I sit with my mouth hanging open. Somehow, I had missed the aunt's sterilization story, and the circus story is just too much to bear. I have no idea what I might consider too great a genetic risk to consider getting pregnant. What a tough and touchy subject, huh? I so agree with the idea that there are too many "perfect" people out there who are totally miserable and don't contribute to society, while millions of people with all kinds of physical, mental, and emotional differences add so much to our world. The desire of the general population to have everyone look and seem "normal" is frightening to me. How dull and boring and totally useless that society would be.
You always make me think. Thanks for that.

Oh sure. It is Sunday night, a good time for the "easy questions". The answers I give, for the most part, apply only to me. Not as what I expect other people to do.
I worked for a year, when I was a younger woman, as a volunteer counsellor at Planned Parenthood. The policy there was that no matter what the reasons were behind the choices that a woman made about reproduction, or how we might feel about them ourselves, our job was to support her in that choice. It is something that I struggled with and still do from time to time but try very hard to adhere to.
At that time - the issue was woman having ultrasounds to determine the sex of the fetus they were carrying and then choosing to abort if it was not what was wanted.
1)When is it eugenics?
When it is government policy, when decision making is taken out of the hands of the individual, when there is no real choice.
2)I have no idea. None.
When we first had children, my husband talked about a guy he knew at work who said once at lunch that it was the responsibility of people like himself and his wife to have lots of kids so that there would be lots of decent, good people to try and make the gene pool better. Ick.
I think that we need all kinds of people to make the world go round.
3)I would say that I am a carrier of depression. Alcoholism runs rampant on both sides of my family (I would describe it as self medicating behaviour) and both my brothers and I have severe to quite severe learning difficulties. High functioning Autism seems to run in my husband's family.
At one time I would have said that yes, it would have changed the way I approached family planning. Both my children have challenges that I wish I could have spared them.
But...even if I could have spared them those challenges who is to say that I could spare them any others.

Whew. I'm exhausted. The show sounds like it was really interesting. I will also, respectfully echo much of what YT said above. Right down to you make me think!

As a matter of fact, I think I'm going to use this post to talk about eugenics with my kids tomorrow. (I homeschool I take all opportunities I can!).

1. When is it eugenics?

When societal pressure reaches the point where doctors and other families openly judge you for having children with genetic diseases. When having a child with a genetic disease, despite being forewarned, is considered child abuse.

2. What are genes worth? How much should genes count? When?

It's such a minefield. I mean, if Casey's parents had known ahead of time that they had a high risk of having a CF baby, would they have reconsidered? But he's a good guy, and is doing things to help others. He starts today as an assistant special ed. teacher. To say that he "shouldn't have been born" is ridiculous, and horribly offensive.

On the other hand, we all were lucky. He's healthy and didn't die in childhood. If he had, and his parents had wondered if they would have been happier not having had a child who would have died, I couldn't judge them for that. Losing a child is so horrific that I can understand wanting to try to keep it from happening, and one way of doing so is to not deliver a baby with a fatal disease.

I have to admit, there are families in some of the CF communities who have multiple children with CF, and some of the teen posters have already lost their siblings. One girl said something about how hard it was to watch her older sister die and know one day that it would be her, too. Probably she doesn't wish that she or her sister had never been born, but it's an awful thing to have been through. And I think about all this when it comes to decisions about starting a family.

3. Other.

Even if Casey were fertile, I'd want to be tested first to see if I'm a carrier. I think that if I were, I'd ultimately want to go with our original plan of using a sperm donor. Why? Because, on a practical level, it's not good for two CF'ers to live together, as they can cross-infect one another with various bacterias. And two, it's hard living with the knowledge that my husband has what is still considered a "fatal" disease. It may be selfish, but I don't want to willingly risk the pain of having a child with the same thing, and I can't imagine how I would go on if I lost both of them to it. I can't imagine what it would be like for our child to lose his/her Dad to the disease s/he has.

The whole thing is unbelievably sad to me.

I don't want to support eugenics, but I don't want to do something that could be overwhelmingly tragic for my family and myself, either.

Gawdessness--haha! Yes, well, it's the weekend; what else were you doing with your grey cells? I, too, fully support a woman's right to make choices around her reproductive life. What troubles me is 1: Not all women are exposed to the same "choices"--no doctor will carefully draw a woman into a room, sit down, stare her in the eyes and say, "the fetus tested positive for a gene correlated with artistic skill. Do you want to abort?" and 2: We seem to have decided, on a societal level, that certain characteristics make some fetuses more "abortable" than others, less desirable as human beings--and how those characteristics were selected, and why, is very very troubling to me.

Abbey--thank you for your input. I thought of you both times yesterday while watching the documentary--there was also a couple who had a child with CF and who were undergoing pre-implantation genetic diagnosis to ensure that any future children they have will not be affected. I have so little experience with it, though--and it's so obviously different from having a genetic difference that has no health implications whatsoever--that I didn't even want to try to talk about it. So I'm very glad to see you here.

I don't even want to pretend that I would have any idea of what I would do in your situation. I don't.

All I know is that in my situation, my genetic disease (diabetes) is going to cost the national health care system a whole lot more than Frances's short stature, and yet no one has ever advocated that I undergo genetic counseling to determine my risk for carrying a child predisposed to diabetes. Only dwarfism. That absolutely smacks of hypocrisy and eugenics to me: that a person with a serious life-threatening chronic illness who "looks normal" is considered more desirable societally than my sweet, healthy, perfect tiny girl.