sudden death screening unethical?

[misdee]

this is old news but

senior medical officer in Northern Ireland has argued against screening for heart defects to prevent sudden adult death syndrome.
Doctor Margaret Boyle, a member of the UK National Screening programme, said further research was required before adequate treatment could be offered to those affected

full story here news.bbc.co.uk/1/hi/northern_ireland/3628255.stm

i know treatment is limited, but surely anyone with Hypertrophoic cardiomyopathy should be aware of it, and have regular check ups? just because the treatment which can prevent sudden death isnt available yet, doesnt mean we have no right to know about it!!

No, I think I agree with the doc.

I'd become neurotic as hell if I found out that I could die any minute for another reason (regularly walking/driving on Spanish roads is the other potential cause). If there's no treatment and no prognosis (eg 6 months to live), I wouldn't want to know.

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froot, long q-t can not only be detected but is treatable with relative success, many heart defects which can be detected are not correctable nor treatable which I think is a different issue. Would you want to know you had a heart condition that may never ever present or alternatively, may cause you to die tomorrow, but had no treatment? You could have years and years of stress, upset and anxiety for something that may never happen and can't be stopped anyway

personally I would not like to know, however everyone is different.

i'm sorry, but a friend of mieows, her young son died from HCM. They knew, and knew what might happen. at his last echo his heart function was so tiny that they knew the end was near. for most people with HCM and even DCM the conditions stay hidden, and a lot of people live full and near normal lives. but for a few their lives have to 'adjusted' to take into account their heart function. The irruglar heartbeats that these condition cause can in some way be controlled by having a pacemaker-like device fitted. The conditions cant be cured, in fact a lot of the time the only treatment (after drug therepy to keep things stable) is a transplant.

and i belive football clubs want players screened after deaths of seemingly healthy young men.

I think it's like genetic screening, you should know if you want to know. Some people will want to know and some people won't. Let everyone make their own decision.

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well unfortunatly for my family we do know my dh is at risk of Sudden death. it does worry us, but at the same time it adds something to everyday life. we dont worry continuously about it, but do make choices that make life easier. My dd2 has been screen, so far only an echo which showed soft systolic murmur and nothing else, and dd1 is probably going to be screened soon. Its unlikely they will show symptons at this young age anyway, but as dh has DCM they are 'at risk', even if we have conflicting advice from hospitals.

I agree with you misdee. DCM, long QT and anomalous coronaries can can run in families (as you know). If you were affected you could avoid certain activities and as Lisa says some conditions can be corrected and/or treated with medication. Gaby Yorath's brother died of an undetected heart probelm whilst playing football (long QT I think).

My friend had a baby boy 3 weeks before I had DD2, at 6 weeks old it was discovered he had HCM. He was rushed to The Royal brompton in london where they discovered that he had small heart function. He was put on drugs and started to thirve, and my friend was told that if he made it to 18 months they could give him a heart transplant but at 4 months old he became very ill and was taken to the local hospital, he was given a scan, which showed his heart muscles flickering, rather than beating, and they knew the end was near, they were allowed to take him home, and an O2 machine was installed the following day, the doctor came and saw him in the morning and she was told he only had about 2 weeks to live, he died 2 hours later. They are glad they knew and had him at home for the final moments of his life. He dies in my friends arms.

Screening programmes are unethical unless they offer accurate information upon which you can act. If they can say, 90 per cent of people with this result will actually have condition x and here's the treatment, then fine. If all they could do is say, you may possibly have condition y, but there's nothing that we could do about it anyway, then it would be unethical.
Big debate about screening for prostate cancer, for example. It's a condition that affects many elderly men but in the majority of cases it isn't fatal; you die of something else long before the prostate cancer would get you. The only available test, PSA, isn't very specific, doesn't distinguish between aggressive prostate cancer that might kill you and 'normal' prostate cancer that you will live with until you die of other causes. So, is PSA screening worthwhile? Most docs think not, that's why it isn't generally offered on the NHS. But people interpret this as 'evil docs trying to save the NHS money by denying men treatment they need'. So commercial organisations make a lot of money offering PSA screening to worried men who then want treatment for something that might not cause them any problems anyway.
Until they develop a test for prostate cancer that can clearly say either you have agggressive prostrate cancer that can be treated, or you don't, I wouldn't bother. But then I'm not an elderly man. Maybe if I was I'd feel differently.

I would want to know

Oh mieow. What an incredibly sad story.

Only a little froot - degree in biology with emphasis on genetic disorders / virology

From what you have said, I would take the referral for the long q-t test, there is nothing to lose by it and a lot to gain. I would think its NHS referrable - I think privately would be quite expensive

the thing is, thse tests are non-invasive. a seires of echos and ECG would suffice.

i have had to battle for my dd's to be screened. with #3 the hospital referred us straight to guys (appointment just over a week) for fetal cardiac scans as soon as they heard the words cardiomyopathy. medication can help, but cant cure.

I know Coppertop, still makes me feel really sad two years on, he weighed 7lb 1oz at birth but weigh just 7lb 6oz when he died, he didn't grow! I meet my friend in hospital when we were both admitted at 27 and 31 weeks, we stayed up all night chatting and just "clicked" Two and a half years on, they are trying for a baby (have been trying for 2 years) but its just not happening for them. She has been through so much and I just wish them happiness.

me too. hope things happen for them soon.

I don't agree that it's unethical in this case. If you are found to have DCM, long QT etc then you can be treated (not cured admittedly) by medication, make lifestyle changes, be aware of your risk factors and also make decisions with regard to your children.

Mieow - so sorry about your friend's baby

but dont they do screening if there is a fasmily history of cancer (breast cancer?).

Screening is available for familial breast cancer but no-one is offered it without extensive counselling (shouldn't be, anyway). That's a different issue though- you can virtually eliminate the risk by choosing a prophylactic mastectomy, and if you don't choose that then you can have regular screening to pick up early changes. The other issue is that if you have a mutation in one of the breast cancer genes you have a 90% chance of developing breast cancer, so a low rate of false alarms. Quite a different scenario from screening for something for which there is no cure or real treatment, and where there will be a large number of false positives, like the PSA example edam has given.