h2g2 The Hitchhiker's Guide to the Galaxy: Earth Edition

Now, I've just been down the pub, so I might make less sense than usual. Also, my laptop says Windoze is 'corrupt' (yes, I knew that) so I'm on the lookout for a new OS. If anyone knows of one, please tell.

But here's the issue of the day. Or the Hypothetical of the day, if that helps.

If you knew that there was a very good chance that you had inherited a genetic defect that could be passed on to your children, and that could affect you in time, would you go and have the medical tests?

As the usual first symptom of the defect is sudden death, would you worry about your own future? Getting hit by a bus could be just as terminal, but not as quick.

If you weren't planning to have children, would you be concerned about the possibility of passing the defect to children you don't plan to have?

Would you just decide to go on with life as it is, choosing a short happy life over a slightly longer life with a greater degree of worry?

OK, it's not hypothetical. For me, this is the icing on the cake - it's not just my sister's heart, it could be mine too... As I'm unlikely to have children (it's Infinitely Improbable, in fact ), I don't have to worry too much about that aspect - but I'm wondering if I should put myself through the mill and get thoroughly tested even though I'm quite relaxed about the idea of a sudden and painless extinction.

Or maybe that's just four-hours-at-the-pub talking.

Why not have the tests done just to know if you do actually have anything to be concerned about? Just because something runs in the family doesn't mean it has been passed on to you.



az

Being a data girl, I couldn't stand not knowing, but I may be different from you.

And gah, the world would be a better place if nifty couples of which charming guys like you were one half *would* raise children.

hmmm, are you talking about genetic testing or other kinds of tests (like heart function)? Genetic testing is a tricky thing. If you show positive for the gene what does that really mean - that you will certainly have problems? Or that you will have a tendancy to have the problem but might not?

Also if you have the gene, and thus a higher likelihood of problems, in what ways does knowing help? Will you be able to access better treatment or sooner treatment?

What would be the advantages of having the test?

In terms of passing it on to chidren - what is the likelihood of you fathering children (intentionally or unintentionally)? If it's infinitely improbable, then you could leave that out of the dilemma altogether.

Personally, I'd have to have a really good reason to have the test done - I don't think curiosity would do it for me. But then you can't tell 'til your in the situation, yeah?

Thanks, both of you.

This is a thing I'll have to consider seriously when I'm sober. At the moment, I'm going into professional mode - I'm a systems/business analyst...

Reasons to have the tests done:

Certainty. I'll know what risks I'm running, if any. For a start, if I have this problem, I'll have to find a new type of antihistamine; the one I use is contra-indicated.

Peace of mind, knowing that I'm doing what I can to look after myself.

If, one of these days, something changes in my life or some sort of in-vitro fertilisation is an option, then I will *need* to know what my genetic material is like.

Reasons not to have tests done:

I'm 33 and have had no cardiac trouble. Not so much as a fainting spell. Ever. As Long QT Syndrome usually manifests at a younger age, and the first symptom is usually death, it would probably have been noticed by now.

The condition appears to be hereditary in Dad's family. I take after Mum in most respects. I have her arthritis, her sciatica, her astigmatism, and her perpetual weight problems. I have none of Dad's physical problems - and it was cancers in the brain that did for him, not a cardiac problem.

Factors affecting whatever decision I make:

First I'd need to see my doctor, who is booked out days in advance. Then I'd need a referral to an electrophysiologist. There are no electrophysiologists in Canberra; I'd have to go to Sydney or Melbourne as soon as an appointment was available.

If one of these days there's a possibility that I might be able to become a (biological) parent, then I could seek clearance at that time, when it matters.

I don't like doctors much.

A few decades of fatalism is also a hard philosophy to change.

In conclusion:

I need to sober up rather a lot before I work through this one.

Kea, we did a simulpost.

The testing would be heart-function testing, for the most part. The genetic situation is still unclear; there is a genetic link, but I'm not sure research has gone much past that. There'd probably be some blood tests as well, which always make me feel ghastly, but that's a minor issue.

I'm wavering - get tests done and have certainty, or leave the matter alone and see what happens. I need to sleep on this one. I'm inclined to leave the matter alone, but... well, one never knows, that's all.

That makes sense Ivan. I think that the PR around genetic testing far outstrips its actual usefullness alot of the time. Getting heart function tests is another matter, but you seem pretty clear about what your options are.

If the tests showed a problem would you then be offered medical treatment? Or would it be a matter of ongoing monitoring?

If you've just had new information about this today, taking time to let it sink in and think about it before making decisions sounds good

Ivan, I had assumed it was a 'ticker test' you were talking about. I think, as I said before, I probably would want to know. Mind you, my sister wrote to me awhile ago telling me that apparently there is a tendency for blood-pressure related problems in our family. She suggested I get a thorough physical examination to make sure I was okay and I still haven't done this.

When I lived in Canada I always had a routine annual physical done. Since moving to Spain I don't do this anymore, and I don't even know why not. Especially since I am now at an age where these various 'leaks' tend to spring up in one's boat, so to speak.

Perhaps it is a general distrust of doctors? In Toronto I had the best GP ever - he was always very blunt but also very caring. And also very honest. I miss having such a special doctor/patient relationship like that. Though no doubt I should at least try to find something similar here. And your dilemma has started me thinking seriously about this.

az

Personally I'd do what affected the way I act the least. If I thought knowing would make me depressed and ruin any time I might/might not have left I wouldn't get the test. If I knew I could handle either result then I'd do it. That's just the way I am. As it happens we could all drop down dead at any moment, I think that;s what you'd need to keep in mind, at least you'd know what killed you

Well, I think I'd have the tests... but then I'm not faced with the situation you are... so who really knows what they'd do? I do know you can't make a decision like that unless you're sober

Why not give yourself a deadline by which time you will make a decision - like May 20th say? Think about it until then, then make your decision and live with it...

My brother's just been diagnosed with angina and has to have a stent put into one of his cholesterol-clogged arteries next month. I'm off to the doc next week to get my triglycerides and cholesterol tested. If either are high, I can do something about it. And there is the crucial difference. Would I want to know if it was something incurable?? I just don't know.

Fb

I would like to know everything I could suspect. It's easy not to worry about anything I don't know but suspecting is even worse than knowing.

Something else you could do it go ahead and make that initial appointment now. That's a sort of tangible that might help you decide, and you can always cancel.

I think that's a really good suggestion, Nyss.

az

I'm still thinking... So far, I've decided not to rush into things. Not that I *could* rush into anything over a series of public holidays, mind you.

So far, I've decided that if I have any tests done, it won't be for me but for my hypothetical future children, if you follow. You see, I'm here now, and whatever might be wrong with me hasn't actually affected me so far. But there's a world of difference between ignoring something that might affect me one day, and wilfully ignoring the possible existence of something that might kill my hypothetical child before it reaches adulthood.

If I do get tested, and I do have a problem, then I would be on medication for the rest of my life. Rather a nuisance, but I could manage it. But then again - why medicate to reduce the probability of one form of death when I'm gleefully taking other risks? I drink, I stay out late at dodgy nightclubs, I cross busy roads at peak hour... Getting hit by a bus is a more likely fate.

Thinking continues. I like the idea of setting a deadline for a decision. I might also try to see my doctor sometime this week, just to get the wheels turning.

I think that if you have a tendancy towards a condition and you need to take medications that may trigger that condition (you mentioned that you would need to change your antihistamines) then it is much better to know. It could also help the medico's if your are ever needing treatment on an emergency basis. Every bit of information that you already have about your body can either reduce the number of tests or alter the type of tests needed in an emergency and so reduce the time taken to come up with a diagnosis.

Regards Maz

Thanks Maz. That is a very persuasive post. I hadn't considered *all* the ramifications of *not* getting tests done...

The fact that you work in the medical field is also rather persuasive, of course .

Still thinking....