattsll
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Re: 'I don't want test to tell me if I have terminal illness'

#6 Post by wattsll » March 29th, 2008, 7:46 pm

I'm pretty sure I'd take the test also. Knowing that I may have a terminal disease that will affect me later isn't much different than knowing that I'm going to die of old age sometime later (if nothing happens first). I'd rather know and maybe be prepared a bit better for when the time comes, than have it strike my family and I by surprise. Knowing may also allow me to participate in studies and the like that may well come up with some sort of cure or treatment.

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Alan H
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Re: 'I don't want test to tell me if I have terminal illness'

#7 Post by Alan H » March 29th, 2008, 8:38 pm

wattsll wrote:Knowing may also allow me to participate in studies and the like that may well come up with some sort of cure or treatment.
You're lucky to be able to do that [---][/---] I don't think my degree in Electronics would help me come up with a cure for anything!
Alan Henness

There are three fundamental questions for anyone advocating Brexit:

1. What, precisely, are the significant and tangible benefits of leaving the EU?
2. What damage to the UK and its citizens is an acceptable price to pay for those benefits?
3. Which ruling of the ECJ is most persuasive of the need to leave its jurisdiction?

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wattsll
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Joined: March 17th, 2008, 5:07 pm

Re: 'I don't want test to tell me if I have terminal illness'

#8 Post by wattsll » March 30th, 2008, 4:33 am

I wish I had that sort of know-how. I meant as a test case. Sorry for the confusion.

lewist
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Re: 'I don't want test to tell me if I have terminal illness'

#9 Post by lewist » March 30th, 2008, 9:16 am

Alan H wrote:In today's Scotsman:
Miss Gailley, who recently got engaged to boyfriend Scott, said she might change her mind in future and have the test, for example if she were considering having children.

But at present she just wanted to live as normal a life as possible. "I have got a great wee life," she said. "I just want to get on with living it."
The second point is very valid for an eighteen year old. Even if she goes on to develop Huntingdon's in later life, she can live a full and normal life until the onset of symptoms. The first point is much more serious. Should she reach the stage of thinking about having children she should have tests and genetic counselling. If she has the faulty gene, should she have children?

A good read which also deals very effectively with this issue is The Future Home Makers of America by Laurie Graham.
Carpe diem. Savour every moment.

Occam
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Re: 'I don't want test to tell me if I have terminal illness'

#10 Post by Occam » April 6th, 2008, 7:09 pm

I would want to know because I feel that my decisions in life should be based on the maximum amount of information. However, I can understand the young girl's feelings. She may not be able to handle the idea that her life is limited, so she'd rather not take the chance of knowing.

Occam

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grammar king
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Re: 'I don't want test to tell me if I have terminal illness'

#11 Post by grammar king » April 10th, 2008, 7:05 pm

I'd want to know. I think knowing would affect your life less than not-knowing would. And unless you know, you'll always wonder whether or not you should have kids... I'd rather know.

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