At what point is it eugenics?

[Colorado Progressive]

I am pro-choice as it gets. My great grandmother died trying to give herself an abortion with a coat hanger at the age of 25, in the year 1924. Her 4 existing daughters grew up without a mom, so just to let you know where I stand!

I got pregnant willingly and by choice at age 34, baby due when I was 35. My doctor kept pressing me to get downs syndrome test, I refused. I said we loved this baby, even if she has Down Syndrome (we both sensed she was a girl, and she was). Apparently at 35 there is like a 1 in 300 chance baby has down syndrome. Not genetic, its from parental genetic breakdown. Age of parents is the issue. This pissed my doctor off, that I didnt give a fig.

In addition she kept saying I needed amnioscenteisis to rule out other diseases. This is where they puncture the embryonic sac to get genetic material from the baby. 1% of amnios end in miscarriage. Only .3% chance my baby had a disease. So I explained this to my doctor and she was all pissed, like I was dumb and didnt get it. Hello???? why would I get a test that is 3 times more likely to kill my kid than the disease being tested for? I thought doctors were smart.

My daughter was born just fine, but would she have been if I had amnio???

Bill Maher said recently that 98% of parents who find out their children have down syndrome abort. I am not surprised. The behavior of my doctor was so very "ÿou owe it to society to abort a DS child". I just wonder, are there any doctors/health care workers who can explain this? was it the money from ins cos paying for the tests or what? Seriously, do the math, how sad.

[madrchsod]

1. if you did`t have insurance

and poor you would`t get those tests. if you had money but no insurance then maybe...

[Colorado Progressive]

2. of course, thankfully I had insurance

How sad that so many americans dont have insurance

[Mythsaje]

3. My oldest son was born with Polycystic Kidney Disease...

It was only present in one kidney. If HE has a child, there's close to a fifty percent chance that the child will have the disease in both kidneys and a life expectancy of well short of a year. Eugenics or not, I would heartily recommend he and any future partner seriously consider getting those tests rather than being forced to watch their own child die in front of their eyes and not be able to do anything about it.

[Colorado Progressive]

5. we loved her too much when found out we were pregnant

would you really deny them alife, even a short life? I dunno, its a hard topic to discuss, but I would not have got rid of her for not being perfect. I love my daughter, and my son. No disease could keep me away. I am glad people can decide whether or not they can deal with it, etc.

[Mythsaje]

7. Consider the sheer terror and pain

that his mother and I went through before we knew exactly what was going on, not knowing if he would be condemned to death or would actually survive, I wouldn't wish that on ANYONE, much less my own child.

It would ultimately be their choice, but... :shrug:

[Iris]

25. yes. Isn't it sort of selfish to put someone through a life of misery b/c you loved them too much

to let them go?

[Donald Ian Rankin]

16. There is no "them" until somewhere in the second trimester.

The defining property of a "them" is self-awareness.

If you catch a terminal disease before that point, the question is not "is this person going to have a decent quality of life" but "is it a good idea to create a person who would have this quality of life", given that it is probably an alternative to getting pregnant again and creating one who may have a better chance.

[Orrex]

22. A good friend of mine

Gave birth to a baby with an extraordinarily rare genetic condition that has a 100% fatality rate prior to the second birthday. And typically those 24 months are full of pain, developmental problems, and round-the-clock suffering for everyone involved, especially the child.

When her son passed away, she admitted outright that it was, in no small way, a relief to know that his pain was finally over.

The only bright side is that the condition is pretty readily detectable early in the pregnancy. If she and her husband conceive again, the condition is 25% likely to show up again, with the same guaranteed death.

So if the test turns up positive next time, what will she do? Well, that's none of my god damn business, of course.

But I have a sense of what my decision would be if I were in that situation.

[Colorado Progressive]

4. very insured, money from us NOT an issue

[TheWraith]

6. I wouldn't call it eugenics. That's a pretty personal decision.

Not a doctor or healthcare pro myself, but... The argument against knowingly bringing a Downs baby to term is that many DS victims will basically be unable to ever live truly independently, meaning that the parent, other family members, or eventually assisted living organizations will have to help take care of them pretty much forever. A lot of parents might not be able to handle that, might not like the idea of imposing such a burden on their other children, or might fear what would happen to their child if they were no longer around. While some state care organizations are pretty good, others are hellish. Downs sufferers are also at a high risk for developing heart disease, hearing loss, thyroid problems, and Alzheimers.

As for the tests, it's simple medical psychology: better to have the test and know, rather than embrace doubt. Also, the number of amnios which actually result in a miscarriage is 0.06%, not 1%. (If your doctor told you otherwise, you might want to find a more competant doctor. Even the old, inaccurate figures were 0.5%.)

[Colorado Progressive]

8. thanks for a logical and scientific answer

but I still would not have given her up

[Iris]

26. And in the current culture we live in, it's not unreasonable to think that you could

leave such a child at the mercy of a heartless society once you are gone.

[Common Sense Party]

9. My son is severely autistic. 14, and he doesn't speak.

He's considered mentally retarded.

If my wife and I had known, when he was in the womb, that he would definitely be autistic and retarded, would we have chosen to terminate the pregnancy?

In a word, no.

In two words: HELL, NO.

He is a light of joy in our lives. Can he sometimes be a challenge? Yes. But, what kid isn't? He has taught us so much, and he is happy and loved.

[China_cat]

11. But if you'd known ahead of time

wouldn't you have been more prepared for the challenges to come? More time to do research, find support groups, schools, methods to make all your lives better?

[Common Sense Party]

14. More time to worry...

Perhaps so, but that wasn't the topic of this thread.

[xchrom]

10. while i don't believe that is technically eugenics --

sadly this issue can really boil down to economics.

i fear that for the diabled -- those born into families with money fair much, much better than those without.

i have a frend whose child has severe cerebral palsy -- and very little money.

i cannot describe to you the struggle she has.

life is not good for either her or her daughter.

[Katherine Brengle]

12. I think if the choice is made solely by the parents/mother, it's not

so much eugenics as a really sad decision.

If the doctors are PUSHING it, then there's a serious problem.

[iverglas]

13. that isn't really very good math

There's a 0.3% chance of the fetus having a genetic disorder entirely independently of what chance there is of amnio causing miscarriage. It isn't really logical to balance the two percentages against each other.

If the percentages were reversed, would that have meant "do the amnio" in your mind? I wouldn't think so. I'd think you were balancing the nature of the risks, not just the chances of it materializing.

Your doctor sounds like not the best communicator. The fact is that there are good reasons to consider having amnio, and terminating in the case of certain disorders, that she would have done better to bring to your attention.

Parents with adult Down Syndrome children now could tell you. They have devoted their lives to their child's welfare. They may have set aside their own aspirations to do this, in many cases not willingly. They are old. They are looking at dying before long. And their child will live longer than they do, and they are worried about what will happen to the child when they are gone. Down Syndrome children aren't just children; they're middle-aged adults too, and they commonly still need care then. There are things that people facing this choice need to be realistic and honest with themselves about.

On another point, I never like to hear the "light of my life" reason for not terminating a pregnancy when a fetus has a known serious defect. No one should have the purpose of his/her life defined as being the light of someone else's life. Children with severe disorders who live in pain may seem or be happy, but they are still living in pain and are still not capable of autonomy, of making their own choices. To choose to continue a pregnancy because someone else's disabled child has made him/her happy and one thinks the same will happen for one's self strikes me as not wise or fair.

On the main question, I agree that individual choices, where made without at least undue outside influence, cannot really be regarded as eugenics. Problems arise where the choice is not "free" in the sense that other options are not feasible: women in some parts of the world who "choose" to abort female fetuses, for example, because of family/social pressure or because the woman herself knows that a female child will be a financial burden whereas a male child will be a source of financial support. But requiring those women and families to bear the burdens created by the society would not be fair either, even though it would likely go some way to altering the social situation that results in the individual burdens.

Unless a society has a very "pressing and substantial" interest to protect (as the Supreme Court of Canada puts it), individual choices in such personal matters should not be interfered with.

But individuals should be offered the information and support they need to make the choice, and it sounds like you weren't really given those, even if you would not have made a different decision if you had had them.

[Warpy]

15. A pregnancy at 35 is very different from one at 20

For one thing, it was more difficult to achieve. Your math was absolutely correct and I can't believe your doctor wasn't willing to see that. Sacrificing a pregnancy to a diagnostic test at 35 might mean sacrificing one's chances to carry a pregnancy, period. You were perfectly willing to care for a Down's child even if your physician wasn't. She should have respected that.

However, carrying a child with serious deformity is different at 20, when one is just starting out, when one's fertility is at its peak, and when having a first child whose care will deplete family resources will prevent other, healthy children from being born, and when sacrificing a pregnancy doesn't mean sacrificing one's ability to have children.

Everyone is different.

For the record, I've dealt with a lot of Down's patients, children and adults. Many are reasonably high functioning, able to live in group homes and support themselves. I have never met a single one with the capacity to be mean. Naughty, yes, mean, never.

However, it has to be up to the woman in question whether or not she is willing to put forth the effort to raise a Down's child.

[Colorado Progressive]

21. such a great point! n/t

[Orrex]

17. A tough decision--I'm so glad it worked out you and your daughter!

1% of amnios end in miscarriage. Only .3% chance my baby had a disease. So I explained this to my doctor and she was all pissed, like I was dumb and didnt get it.

I've heard many stories of people who've been swamped by frightening statistics and asked to make a more-or-less immediate decision regarding their health or the health of their baby. As if a person suddenly faced with such a life-altering decision is in any reasonable position to weigh all of the statistical probabilities.

I wasn't aware of the 1% miscarriage rate, and I hope you'll forgive a potentially boorish question: Do those miscarriages result directly from the amnio, or does it happen that a condition diagnosed by the amnio results in miscarriage on its own?

I ask because this seems to be a point that the doctor should take great pains to clarify, and it would be a gross disservice if the patient is required to make a decision without receiving a clear explanation of the facts.


I'm afraid I don't have any answer as to when it becomes eugenics. But it would seem that as soon as we start basing abort/don't-abort decisions primarily on the "purity" of society, then we've crossed a very ugly line.

[Colorado Progressive]

20. spontaneous abortions caused by the amnio

That is what I learned from all my books and the internet, about 1%, although others who have posted feel the number is lower. Once DS is diagnosed, 98% get abortions.

[Book Lover]

18. It's eugenics when a woman is forced into an abortion by the authority of the state

You can always say no to your doctor: s/he doesn't give orders, just advice.

[WildClarySage]

19. My situation, a couple of years ago:

After trying for 10yrs to get pregnant, we got the BFP (big fat positive). In my fourth month, after an AFP test, I was told there was a 1-in-65 chance that my baby had Trisomy 18, an inherently fatal genetic condition, and we were advised to get an amnio to determine if a genetic abnormality was present. The AFP is only a screening, not a diagnostic tool. It indicates only liklihoods.

We did get the amnio, and he was fine. But if he had been positive for T18, we would have had no choice but to terminate. I have another child whose life would be tragically altered by the painful death of a sibling. Pregnancy is always a risky condition for women and I would not be willing to risk my life to bear a child doomed to die in his/her first year. There are no guarantees with a healthy child, but with a T18 the horrible guarantee is there. I couldn't risk my health or my fertility, nor my family's emotional health, for that.

I'm turning 40 next year. Next week I see my dr for fertility advice for a third baby. I know what the risks are for DS. Whether or not we'd terminate in that case, I'm not sure, but we'd certainly take into consideration the same issues, as well as the issues of our ability to properly provide long-term care for a disabled child.

[bleedingheart]

23. Most people who abort due to downs, defects ..etc do so for personal reasons

I had a coworker whose brother died at 15 from complications of Downs...her entire childhood was spent caring for him and keeping him from hurting himself. She had the amnio..etc because she didn't want to go through it again...it was too painful for her...

Other women have to reach deep within themselves and honestly ask..."do i have what it takes to parent a child with special needs?"

It is a hard question to ask oneself...but a lot of folks do not have what it would take in terms of personal strength or even finances to do it.

[bjorkfan]

24. "Twilight of the Golds" film

This was a interesting indie film about the same dilemma, except it was about homosexuality of a fetus, not DS. This fairly liberal couple discover their unborn child has that predisposition (the husband is a geneticist/scientist of some sort). The whole plot centers around whether or not to abort. The wife's brother was also gay. People who support abortion rights generally also support gay rights, and vice versa for the opposition, so this would raise questions for both philosophies.

[gollygee]

27. When the state mandates it

it was unethical for your doctor to do more than make a recommendation, though.

[DemBones DemBones]

28. Your doctor was advocating eugenics.

I can't see any other interpretation. She kept pressuring you to have amniocentesis when you had said that you would have your child even if she had Down Syndrome and was annoyed when you correctly pointed out that the chance your baby had Down Syndrome were only 1/3 of the chances that amnio could cause you to miscarry.

Doctors should advise their OB patients of the risks of Down Syndrome and the risks of amniocentesis, and let them make the choice about having or not having the test. It's the patient's baby, not the doctor's.


She was nicer than some OBs, though.

Someone I know was having a third child at 40 and the doctor advised amniocentesis. She and her husband researched it as you did and decided they weren't going to risk losing the baby. They also wouldn't abort if there was a problem. Her husband went along on her next OB appointment and they told him their decision.

The doctor was irate, said "You're going to have to find yourself another obstetrician" and stormed out of the exam room! Nice professional behavior, huh?

[iverglas]

29. more utter nonsense

Your doctor was advocating eugenics.

Really? The doctor was proposing a state-sanctioned and state-enforced program to promote childbearing by certain classes of people and prohibit childbearing by other classes of people?

The doctor was advocating that a procedure be performed to determine the status of a fetus. She apparently advocated this zealously, over-zealously in the opinion of some.

The statement that the doctor was "advocating eugenics" isn't just false, it's really really dumb.

Doctors should advise their OB patients of the risks of Down Syndrome and the risks of amniocentesis, and let them make the choice about having or not having the test.

Since I gather that no one was amniocentesized involuntarily, it appears that this is what happened. The patient was allowed to make the choice. The doctor may have advocated a particular choice over-zealously to the point of unprofessionally, but she let the patient make the choice.

It's the patient's baby, not the doctor's.

It's nobody's baby, hon. It's the patient's fetus.

The doctor was irate, said "You're going to have to find yourself another obstetrician" and stormed out of the exam room! Nice professional behavior, huh?

Huh. Huh!! Kinda reminds you of those pharmacists who won't fill Plan B prescriptions, HUH?

Of course, I suppose they smile sweetly as they do it ...

And of course a doctor actually has a sound medical reason for recommending amniocentesis for older pregnant women, unlike a right-wing asshole pharmacist who refuses to fill a prescription, who has no sound pharmaceutical reason whatsoever.

Maybe you can explain what distinction you might make between the two situations, since I kinda expect you will make one.

And of course the reports of pharmacists doing this are documented, and don't come from some anonymous poster on an internet board who claims to know someone it happened to ...

[DemBones DemBones]

30. Two points: 1) eugenics is not solely

about preventing the "unfit" from reproducing but also about killing the "unfit."

People with Down Syndrome can live longer, healthier lives today thanks to medical advances and, thanks to programs that work with Down Syndrome babies from shortly after birth until first grade, giving them the additional mental and physical stimulation they need, they can be much more "normal" than old stereotypes of people with Down Syndrome. They are more "fit" than they used to be.

2) the OP referred to her fetus as her baby repeatedly in her post. I followed her usage, which is commonly used by pregnant women. Have you ever heard anyone say "I'm having a fetus"?

Now go suck on a pickle to match your mood.

[iverglas]

31. I'm having supper at 10 p.m.

Have you ever heard anyone say "I'm having a fetus"?

It being 5:33 p.m. now, is supper in my mouth? Apparently not, and yet here I am saying "I'm having supper at 10 p.m."

Let's assume I plan to back a cake at 9 p.m. Will you expect me to say "I'm having a cake mix for supper"? After all, there's no cake as we speak, so how can I be having cake for supper?

The mysteries of language, eh?


1) eugenics is not solely about preventing the "unfit" from reproducing but also about killing the "unfit."

And I'm very sure that this has something to do with something under discussion here. If only I could figure out what. Even if it were true.


People with Down Syndrome can live longer, healthier lives today thanks to medical advances and, thanks to programs that work with Down Syndrome babies from shortly after birth until first grade, giving them the additional mental and physical stimulation they need, they can be much more "normal" than old stereotypes of people with Down Syndrome. They are more "fit" than they used to be.

And that's wonderful, isn't it? I think so. If only it had something to do with something being discussed here.

And if only it meant that parents of children with Down Syndrome did not still devote a large portion of the rest of their lives to caring for the child and then worrying about what will happen to the child once they're gone. Then there would just be nothing for a woman who will deliver a child with Down Syndrome to bother her head about, and no reason for women at risk of this happening to want to know the facts.

As long as the decision rests with the woman, it has nothing to do with eugenics. Certainly not when society does provide all the services you speak of, and does not leave Down Syndrome children and their parents to their own devices as an incentive to terminate pregnancies where such a child is likely to result.

And as long as a doctor is recommending that a woman at risk of delivering a child with Down Syndrome or any other disability and is not exercising the authority to compel the woman to terminate her pregnancy, we're not talking about eugenics. We're talking about individual women's choices -- choices that individual women are entitled to make, for whatever reasons they might have. And for which many women wish to have as much information as is available to them. It being physicians' job to provide them with that information and assist them to exercise their options.


Now go suck on a pickle to match your mood.

Dear me, did I request psychoanalysis from you? Nor nasty personal commentary either, I think.



Oops, I forgot. I was so looking forward to your dissertation on how, in your view, a physician terminating a relationship with a patient who refuses to follow advice differs from a pharmacist refusing to fill a prescription. Won't you tell?

I'll start you off. The doctor would pretty certainly be subject to professional discipline if the patient complained.

[Iris]

32. A friend of my mom's was in that situation.

The doctor told her that even if she wouldn't abort if a problem were discovered, getting the results would help with research. Of course, maybe part of that research helped find there is some risk of miscarriage w/amnio. because I'm not sure they told her there was that risk.

[lightningandsnow]

33. It depends.

This is a hypothetical situation ONLY, as I don't think I'd want biological children - it's been a lifelong dream of mine to adopt, especially special needs kids. BUT...

If the child would be born with a disease which would put them in a great deal of pain and/or likely kill them, then YES, I would abort. I wouldn't want to see them in pain.

However, if it's a disabillity we're talking about - blindness, down syndrome, autism, deafness, dwarfism, whatever, then no. If you keep doing that, then you have a real slippery slope kind of situation. I have a learning disabillity - I'm dyspraxic, and almost definetly on the autistic spectrum, although mildly - does that mean my parents should have aborted me?

[iverglas]

34. come now; who is saying ...

does that mean my parents should have aborted me?

... that anyone SHOULD abort any pregnancy?

THAT would be eugenics, indeed. You actually make the point.


However, if it's a disabillity we're talking about - blindness, down syndrome, autism, deafness, dwarfism, whatever, then no. If you keep doing that, then you have a real slippery slope kind of situation. I have a learning disabillity ...

I knew a woman on line a few years ago, in abortion debate forums. She was a neurologist. (I used to be a lawyer, and one of the other people in the group was a PhD student doing something with particles. The basis for a comic strip: a lawyer, a brain surgeon and a nuclear physicist ...)

She was born with a cleft palate. One of those minor sorts of disabilities, eh?

Well, she said that the multiple painful surgeries and social discomfort she had endured throughout her childhood had persuaded her that if prenatal testing showed that a fetus she was carrying had the same defect, she would terminate the pregnancy. She would not want to have a child who would have to endure what she had endured.

Would she have urged anyone else to do the same? Never. But would she have thought it wise for someone with that diagnosis to understand what she had gone through, and what the child would likely go through if the pregnancy were continued and the birth successful? I think she probably would.

The more information, the more likely the decision made will be a good one.

There are very different considerations in relation the various disabilities you mention, and the people making the decisions will have very different considerations in relation to their own lives. There is no one-size-fits-all solution, and no one seems to be suggesting that there is.

[Lyric]

35. It's not eugenics.

Even assuming that a fetus with a congenital disease or birth defect doesn't have a *fatal* one, it's still not eugenics to choose to terminate rather than give birth to a seriously disabled child. The practical reality is that seriously disabled children are expensive to care for--in both money, time, and emotional upheaval. Not every family is able to take on that kind of expense. I heartily applaud the people who are in the position to afford that kind of long-term care, and who choose to have their babies no matter what. But that doesn't make the people who choose otherwise practitioners of eugenics. Having to terminate a pregnancy is rarely an easy experience, and often a heartbreaking one. Why on earth would anyone tack on the extra guilt of a "eugenics" label?