Life with a Lethal Gene

charles robert darwin writes "The New York Times is running a story on young people who are choosing to get genetic tests for conditions like Huntington's Disease that develop relatively late in life. Apparently, while a genetic test for HD has been around for a while, very few people who have a parent with the disease choose to take the test. This story focuses on a young woman who did and tested positive. The piece follows her as she deals with the consequences. '...as a raft of new DNA tests are revealing predispositions to all kinds of conditions, including breast cancer, depression and dementia, little is known about what it is like to live with such knowledge.' With the HapMap and the $1,000 genome, this is something we are all going to face in one way or another very soon, and we really need to start thinking about it."

Comments

Ignorance is bliss

[kaufmanmoore]

We're all going to die sometime

Re:Ignorance is bliss

[pchan-]

Why? If I knew I was going to die in 5 years, I wouldn't bother saving for retirement, or trying to get ahead in my career, or buying a house, or not getting that really nice sports car that I talked myself out of. I also wouldn't have any children if I would be passing on the disease to them, or just leaving them without a parent, for that matter.

I would also probably be bummed out for a while. But on a long enough scale, we are all dead.

Re:Ignorance is bliss

[TodMinuit]

But if enjoying life is doing everything that is bad for you, why not do all that stuff anyways? If you avoid it, by defintion, you haven't really lived.

Re:Ignorance is bliss

[DrEasy]

But how about the people you care about and who care about you? They probably would like you to live a long life, even though it may contradict your "live fast, die young" credo.

(BTW my .sig has never felt more a propos)

Re:Ignorance is bliss

[Mad Merlin]

I think you should also consider that the anticipation of doing something is often better than the actual doing of something. When you find out you have, say, 3 months to live, you can no longer anticipate to do a lot of things, and that makes your last 3 months of living rather miserable, if you ask me.

I guess what I'm really saying here is that my plans for the rest of my life are far more important to me than anything I could do in a final 3 months, regardless of any knowledge of my imminent demise.

Re:Ignorance is bliss

[dvice_null]

If you know that you are going to die within the next 5 years, it doesn't mean that you are going to die. When we learn about genes, it does not only give us the tools to know that we are going to die, it also gives the tools to prevent it from happening.

Re:Ignorance is bliss

[packeteer]

From the article:
But Ms. Moser bristled at the idea that she should have to remain ignorant about her genetic status to avoid discrimination. "I didn't do anything wrong," she said. "It's not like telling people I'm a drug addict."

Its ironic how she goes off through the whole article about how people look at her unfairly, like she has done something wrong. She goes off about how its not her faults and that it is a medical condition and people should understand that. Then she goes an accuses drug addicts of being the people who REALLY deserve the negative attention.

Drug addiction is a disease that is often caused by a set of genes. She is responible for the same discrimination that she feels is wrong. She doesn't realize that drug addicts are just as helpless to avoid onset of their symptoms as someone with Huntington's Disease.

It's bitter irony but it makes me angry to read it. Sometimes it seems like everyone thinks they are special and different and the rules don't apply to them.

yawn...

[Dance_Dance_Karnov]

let me know when something can be done about these genetic defects.

Hey, a crystal ball!

[ViX44]

I find it amusing that you can put a dusty old woman in a jangling dress with a crystal ball, a little golden pyramid, and a chart of constellations on the wall, and people will give up their money to "have their fortune told," but offer to do it for real and they step back.

It's a cultural problem that people aren't brought up to take control of their lives to the extent they can, and leave the remainder to fate, under the name of whatever diety you think looks coolest on your lunch box.

Risking the chance of sounding like a Tyler Durden or John "Jigsaw" Kramer, a fear of knowing one's fate is a true cowardise that has troubled humanity for ages. Faced with one's mortality, humans will avert their eyes in ignorance, fall to their knees in prayer, or just bawl like infants far more frequently than they will take a breath, think of a plan to make use of their life, and strive toward a goal.

This makes sense, when you remember that a large amount of the population, told they have 1% of their lifetime remaining, will look back at the past 99% being sunk into wastetimes like watching American Idol, arguing with potential life-mates over use of hand towels, and choosing for or against the strinne-green sofa. You only notice the time you've wasted when you look at the clock.

Re:This is a major issue...

[zappepcs]

I didn't want to mention it to avoid seeming a troll, but there is one other VERY important thing that Star Trek predicts: The removal of religion from society. Even though characters were spiritual, and expressed morals that are mostly in alignment with religion in general, there was AFAIK no religion that Federation citizens practiced.

Without religion, half if not more IMO, of the 'secret agendas' that people have will simply disappear.

Just a thought

having kids?

[ColGraff]

Interesting point - in the article, a therapist tells Ms. Moser that it would be unethical for her to have kids. This makes her very upset, understandably. But is he/she right? If you know that any children of yours are likely to have a short life and a protracted, horrible death, is it wrong to reproduce?

I tend to think it is, but that's me.

Re:having kids?

[Reziac]

My take on it: What gives you the right to KNOWINGLY inflict a high probability of unusual suffering and early death on your children? How is having a child in that situation NOT unfair to your kid?? It's like saying to your kid, "We knew in advance that your life would probably suck big-time, but we did it anyway." Producing a child under such circumstances isn't love, it's just selfishness.

Re:Simple solution

[ScrewMaster]

In the end, it all comes down to quality of life. Existence, in and of itself, isn't sufficient, although some would say it is. Our society (like most other "civilized" cultures) hasn't really figured out how to deal with people suffering unending pain and misery. Is shooting them in the head the answer? Some would say so ... but that's rather uncivilized at best, and rather brutal by our standards. Of course, there's always euthanasia, but everyone's afraid that, should that practice become legal and popular that they'll be put down before they're ready, because most of us aren't in control of our own destinies at the end. That's a justifiable fear, I might add: I've seen it happen. There's less respect for life in our medical system than the people that run it would like you to believe.

There reality is that there are no simple solutions that are compatible with American law, and tradition, and our belief in the value of human life (and yes, I know that we mow each other down by the thousands in cars every day.) There really aren't, and that's the problem.

A couple of years before my father died (he had diabetes mellitus, with a capital "D") he was on peritoneal dialysis due to total renal failure, in constant severe neuropathic pain until they put him on Dilaudid, suffered multiple strokes and heart attacks ... at one point he said to me, "I think I should go off the dialysis". That would have meant a coma, and death. It's an easy way out, because they cannot force treatment on you: you only have to refuse it and die.

If I had to go through it again, I wouldn't have talked him out of it. That was selfish of me, although I didn't understand that at the time. You live and you learn.