@JLeslie I’m not sure about the genetics of it, since during the course of my life I have been listed first as a carrier, and second and having the disease, since I have a physical difference as a result of it—the difference that made it impossible for me to have biological children without an operation to harvest sperm (since I don’t have the plumbing necessary to deliver sperm where it needs to go).
Whether you count me as having CF (and I don’t know what the current medical opinion is) or not, if I were to attempt to create a new life with a woman who also has the Delta F508 mutation, then there would be a pretty good chance (25%, I think) that we would have a child with full blown, classical CF—lung problems and all.
My wife doesn’t have the mutation, so that wasn’t an issue, but even if she had, the only way we could have children was through IVF. IVF allows you to test embryos before replacing them, and thus you would not need to replace any embryos that had full blown CF.
But I no longer have the same attitude I used to have about suffering and the value of lives that many of us might call disabled or substandard. I no longer believe it takes money to have a decent life, even though I am fortunate enough to be well off. I no longer believe I know what a “decent” life is. There is a good chance that people would have looked at my genetic structure, seen the genes for CF and bipolar disorder and said, “Nope. This one has no chance of a decent life.”
I beg to differ. Mutations are differences, but they are not wrong and I don’t think it is helpful to label them as “bad.” Nature experiments. Humans have learned from nature that we experiment for a reason. We can not prejudge the results of the experiment because there is no way to predict them.
@Mariah As to suffering… I have no idea how to judge. Who is to say how much suffering is too much? There is only one person who can say, in my opinion, and that is the person themselves, and even then, I don’t know how many would really, truly wish they had never lived. In any case, we can’t know in advance. Only the person can make that decision for themselves.
We may think we are being empathetic and caring when we try to make the choice to prevent a life of suffering. But I think that’s bullshit. If I want to prevent a life of suffering, it’s not for that person’s suffering, it’s because I don’t want to deal with it. I don’t want to be responsible for the child. It’s going to take too much out of me. Let’s be honest here. And I don’t have a problem with that. I don’t want a child with CF because I don’t want to put myself through that. If I had one, I’d deal with it and try to make my child’s life as fulfilling as I could. But I’d rather not have to deal with it.
I think that’s a perfectly legitimate choice to make. I think that’s why people have abortions. They don’t want to cramp their own lives. It’s not really for the child. The child doesn’t exist. I’ve participated in a choice like that. But let’s not say it’s on the behalf of the child because we have no idea and can have no idea what that child might do or feel.
My own experience is that I am grateful for every moment of life I have. And I have been in such suffering that I did not want my life to go on. I live with the knowledge that kind of depression could come back. It makes every non-depressed moment I have that much more precious.
In a way, I guess I can count myself as a “survivor,” the way cancer survivors emphasize their success at staying alive. I’ve never really thought of myself that way because this stuff—bipolar disorder, a near-miss with CF—happen in a much less dramatic way than cancer occurs. I didn’t know I was in a fight for my life. And really, whom among us does know? Yet aren’t we always in a constant fight for our lives?
I’m unwilling to make these judgments any more. I’m unwilling to tell people, even if they are brother and sister or parent and child that they should not procreate due to health reasons. I don’t know enough to be able to predict the future in a way that I would be willing to let myself play God that way.
I’m perfectly happy to suggest there may be psychological problems in such relationships. I’m willing to admit that the idea of such liaisons makes me very squeamish. But that’s a knee-jerk reaction. It’s not a scientific reaction. Scientifically, I just don’t have enough certainty to be able to set the boundaries or make the judgment about what kind of life should never be lived. I can’t do it. And I think all this incest taboo is based purely on gut and really has absolutely nothing to do with science. Even if science could predict the future with such accuracy, the decision is still a judgment based on non-scientific factors. Science can not tell us good and bad. Those are purely human judgments.