Thirteen's Choice: Would You Get Tested?
From the Mayo Clinic: Huntington's disease is a progressive, degenerative disease that causes certain nerve cells in your brain to waste away. As a result, you may experience uncontrolled movements, emotional disturbances and mental deterioration. Huntington's disease is an inherited disease. Signs and symptoms usually develop in middle age. If one parent has the single faulty gene, the chance that an offspring will have the defect is 50 percent. Everyone who has the gene eventually develops Huntington's disease, if he or she lives long enough. Medications are available to help manage the signs and symptoms of Huntington's disease, but treatments can't prevent the physical and mental decline associated with the condition. The disease usually develops slowly, and the severity of signs and symptoms is related to the degree of nerve cell loss. Death occurs about 10 to 30 years after signs and symptoms first appear. People with early-onset disease may progress faster. So. Assuming that having children yourself isn't a factor, if you were in Thirteen's position and had a parent who died of Huntington's disease, what would you do?

That's a touch choice to put in simple black and white. While it's not a true comparison, though, I went with what I know. My sister died of ovarian cancer. Her daughter was freaked out enough that she had a hysterectomy at the age of 30 (she'd already had two children, and didn't plan on more). Me, I've opted against taking the test to determine if I have the gene that would make me more likely to develop it. So I had to go with the "no" option. Truthfully, I think it's too easy for people who aren't facing a choice like Huntington's to pass judgment, and I can respect either choice.

Well this isn't about passing judgement or disrespecting others' choices, real people or fictional characters. It's about, well, what the question says. There's no right or wrong answer, it's about a personal choice. I figured it goes without saying that it's hard to know if you've never been in that position yourself, but how could someone who watched that episode not wonder what they would do if they were Thirteen? I can understand both positions, getting tested and not getting tested, but in the end I voted that I would.

Ugh, that's just wrong. How can you judge? Many years ago I watched a documentary on genetic testing and they focused on two people who had parents with Huntington's (they weren't related to each other). The documentary talked about how some people who choose to be tested say it's because they want to be able to plan their lives, one way or another; for example a person who knew they had it may opt for an athletic career which would be completed before symptoms set in (one would hope). They interviewed the people being tested beforea and after but didn't show them receiving their results, being before the era of reality TV. One tested negative and was obviously happy and relieved, the other tested positive and spoke to the doctor about how to handle it. I wonder she regretted having the test done?

I chose the "yes" because I must know everything, I can't imagine myself not knowing. But I do understand if someone would choose to ignore the answer (and maybe in a real situation, who knows what will be my reaction, anyway?). At the end I think it's about hope, no matter if you chose to know or not. It's about to live your life the best way you can, not because you know you're gonna die (we're all gonna die, after all), but because the knowledge and the certainty that your time is limited could make you do extraordinary things.

That's a really hard question. I can certainly understand both decisions. Personally, I would have to know. I am a very obsessive person, if I didn't know I would let it consume my life with worrying about it. Even if there's bad news, I have to know about it. To me there is nothing worse than not knowing. If I didn't know I wouldn't be able to put it out of my mind, I'd rather know and then try and deal with it.

I would not want to know. And I think it's pretty much for the exact reason that Thirteen gave: most normal people don't know when they're going to die and I'd want to be as normal as possible. Of course I would get tested if I was planning on having children. My aunt was recently diagnosed with Huntington's: she went from normal to living, sedated and restrained, in a nursing facility in less than two weeks. My cousin had no idea her mother's side carried the disease - her grandmother had died of it but my aunt hid that fact from everyone. Unfortunately, my cousin already has two little kids. Now she's trying to decide whether or not to get tested, and what that will mean for her and her kids.

I think I would get tested... because I function best knowing what is ahead. Not knowing would leave me with a sense of constant dread. Last year, I had a couple very strange mental blips, in which I experiences temporary global amnesia. And they found "something" on my MRI. The waiting was the worst, because I felt like I was in limbo. I could not make any decisions about how to handle the situation because I did not have the information I needed. It turned out they could not find anything conclusive... but in this case, no news is basically good news. (And they did find a brain... there were members of my family who doubted I had one.) If I knew my time of good health was limited, I would forget about saving money for my retirement and travel more. I would invest in very good health insurance and disability insurance. I would take that balloon flight I never seem to have money for, and not worry about whether social security will still be solvent in my old age. In short, I would live life to the fullest now, and not worry so much about the future -which I probably should do more of anyway - but I have my parents protestant work ethic in my DNA. I don't think I would choose to go to medical school. A lot of time and effort invested for what might be a short term payback. Or, if I did, I would probably go into research on HC in hopes of finding something useful to help myself and others.

I had this discussion in a class this summer, and I said it then and I'm saying it now - no. Life is short, life is a gamble, and life is an adventure. If someone wants to have the test, then go ahead and have it, it's your personal choice. But in the end, I'd rather ride life's ups and downs than to worry about the results of a blood test. If I started to have symptoms that matched HC, then I'd get tested, otherwise, no.

I would get tested but I don't think it would change anything for me and I find it hard to swallow that 13 based her whole drive to do things on not knowing. My family has this unfortinate habit of dying young...a person in my family making it to 70 is pretty damn rare. I know this I know I will probably die young. I do what I want to do but I don't do it because I know I have a shortened life expecetency, I do it inspite of a shortened life expectency. The only thing that testing does is tell you yes you will or will not get sick, it doesn't change how you approach life Does this make any sense?

Yes, I would want to know, but I really not so much for myself but for my loved ones. It would be incredibly difficult, because I tend to bury my head in the sand as deep as I can.

I don't know how a young woman/man with a known family history of Huntingtons could plan or live life without knowing. Personally I would be terrified that I carried the genes and might pass them on to my own children - thereby condemning them to a horrible early death. How could you marry someone, plan a family and not know? If you have the gene, and still want children - adopt, etc but let these lethal genes die with you. Granted, life is uncertain without this family history, but in this day Huntington's is a knowable condition.

Well, it's a tough call and I would respect a person's wishes either way, but personally, I'd want to know. Both my parents died at a very young age (the age I just turned Tuesday) of differing diseases. My siblings have made it past what we refer to with our gallows humor as "The Death Year" - I'm the last one who hasn't gotten through it. I've had some very bad health scares in the past 15 years, so it brings it home even more. I've always lived under that cloud and realized that time is very short so I've been more likely to do and try things I might not be inclined to do if I had a no experience with these things I've always thought "If this was all the time I have, would it be enough?" The answer is always no, but I've been determined that if this was all I got, I was going to make it memorable (for me and everyone around me). Someone once said to me "We have our time. Use it up. Wear it out. That's what we're here for." I've taken that to heart and tried to live as fully as possible. I would worry in 13's case that the fear of not knowing might crush her. One day she would be sick and possibly regret some things she wished she had done. If she knew, she would have a chance to come to terms with it and perhaps push herself to have some special experiences before she was unable to.