[Closed] CJD test - moral dilemma

I would want to know - Id hate to be wasting my time at work when I could spend my last months/years riding my bike.

I dont like surprises, I like knowing stuff.

I used to eat loads of crap beef burgers back in the 80s 🙁

I know that my Mum is quite worried specifically about my chances of catching it because I was such a burger fiend.

Not sure if I would want to know to be honest. I would have to think long and hard about it.

I think I would want to know. It is a terrible disease and knowing would give you time to sort out your affairs before you reach a point when you are not able to.

Given that it is a disease which strips away everything that a person is and undoubtedly rips whole families apart as they try to cope I would probably choose to top myself once the symptoms start to appear.

Like Trimix, I like to know stuff even if it isn't for the best.

[smugness]I am a a veggie and was all through the period in question so no[/smugness]

I wouldn't want to know.
I'm more comfortable knowing I will live forever and never have to face death.

[url= http://icbirmingham.icnetwork.co.uk/0100news/0100localnews/page.cfm?objectid=12896371&method=full#story_continue ]null[/url]

Seems veggies are at risk as well. Some animal products ended up in all sorts of food...

I would want to know - Id hate to be wasting my time at work when I could spend my last months/years riding my bike.

And me.

I wouldn't.
The concept of national screening sounds great but people imagine that a test will be 100% accurate. They never are, you'll always get a percentage of false positives and false negatives. Given that the disease appears to be incredibly rare, and has no cure or treatment, I would think that the chances of gaining a false positive in the test may be higher than the odds on having the disease in the first place.

And they want to know how he could have developed the killer condition when he was brought up in a vegetarian household and [b]only ever ate a minimal amount of beef[/b]?

The answer could lie in [b]gelatin[/b] - a meat protein used in products like yoghurt and alcohol

I was /am strict so unless it was contamination I will be fine as I did avoid all meat by products as well/

I'm fascinated by the faith people have in the "scientific community" sometimes. I've yet to find a convincing piece of evidence that proves BSE can be passed on to humans via eating "contaminated" meat etc. Obviously nvCJD is related to BSE and I can understand how it can be passed on via injection of bovine based products intravenously etc but eating meat?

All the press scaremongering and instigation of controls at abattoirs, export bans etc seemed to be based on experiments involving the injection of infected brain material into the brains of mice and similar bizarre things. Any research that suggested there was no link was either ignored or hidden in page xx of the newspapers.

The same scientists were predicting a massive surge in the incidence of nvCJD as early as the late 80s-early 90s. Their argument for why it hasn't happened yet..... the incubation period might be longer.

Just my cynical 2p's worth

[url= http://www.cjd.ed.ac.uk/figures.htm ]UK CJD and nvCJD statistics[/url]

makes interesting reading.

trailertrash - that's my point. Plus the UK incidence of vCJD seems to have stayed very similar to global trends... and obviously no other countries had BSE did they?...

Thanksfully I was a pill popping raver and midnight toker

did you ever check exactly what was in those pills? 😉

fbk - As you point out the responsibility for scaremongering lies with the media. When the TV, radio or press covers scientific or technical subjects where I have a certain amount of expertise, the accuracy of the reporting is woeful.

I'm sure there are highly qualified scientists who did predict a vast number of nvCJD deaths, and these are the ones who appeared on TV and in the papers. If you're a TV producer and you have one researcher saying sensible measured things like "... we have no reliable epidemiological model for predicting the spread of nvCJD ..." and another foaming at the mouth and forecasting the end of the world, which one do you choose.

Don't be cynical, do be sceptical.

HughStew - absolutely. The older you get, the more you realise that the majority of journalists/reporters won't let silly things like facts get in the way of a good story. No matter what the long term consequences are!

did you ever check exactly what was in those pills

Risk is 1:4000 apparently of developing vCJD (BBC stat, so ?accuracy). Screening might tell you that you've got it, but current science doesn't offer a cure. So can't see the point of asking to be screened. My understanding is the test will be used to screen donated blood as blood donations have been proven to be a source of vCJD transmission. It'll be added onto the screening of donated blood in the same way HIV & hepatitis have been over the last 10-20 years.

[url= http://www.cdc.gov/ncidod/dvrd/vcjd/epidemiology.htm ]Centre for Disease Control BSE/CJD info[/url]

would be pointless knowing
the chances of you contracting BSE even if you were positive for vCJD (as said above a causal link is debatable- receiving contaminated blood however...) are so ridiculously small youre far more likely to give yourself a heart attack worrying about whether you have it or not

fbk you are confusing the scientific community with 'our scientific correspondent' 2 very different things

[smugness]I am a a veggie and was all through the period in question so no[/smugness]

Still that means you've lived most of your life denying yourself some of life's greatest pleasures, so swings and roundabouts eh? 😛

My parents were hippies/lefties in the 80s and we never got to eat any nice tasty burgers, so hopefully I'm OK.

Where does that 1 in 4000 figure come from btw?

http://www.cjd.ed.ac.uk/figures.htm

so 90 deaths a year from vCJD compared to

cyclists on the road 2009

104 killed another 2606 were seriously injured
http://road.cc/content/news/24515-uk-cycling-deaths-continue-fall

Still that means you've lived most of your life denying yourself some of life's greatest pleasures

And you could be my size if you had done the same 😉

[i]Where does that 1 in 4000 figure come from btw?[/i]

Random guess from some random paper that isn't referenced.

/edit After a bit of googling i've found it

[url] http://onlinelibrary.wiley.com/doi/10.1002/path.1580/pdf [/url]

[quote> http://www.cjd.ed.ac.uk/figures.htm

so 90 deaths a year from vCJD compared to

No, 90 a year from CJD not vCJD. CJD has always been around. vCJD is the one allegedly from contaminated meat products/BSE, afaik.

About 1 a year from vCJD.

I think what you should be worrying more about is water contamination by prions, as one of my learned friend is quite concerned about this.

well in that case 100 times more likely to get run over!

Well, I've been tested for a genetic disorder. As far as I am aware, neither my sibling nor my cousins want to be tested.

I have children and feel it is only right that they should know whether I am a carrier.

But, as the OP stated, there could be implications.

I still feel confident that I made the right decision.

I would want to know - Id hate to be wasting my time at work when I could spend my last months/years [s]riding my bike[/s] organising and carrying out a Leonardo Notarbartolo-esque jewel heist, making sure my family were sorted for life and I was remembered as the greatest criminal mastermind of our times.

FTFM.

Your "moral dilemma" has nothing to do with morals and, since you can't currently choose to be tested, is not strictly a dilemma either.

Problem solved. HTH.

until they find a cure, I don't see any value in knowing as no test will be 100% accurate so you just run the risk of unnecessary worry.