Designer genes

What are the ethics of genetic screening? And how would testing affect your pregnancy choices? Table Talkers sound off.

By Salon Staff

Published October 6, 2006 9:29AM (EDT)

Social Issues

Ethics of Reproductive Technology

zollydog - 01:15 pm Pacific Time - Oct 2, 2006 - #88 of 139

There is no way to fully accept the unbidden/not selected other than not bothering to pay any attention to one's reproductive situation in relation to the rest of your life. Other than that you ARE selecting -- either by choosing an existing child with certain qualities, having a child while making certain determinations which the author identifies, selecting a partner whose characteristics you appreciate, or simply making the decision not to conceive while engaging in high-risk behaviors or with certain known genetic issues. So what's an acceptable level of selection and where is the line drawn?

I suppose this is the place where the argument gets interesting. I have some genetic issues and some issues that are related to the circumstances of my conception. So I relate to some extent to the idea that selection is a bit of an insult to me and to people like me who are less than perfect. But not really -- and this ignores the fact that I wouldn't know if my parents chose not to conceive me. And the world wouldn't notice, either -- as is the nature of potentiality. When lost it's not gone -- it simply didn't come to be.

Anyway, I'm torn on this issue. I'm equally torn on efforts to prolong life.

Sarie - 04:44 pm Pacific Time - Oct 2, 2006 - #90 of 138

One thing that I always come back to when we're talking about selection and genetic testing is the cultural implications of that selection. And the culture that creates the pressure for parents to make the selections they make.

One argument says that the parents know what they themselves can handle -- but they don't necessarily know until they're in that position -- and if the culture is devaluing the existence of the child-that-might-be, all the society is doing is encouraging people to never find out.

That argument also suggests that the decision the parents make exists in a vacuum, which clearly it doesn't. For example, think of a couple who have a wanted pregnancy, which they've probably told people about: their family, their friends, and so on. Now suppose the couple finds out that their kid will have Down syndrome or spina bifida. If they terminate (and these days most people do when they find that out), what does that do to their attitude, their family's attitude, towards actual people with Down's or S.B.?

I've posted before about my experience while working at a medical office of seeing would-be parents who terminated because their kid would have had the same disability that I do. It wasn't just that I felt insulted (although certainly there was an element of that), there was an extra layer to it -- a value judgment that goes beyond simply being personally insulted, and actually has more to say about our society than it does about individuals.

It doesn't necessarily matter that the kid they didn't have doesn't know to be offended -- it's that those parents (and whoever they told about their decision) are going to have to deal with real people who represent what they didn't want for their kid. Even if those parents claim to be enlightened in other ways, it's obvious that they aren't -- think along the lines of the parents who say that they're not racist or not homophobic, but are horrified when their kids marry interracially or turn out to be gay ("they're fine as long as they're not family").

It's a difficult issue to even discuss properly, because on the one side it's too easy to start sounding like a pro-life fundie, and on the other it's dangerously close to implying "genocide is fine as long as it's all in the family" -- both of which are, of course, huge steps in the wrong direction for society (as I see it, anyway).

TartifletteDeux - 01:32 am Pacific Time - Oct 3, 2006 - #96 of 138

Let me relate a conversation that came up just a couple of days ago. A mom of a kid in DS's class and I were talking. She just had a lovely baby girl, the last of four she says. Somehow the topic turned to the testing she had done, which is now standard in France (maternal blood markers for trisomy 21, aka Down syndrome). She said, "You know, I had a long talk with my husband about it, and told him all about Max and how your family looks so happy, that I wasn't sure I would have done an amnio if the markers had come back positive. I don't think that having a Down's baby would be so impossible."

To be honest, my heart sunk to the bottom of my gut. I started to tell her, "But kids with Down's have a lot of medical issues; there are serious health issues there, not to be taken lightly; there's a whole spectrum that goes from not too hard to handle to heartbreakingly bleak!"

On the one hand, it was affirming to see that our family looks happy (and we are) from the outside, and I was proud of that because it is true -- we have had our problems, but our kid is happy, we're happy, we've got something that is "normal" now to us. On the other hand, I felt responsible for giving pause to this woman, who doesn't know what it is to pray over a kid's possible death bed, or be constantly confronted with hairy medical issues and have one's life whipped out from under her like a rug. You do recover, but from there to choosing it? Very, very hard.

If I had a do-over, who knows? If I were pregnant right this second, I would have, as I said, a very hard time choosing. I had an abortion when I was young and stupid. It was not the same thing then as it would be for me now. I'm pretty sure that I would not choose to bring a kid into the world who would be as sick -- physically ill, at times near to death, with a life expectancy which remains far less than average but is increasing all the time due to better protocols, with long, grueling surgeries in the near future -- or, my bête noire, sicker than his brother. My husband would not at all choose to have another disabled child. He doesn't want another kid, period, right now.

It is a judgment call, one that I would never, ever allow myself to make for any other parent, if we're talking serious conditions. Choosing hair color or eye color, what a dumb way to use the resources we have. There are thousands of serious diseases with genetic origins that can't yet be tested for (DS's marker was discovered in 1997), and we waste our energy on selecting for blue eyes? It's disgusting to me.

This is all jumbled, sorry. I know my feelings are contradictory as well.

Another thing -- I have never had a single person assume that I would keep another sick baby, or carry a pregnancy to term without being tested. Not one. Every single (nosy) person who has ever asked me if we were going to have another has also asked if there was a test to find out if the baby was sick beforehand, and when I said yes, it was nearly always followed with, "Well, that's good!" I don't know how to describe it other than a slap in the face to my son.

Just as abortion laws are being reviewed by mostly men who will never be pregnant, thus never truly understand the issue (IMO), reproductive ethics laws will be made by people who have very little idea what they are dealing with.

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