I realized that when I posted, but I don't think one can eliminate reproduction from a reasonable discussion of this issue. Huntington's Chorea is a horrible disease with an even uglier manner of death. But the most hideous aspect of Huntington's Chorea is that it rarely presents symptoms until after people have had children and thereby unknowingly passed along the gene. For this reason, geneticists years ago - long before the human genome project was a twinkle in any of their eye's, set out to find the genetic markers for this horrific hereditary disease. 50 years ago people didn't have the opportunity to know this information; since at least the 1970's they have. And geneticists have counseled carriers on its reproductive risks ever since. Unless one with a known family history of Huntington's is willing to forgo having natural children, not knowing is irresponsible. I've not heard any evidence that 13 has made this decision....all I've heard is that "not knowing makes her take chances" - immature reasoning in my book, but as long as those chances don't yet include having babies - well.... let her knock herself out bunjee jumping, working for House or whatever she fancies.

It's fine to say that the hypothetical question is based on having child not being a factor, but it is a factor in life. Symptoms for HC don't start until most people are past the age when they would have children. But, if you have the gene, there is a 50% chance that your children will contract it. And the children of those who get it will have a 50% chance themselves. But, if you don't have the gene, there is a 100% chance that your children won't get HC (unless the other parent is a carrier, but the odds of that happening are infinitesimal.) And yet there are people who had a parent die of HC who choose not to be tested and who have children. (Arlo Guthrie always springs to my mind when discussing HC. He and his wife had 4 kids before genetic testing was available but I always thought that if I knew that there was a 50% chance that I would die young of a horrible death and, if I did, each of my children had a 50% chance of the same thing happening, I wouldn't have kids. Anyway, he's 60 now so he seems to have dodged the bullet.) So, if I had already decided "no kids" would I do it. The fear that my medical information would not remain confidential would be a strong "no" -- people who have a genetic predisposition to a disease sometimes find themselves unable to get health or disability insurance. And people with the HC gene go beyond a "predisposition." But even so, I think I would get tested.

I don't think being a woman of childbearing age has much to do with it. There are ways to avoid having children. Contraception of all sorts, abstaining from sex, sterilization. My aunt and uncle chose not to have children, back in the 70s, because the test didn't exist yet and her father had died from Huntington's. Which apparently only she acknowledged to other people - my mother accidentally mentioned this to her sister-in-law at my aunt's funeral, who had no idea. But since her brother is still around they seem to be fine. Unfortunately, not having children increased my aunt's risk for the ovarian cancer that eventually killed her, right around the age where she would have developed symptoms if she'd had the gene. I don't know if I could live without knowing, myself. I guess I could go through the same actions of trying to make sure that my care wouldn't be a huge burden on my family and doing things I really wanted to do, and it wouldn't matter if I did know. I don't know how I'd feel about entering into a long-term relationship with someone if I didn't know, though. It's one thing to cause myself stress, it's another to put that stress on another person.

50 years ago people didn't have the opportunity to know this information; since at least the 1970's they have. And geneticists have counseled carriers on its reproductive risks ever since. I was wondering about this, have rates of Huntington's dropped as a result? I remember reading that the incidence of Tay-Sacks and thalassanemia had dropped in Quebec after they started making genetic counselling and public education availabe there 20-30 years ago. It's fine to say that the hypothetical question is based on having child not being a factor, but it is a factor in life. Of course, Poeia, I just wanted to base the question on what people would do for themselves alone. And yet there are people who had a parent die of HC who choose not to be tested and who have children. Really?

I don't know! That's a hard question, and thankfully I've never had to make a decision like that before. I said I wouldn't want to know, because I feel like I would spend my entire life dreading that event. I don't know how I'm going to die, but if someone told me, "Hey, you're going to have a stroke and die" I would spend my entire life dreading that. Not knowing means you have the possibility of dying of anything. If 13 doesn't get tested it gives her the same possibility of dying of anything else, including Huntington's. If she gets tested and finds out she has it, then she knows how she's going to die. However, I have heard of people with genetic diseases getting tested right before they have children to make sure they're not going to pass down the gene. That makes sense. Maybe if I was worried, I'd get tested. Or else adopt. :)

I wouldn't get tested. Not knowing is not nessiciarily better , but its just personal preferance. I don't particiularly want children, but the gene is imminent my grandmothers sister had Huntingtons- but my grandmother didn't exhibit symptoms. I'd rather live my life, take risks, and not worry if im gonna drop down dead. I mean there are other ways to die- We could all be killed in a shooting massacre tomorrow. Its just another thing left up to chance. And I'm gonna take my chances.

I would get tested. If I lived in the US I'd make sure that my health coverage was valid and then get tested. My reasons however are very different from the ones I've read so far. The amyloid field, which Huntinton's belongs to, is developing at lightning speed these days. I don't think anyone in the field expect a cure although stem cell therapy might offer some lost functions to be regained. Rather the goal is to find therapies that stop the disease progression. The more we find out, the clearer it becomes that early diagnosis is among the most important factor in that. I'd get tested because that would be the starting point for regularly monitoring symptoms and possibly entering early stage experimental trials. Who knows if Huntington's is a definite death sentence ten or fifteen years from now? I don't.

...stem cell therapy might offer some lost functions to be regained. And you mentioned health coverage in the US? Funding for stem cell research is even more rare it seems. Actually, one of the reasons I would not get tested, and I didn't include it here (but did in the discussion for the class this summer) was for health care coverage. I'm fortunate to live in a state which does have coverage for individuals at high risk, however, I can easily see this as a question that can come up in an interview for health insurance or an employee physical. And I can easily see a denial of coverage for a positive test (or denial of employment). Silja, I can see the advantage to living in a country with health care coverage because you are pretty much guaranteed coverage/treatment. Even if there were experimental treatment, in the US, it would usually not be covered. I could see that if I lived in a country with guaranteed cheap/free coverage I probably would at least monitor myself for symptoms, and if I heard about a breakthrough in research, I'd call my doctor and then ask for the test.

Yes, I can't stand not knowing things. If someone tells me something i don't like (example: House psychoanalyzing me(nobody likes that)) then I'm bummed out and ask: Do you regret knowing? I say-I'm not happy about it but I would rather know that not.

Speaking of this topic, the New York Times had an article about DNA testing and insurance fears: http://www.nytimes.com/2008/02/24/health/24dna.html?_r=1&ref=health&oref=slogin I'm not sure how much longer the article will be available without needing to login, but I've had an NYTimes account for a few years now and it's worth it. And after reading the article, I'm amending my position. I would not get tested, for the insurance fear, but would get tested if I started to show symptoms. By that point, the disease is active and it would be better to know than not to know. And Jimmy, if it didn't come down to the fears of insurance, and possibly diminished quality of life, I would get tested. Especially if the disease was preventable and/or treatable early before the symptoms became too severe to deal with.