Wow, that's a very powerful message. I've never thought about genetic counselling in those terms, but you make a very compelling case.

I've recently discovered you blog, and I was tempted to comment on your previous post when you discussed debating whether to have a child, as you didn't want to bring a child into the world who had to face so many obstacles, but was afraid you might not take my comments as I intended. However, this posts suggests otherwise, so I will throw caution to the wind. ;-)

My exposure to the queer community causes my ears to perk up, so to speak, whenever people mention worrying about making their child's life more difficult by virtue of the child simply being who they are. Many many parents whose children come out of the closet say things like "Oh, I love you the way you are, but it makes me so sad that you are making life more difficult for yourself"/"The world will make your life more difficult"/etc.
This, to me, belies the parent's thoughts about what things are and aren't worthy of effort. Is living ones life true to one's nature worth some difficulty? Is that more or less valueable than other difficult things, like, say, acheiving a Ph.D? Or being the only woman in a male-dominated field? Etc. Imposing an exterior determination of which difficulties are and aren't worth experiencing is judgemental. Especially when the person making these judgements hasn't experienced these difficult circumstances for themselves.

Now, arguably, diabilities are perhaps a different domain than sexual orientation - though that is recent.

Anyways. Appologies for the overly-long comment, but yet - this does make sense to me, too.

It's eugenics. It is. Heck, Gattaca called it correctly. I have poor vision (astigmatism) and so does my husband (near-sighted). I'm sure that in the future, they'll be able to test for the genes that cause poor vision and discourage parents from having children with those genes.

Frances is perfect. Her life will contain more hassles than if she were of average height. She is also a girl. She has many more hurdles to jump than if she were a boy. She's fair-skinned. She has to be more careful in the sunshine than if she were olive-complected.

You are wonderful parents. The world NEEDS more Franceses.

Yeah, you know, the thought of people of color being "counseled" not to procreate because of the risk of their children encountering racism is one I wondered about, too. How much of a stretch is that? Liz is so right. The world is sorely lacking in children like Frances, who are bright, and sweet, and adorable and whose parents are showing them, by example, how to make this a better place to live.
Thank goodness for you and Erik and that beautiful toddler (er, baby)!

Sure that is a form of eugenics. Absolutely.
And it is also falls into the realm of personal choice.
I described eugenics as being defined as government policy. I did that because it means that there is no element of choice that it is so much the norm that it is enshrined and that it is the norm. There is no real recourse that would not be outside the law.
Should we look closely at what genetic counselling is, how and why it is done? Yes.
Should we tell pregnant or hoping to concieve women what choices to make? In my opinion - No.
Your point about cultural values is a good one. And a large part of why I feel that it is the job of legislators to do what is right not what is popular.
Of course that opens up a whole other discussion of what right would be considered to be and by whom.

This makes me so sad because you are so right, it is eugenics. How terrible that we can't see past out own prejudices. Sweet Frances is perfect, just the way she is.

It is eugenics. Without even getting to the genetic counselling, I think it is sad how many women over 35 consent to an amnio, putting themselves and their baby at risk "just to be sure". Of course, the people with differences and disabilities (Fragile X, cerebral palsy -not genetic, I know-, Downs, spina bifida) that have touched my life are so important to me, I can't imagine life without them.
Of course, it can be hard, hard work to parent a child with a difference. But the fruits of those labors, for so many families, are unending.
A good friend adopted a "special needs" girl from Romania - where that child would be without her mom and dad to advocate for her, I shudder to think. And the love she brings to their lives - well, they wouldn't trade her for the world.

I don't think you are crazy. In fact if I was the one wielding the stamp, you'd have a big red SANE on the back of your hand (Simpsons reference there, sorry!).

This post was, as always, thought-provoking, and you are quite right, any sort of conscious organization of the gene pool is indeed eugenics (by definition and by practice), no matter how it is achieved.

And I think the 'subtle' methods you highlight here are worse for their insidiousness, because the average person* does not question them and their internal logic 'makes sense' until you see the full picture.

It seems to me that nature removes unviable genes all on its (her?) own, we can't decide what is 'unviable' because we don't know the flip side of these 'undesirable' characteristics. What is the human gene pool losing by weeding out these traits?

If we eliminate variation, we are breeding ourselves into oblivion.

When I followed one of your links I was very disturbed to discover that many early members of the women's movement were advocates of sterilization for certain groups of people. I have trouble admiring Nellie McClung for her work on behalf of women if she was also a proponent for eugenics.

*I, for instance, hadn't really thought about the meanings and ramifications of genetics testing until I read this today.

parodie--thanks for your comment, and welcome. I'm glad you stuck around and decided to throw caution to the wind. :)

I'll admit that I do worry about that--that her life will be difficult because of other people's prejudices--but I absolutely do not and never have wanted to change her. Not a bit. I wouldn't 'cure' her dwarfism even if I could. I will shamelessly admit that I would change the world, if I could, to guarantee that there would always be a toilet she could use, a door she can open, a checkout at the supermarket she can reach, and so forth. And I do worry about future children--and you're probably right about that--but in my defence, I'll add that sexual orientation is hideable. (I'm not advocating that as a solution to heterosexism, only noting that people in a heterosexist society have the option of going in drag, should they wish to, and avoiding much of the consequences of prejudice by doing so.) Frances cannot hide her size.

I wrote about that a while ago, I remember--how before Frances was born I was relatively confident that I could do a good job because I value difference (or thought I did) and because I'm used to being different myself--smarter than most, diabetic, a witch, etc. But what I never counted was that I could always put myself in the closet. I could pretend not to be different when I wasn't willing to pay the cost of being different. Frances won't be able to do that. I don't know that it will make her experience any better or worse, necessarily; but I do think it will be so much different than my experience with difference was, enough to make my experience pretty near useless as a guide in parenting her.

Gawdessness--I agree with you. It does fall in both realms. It's chilling to me, though, when I read a journal abstract that says they need to offer more genetic counselling and pregnancy termination services to african-american and latina women because their rates of live T21 births are higher than that for white women. I mean. !!! YIKES. I agree with you that all women should always have full reproductive choice--I would never want to take away a woman's right to choose, regardless of whether or not I agreed with her choice. It is too fundamental a violation of human rights. What bothers me isn't that individual women are making choices I don't agree with; it's that as a society we're trying to encourage certain women to make certain decisions that just so happen to fundamentally resemble those mandated by old eugenics legislation. We gasp and flutter our hands in horror when other cultures decide that girl fetuses are more abortable than boy fetuses; and yet most people don't seem to be bothered that our own culture has decided that T21 and dwarf fetuses are more abortable than chromosomally normal or tall fetuses. It isn't that I want to stop women from making those decisions (definitely not), even though I don't agree with them. It's taht I don't want our government and our policy-makers to keep getting in the business of reinforcing the idea that it's more ok to abort this fetus than that fetus.

Chris--that is such a good point--that the gene pool needs variation in order to survive. BTW, did you know that there is more genetic variation in the average chimp troupe than there is in the whole human species? Apparently a near-extinction for humanity in the past reduced our genetic pool to such an extent that we have far less variation than many other animal species. That's scary. And yet we want to narrow it more. And yes, that link was distinctly disturbing.

Halloweenlover, YT, Liz--thank you.

Elsimom--thank you, and welcome--I don't think you've posted before?

Another thought provoking post, Andrea, and some thought provoking comments too. I have the slightest bit of experience with this, since when I was pregnant with my son, I failed the AFP exam, and the level 2 ultrasound showed several soft markers for Downs. They gave me a 1 in 14 chance of having a "normal" baby. It was a pretty tough time in my life but one of the strangest things was the assumption by all the medical personnel that I would abort the baby. Which I definitely had no plans to do. Then when I was pregnant with my second, I refused the AFP and again I got all kinds of flak from doctors suggesting that with my history I needed to know what was going on, and no amount of insistence by me that I wanted to carry the baby to term was accepted. IN the end, I did take the test, and failed again. Both times it turned out that my children did not have some genetic anomoly.
You are so right that genetic counselers are there to tell you what "risks" you have, what "problems" you may encounter if you decide to carry to term. It's all very solemn and scary. I never thought of it in terms of eugenics, but that's exactly what it is. And parodie's comment about valuing some "difficult" things more than others got me thinkng too.
Sorry for the long-winded comment. I'm so glad Frances is here, and your daughter, and perfect in every way!

I posted about getting a kitchen stool before, but this is the one I saw in the SkyMall in-flight magazine. It's called a Learning Tower and seems to be pretty sturdy and safe.

Aggggghhhh.

Here's the website:
http://www.skymall.com/webapp/skystore?process=prodDisplay&action=&pid=69740064&catId=10323

This is becoming a loaded topic for me. Baby H is perfect in my eyes, yet her bio parents did not want her due to her "condition". Had they had testing and KNOWN she would be born with T21, would they have aborted her? Would they have taken her chance at life away from her? She may never win a nobel prize or raise a family of her own, but who's to say? I just don't get how I could love this little already, and yet they didn't want her because of a "condition".

I just don't get how anyone could look at Baby H or Frances, or any of these kids and feel as if they should not have been given the chance to be born.

I just don't get it.

Thanks, Amy. :) I wish I could say I was surprised, but the justification for the tests is that the cost of the test is far less than the cost of medical and social treatments for live births, so if x tests equal y abortions, they're financially ahead--it's a whole mindset.

Liz--thanks for hte link. I don't know why that html code won't work in the comments--it's frustrating, isn't it?

CJ--me either.

Great post.

I remember a discussion on a parenting board I used to follow about a Deaf couple who had chosen their sperm donor to assure that their child was also born Deaf. People practically accused the couple of child abuse - to *want* to "bring a handicapped child into the world" (as several posters said) was somehow inflicting some awful life on an unwitting child.

On the other hand, there are a handful of genetic issues that I can see the point of such counselling... Tay Sachs, for example. But there seems to be a slippage going on between counselling for fatal and painful genetic disorders and counselling for something more "cosmetic" (for lack of a better word).

Andrea, I agree with you wholeheartedly.
I think our two viewpoints are not far apart at all.
Just as I feel no one should be pressured into continuing a pregnancy, no one should be pressured into ending a pregnancy.
This is a complex issue.
Personally I find the "journal abstract that says they need to offer more genetic counselling and pregnancy termination services to african-american and latina women because their rates of live T21 births are higher than that for white women" as something that borders on being hate literature.

I don't have anything profound to say on this subject, except to point out that if you and your spouse are both Ashkenazi Jews, it's pretty hard to get through a pregnancy without going through some genetic testing. Tay-Sachs, as Sara says, and a few others. I remember the anxiety we felt as we waited for those results. And I'm sorry that you've had to go through it. But there shouldn't be any doubt that Frances is absolutely perfect. And if you need us to point that out to any genetic counselors, we would be perfectly happy to do so...

Gawdessness--agreed. It made me feel sick to my stomach when I read that.

Sara/Phantom--I think it gets a lot more complicated when you start getting into genetically-based painful/fatal illnesses, as Abbey brought up in the TV post below ... and I have no experience with that, so I don't want to venture too many strong opinions. One of hte experts in the documentary said that using our knowledge of genes to cure an individual who has CF, for example, would be an amazing thing--but she's not so sure about using our genetic knowledge to prevent people who might/would have CF from being born.

It's such a huge grey area. I really have no idea what I would do. And it doesn't escape me that I have a condition that is genetically-based that will kill me someday. For some reason it seems to be widely accepted that diabetics shouldn't be "bred out," but that we should treat and cure diabetics instead. It isn't the same; the disease isn't anywhere near as debilitating and the treatment isn't as complicated. But if we focus on breeding the gene out instead of treating/curing the people who are among us ... I don't know. Where does that leave us?

But, as Sara said, it does seem pretty clear that we've blurred the line between conditions where the quality-of-life issues is innate, as in a disease, and where it is dependent on social acceptance vs. prejudice.

Phantom: Thanks. :)

I'm doing research for one of my classes at school and came across this blog. I'm seriously considering going to school to become a genetic counselor after graduation. I have interned with a great group and feel like it is something I would not only enjoy but would be good at as well.

Before you judge me for my career choice, I feel like there are some things that should be considered from the other side of the coin. First, if a genetic counselor or any other health care professional was encouraging any one to get an abortion, then you should exercise your autonomous rights and find a new doctor. That is unprofessional, not to mention unethical and immoral. Second, the way health care works these days, whether government or private health care, costs must be minimized. This includes "prescreening" those with family histories of genetic annomolies for further testing. Genetic screening for any disorder is almost always offered to every pregnant woman. However, it is more cost efficient (a savings that eventually returns to us) to emphasize genetic tests for those those families that health officials know to have a greater chance of having a child with an identifiable disorder, which is mainly women with advanced maternal age and those with family histories. Testing assumes of course that the mother (and father) want their fetus to be tested, which leads me to the thrid point.

Testing is not perfect. There is a chance that every genetic test will give a false-positive (positively tested fetus born without T21, for example) or a false-negative (negatively tested fetus born with T21). While the chances for a false test depend on the type of test and the gestational period the test is conducted in, they are generally slim, but possible. Testing is also not possible for many disorders, problems, or quirks. In the original posting, you asked why children with learning disabilities, violent tendencies, cancer and heart disase aren't tested for. The answer is because there is no way to test for them, and this is not a "cop-out." The traits listed above do not have a single genetic cause or even multiple genetic causes that anyone is yet aware of. Also, the world one lives in plays a momentous role in the development of these problems as well, and reducing the cause to soley a genetic factor is most likely never going to happen. But, that is not to say that many gifted scientists aren't working on locating genetic sites where mutations could cause predispositions to developing these problems (for more info, look at the extensive research of hereditary breast, ovarian, and colon cancer, all having sites that have been identified as increasing the chances of getting cancer, but none actually causing cancer without environmental factors playing a role.)

Finally, I just don't buy that the practice of genetic screening is eugenics. No one is forced to be tested. No one is forced to hear results from the test. No one is forced to abort. Genetic counselors are not trained to practice any form of eugenics - they are trained to inform to the best of their ability. They want to make sure that you have the best and the most information about your pregnancy that you can so that you can make the choice you want to make. It is an inescapable fact that society looks down on those that aren't "normal." However, the goal of genetic counselors is not to perpetuate this practice, but rather to inform and educate the mother of every option for that unboron child. You argue that eugenics are practiced because children may be born with a condition that makes them look different. The main reason for informing parents that a fetus may have T21, for example, is not to warn them that their child may look different. More importantly, it is to inform the parents that T21 has several potentiall lethal traits that come with it, including heart and bowel defects that left untreated (they require invasive surgery to fix) the newborn may die within days. Physical malformations that may threaten the life of the child often accompany genetic disorders. Even "desirable" traits, like tallness, are associated with inherited disorders. For example, those with Marfan Syndrome are very tall (great if you are a basketball player, which many are), but they also can have enlarged hearts, a dangerous condition if you are an athlete.

My point is, like all professions, genetic counseling is not perfect. But they work in the best way they can to educate and inform others so that they can have the best most accurate information available,regardless of what the parents ultimately decide to choose.

I agree, but you know that already, as one of my children has a congential disorder and the other had a 50/50 chance of it as well.

You'd enjoy reading "Choosing Naia".

While our Genetics team were shocked that we would not abort - even if the tests were positive - our Geneticist wasn't. He's a Catholic with a brother with DS, and that's why he's in that field, not necessarily for those who abort - but for those who don't.

When asked WHY we took the risk of having another child "like your son" I would look at him and say "how could I not?" Some might think that's unforgivable, but they're too busy looking at the differences to see the value of the person.