So, with our knowledge of humans today, we have discovered countless genetic diseases. One of those is Huntington's disease. It is a dominant disease, so only one of your parents needs to have it in order to transmit it to you. So, where's the ethical dilemma here, you may ask?
There is currently a test that can determine whether or not an individual has the gene for Huntington's disease. Since it is a dominant disorder, though, there is a 50% chance of your children getting the gene if you have it. Plus, since the disease has a late onset, most people have their children before they even know that they have the disease. So, if you get tested in say, your early 20's, and find out you have the disease, but still want to have children, what should you do?
My boyfriend went to get genetic testing done a few months ago, to make sure that he wasn't a carrier for any significant diseases. He told me that the company he went with almost never releases the results of the test, because the results could cause a family to refuse to allow their child to marry you. Instead, they keep everything on file, and when two people want to get married, they compare the two results and tell which diseases the children will be likely to get, but not which person would be responsible, if it is only one. A nice way to avoid such an ethical dilemma.
But say that you got the results and found out that you are going to have Huntington's. Should you not have children in order to spare them the pain that would result from having the disease (since they are predisposed to having it? Should you have to tell your spouse you have the disease before you get married, which could lead to no marriage at all?
That leads me to my second ethical dilemma. We are quickly coming to the point where we can screen embryos for genetic diseases, even before they are planted into the womb via in vitro fertilization. So, is it ethical to remove those embryos that will have Huntington's? Or how about genetic screening once the child has started to develop in the womb? If the child is going to have Huntington's, is it fair to make them live their life knowing that when they enter their 30's, 40's, or 50's, that they are going to have to live in a nursing home for the rest of their life?
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I won't get into the ethical conflict in regards to well, pretty much anything you mentioned except for being aware and making the choice to have children. I'll do this simply because the others would probably be a couple of blogs on their own. Though I know adoption can be a long and expensive process and many want to have their own children, not just children, I feel like there are options out there for those who know they are carriers of the disease. I think, and this may sound harsh but I feel it is the best way to put it, that is is a little selfish to decide to have children knowing that there is a good possibility you will pass on something so painful to your children. I may think differently if it was me in the situation, but I doubt it.
So, if you knew you were a carrier before you got married, should you tell your boyfriend/girlfriend that although you do want to have kids, you think it's selfish to have them naturally, and that you plan to adopt instead? Or do you think you should seek ways to screen out those embryos, so you can be assured that any natural child you have will not have the disease?
And what about if you don't know you're a carrier until you are already having a child (in the womb), and find out that the child has the disease as well?
I don't think that you can pick one and state your opinion on it without taking the others into consideration.
~C
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I wouldn't want to know if my unborn child has a disease. Obviously there are some cases where it is clear they have a disease or they need treatment while in the womb to help them and in that case you would know, but if there were an optional test for a disease I wouldn't take it. Just have the child and learn as you go, people have done that for years and why create additional stress by worrying?
This is very simplistic but my basic view. Don't make a designer baby and, unless it's life threatening, don't screen for diseases, you'll find out eventually anyway...
~Jax
"Everyone has the right to their own opinion, I just prefer mine."
Ok, let's look at it from another point of view. Say that during the amniocentesis, the doctor discovered that the baby had the gene for... breast cancer. Something fairly innocuous, but could be life threatening. Does the doctor have the moral obligation to inform the parents, regardless of whether they knew this test was run or not?
~C
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Of course I would want to know if my children were going to have a serious illness. It would be hard, but I would probably decide not to have chilren, because you can adopt. Also, we already have screenings that allow us to see if our embryos or fetuses have certain diseases. I would never put my child through the pain of living with a deadly illness. And I don't think you should have to tell your partner, but I think you should know what their opinion is on whether they would want to have kids in that situation, and what you two would do about it.
--The greatest thing you'll ever learn is just to love and be loved in return--
Well, first consider if you are pro-life and if you are that answers all of your questions.
"Our politics are our deepest forms of expression, they mirror our past experiences and reflect our dreams and aspirations for the future."
No... it doesn't. My questions were if you had Huntington's, would you still have children, knowing that your children have a 50% chance of getting Huntington's as well? Would you tell your spouse? That has nothing to do with whether you're pro-life or not.
~C
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Pro-Choice.. I figure to each his own.. I don't know what you have been through.. if you aren't directly effecting me.. then do what you feel you need to do. I do have limits.. such as little girls who just sleep around.. but that is for another blog.
My point is this is an individual decision. Because I was a young mother.. I know what it is like to have alot of hard decision thrown at you at once! Decisions like that can be tough. I personally wouldn't even do the screening.. I don't like to live in fear that way.
We can all sit here and say what we are going to do, but the truth is.. when we are in certain situations... ideas change. Circumstances can change how you think you feel about something. This is a thing you can't decide about until the challenge presents itself to you!
I understand that and I somewhat agree. It's hard to decide a solid answer because ethics change from region to region. So it would have to be a decision made by that person, like you said above. And thank goodness women have a choice.
"Our politics are our deepest forms of expression, they mirror our past experiences and reflect our dreams and aspirations for the future."