Slate recently reprinted an article by Tucker Carlson that argues that prenatal testing for genetic disorders amounts to a form of eugenics. The article is generally excellent.
As a philosopher, I sometimes teach applied ethics. I am generally pretty much liberal-ish, so one might expect me to be staunchly pro-choice. But anyone, on either side of the abortion debate, who thinks the answer to the morality of abortion is prima facie obvious has not sufficiently wrestled with the question. The suggested points at which a fetus may be considered to have personhood (conception, heartbeat, quickening, viability, sentience) all strike me as problematic. (I suggest everyone staunchly pro-choice to read Don Marquis’s “Why Abortion is Immoral,” and everyone staunchly pro-life to read Judith Jarvis Thomson’s “A Defense of Abortion.”) I do, however, think abortion should be legal.
As indicated in previous posts, I am also a mom of a child with a Ridiculously Rare genetic disorder. He has severe cognitive and psychomotor disabilities. Screening tests indicated he was unlikely to have the three most common genetic disorders (Down syndrome, trisomy 18, and trisomy 13). His ultrasounds were normal. So I opted not to have the confirming amniocentesis, which carries with it a small risk of miscarriage. He was diagnosed soon after birth. I don’t know for sure, but I probably would have opted for an abortion had I received the information prenatally. I am so grateful I did not have the information. He is my sweetest baby love muffin, who has made my life unquestionably more difficult, but infinitely richer and ultimately happier.
With my subsequent child, I did get an amnio. He is genetically normal. I don’t know what I would have done if I had received news otherwise. On the one hand, I adore my disabled kid and am relieved I did not abort him. On the other hand, with two disabled kids my life would basically be turned into Total Caregiver. Luckily, I didn’t have to decide.
Carlson is right about some things:
- A life with Down syndrome is not a wreck of a life. Seriously, I see six-year-olds with Down syndrome climbing on the jungle gym and speaking in full sentences. My kid will probably never do either. I would kill for him to end up as high-functioning as someone with Down syndrome. People with Down syndrome have an excellent chance of walking, talking, playing, laughing, socializing in a reasonably sophisticated manner, reading, and being generally happy. They have a decent chance at semi-independent living. I can’t picture any construal of what is means to have a life worth living on which someone with Down syndrome is automatically excluded.
- Those who cite the cost-saving benefits and the improvement of society benefits of prenatal testing (and the resultant lack of people with Down syndrome) are indeed basically making a eugenic argument.
One way in which Carlson is wrong. He says:
“We have a clear position not to take a position on the issue of abortion,” says Paul Marchand, head lobbyist at The Arc (formerly known as the Association for Retarded Citizens), one of the country’s largest such groups. The National Down Syndrome Congress, in its “Position Statement on Prenatal Testing and Eugenics,” is equally explicit: “These positions … in no way involve the movement in the debate over whether a woman should have a legal right to abortion.”
Disability groups tend to be on edge when it comes to public perceptions of the mentally retarded (Al Gore learned this the hard way when he referred to Oliver North’s political supporters as “the extra-chromosome right wing,” drawing roars of protest from Down Syndrome groups). They are quick to spot even the most subtle forms of discrimination—The Arc actually has an official policy demanding equal access to dental treatment. So it is puzzling that so few groups have seen fit to comment on the growth of state-endorsed eugenics targeted—in the most discriminatory, dehumanizing way imaginable—at their own constituents. It’s a little like the NAACP refusing to come out against slavery…
Not that The Arc spends a lot of time pondering existential questions like these. The group’s real concern nowadays, says Marchand, is “the federal role in the future of mental retardation”—i.e., getting more money from the government.
It is totally appropriate for the Arc to take a neutral position on abortion. It is begging the question as to whether the fetuses with Down syndrome are the Arc’s constituents. If one takes the view that personhood begins at conception, then yes, they are. If one takes the (plausible) view that personhood happens later in pregnancy, they may not be. The Arc must represent a wide swath of people who often have nothing in common except having a disabled family member. The recent Susan G. Komen controversy suggests that advocacy groups are more effective when they can advocate for everyone under their umbrella.
And, as Carlson notes, raising a child with Down syndrome is very expensive. If Carlson wants to make sure people do carry their fetuses to term, then the Arc’s action of “getting money from the government” would be a big step to that end.
I think prenatal testing should be available to everyone. Not everyone who has an abortion after an in utero diagnosis of a genetic disorder is practicing eugenics (their reasons are often not about cost-saving or general societal improvement). It is really really burdensome to have a disabled child. One parent of a kid with my syndrome put it to me this way: it’s like having a regular kid, but more so, and forever. Exactly right.
But I will add this. John Stuart Mill wanted to defend utilitarianism (an ethical view which states that actions that lead to the greatest pleasure are the more ethical) against charges of a kind of hedonism – that the basest of appetitive pleasures (such as sex and food) should be promoted over more refined and subtle pleasures (such as reading and being well-educated). Mill argued that anyone who has had both experiences (i.e., base and appetitive as well as refined and subtle) will agree that the refined and subtle pleasures are better, and thus should be pursued. Given that people who have experienced refined and subtle pleasure value them more, that ranks them as a higher pleasure.
I’m not a utilitarian. But it is noteworthy to me that some of the same things can be said about disability. People who have relatively little acquaintance with it are probably agreed that the world would be better without it. People who have had intimate experience with it usually think the world would be a worse place if no one with a disability was born. That says something about its value. This is not to say that we don’t wish things were different for our disabled children, or don’t hope that they become as functional as possible. But a world without disabled children, and my disabled child in particular, would be a grayer world to me.
It is nice to talk about choice when it comes to prenatal testing and it feels comforting to know that each person can choose as they like. The belief of choice however is a fallacy in a public health care environment. The fact is that the elimination of certain lives- those that will require more medical care than average and perhaps special community services and schooling can save the government a bundle of money at a time of extreme fiscal pressure.
In my country (socialized medicine), infants with prenatal diagnoses who are not aborted are not always offered the same treatment as other children. For example, infants with a “pre-existing condition” cannot have an apnea monitor at home if they suffer apnea. Does the exclusion of this item of minor expense lead you to believe that life-prolonging surgery will be provided? Heck no. If you should have a disabled child through no fault of your own (ie the prenatal testing did not detect the condition) parents are tagged and followed should they become pregnant again. A policy doctor told me, “infants with Down syndrome get the gold treatment….for now.”
Rosie, how can you say that Carlson’s article is generally excellent? He argues that abortion for fetal anomalies is eugenics. But, as you point out in your post, the vast majority of people who terminate pregnancies because of genetic defects are not practicing eugenics. They are terminating pregnancies because they personally are not willing or able to raise a disabled child, not because they want to “improve” the human gene pool.
That’s a fatal flaw in Carlson’s argument. He’s using the word “eugenics” as an ad hominem attack. Frivolous accusations of eugenics are just a high brow way of likening your opposition to Nazis. Godwin’s Law strikes again. Carlson loses.
Maybe excellent was a strong word. I’m surprised that it was written by Tucker Carlson!
But I do think there is something to his eugenics accusation when he makes it against those who advocate prenatal testing as a cost-saving measure or as a benefit to society not to have disabled people in it. I’m not sure how common a view that is, but he did cite several people explicitly making it, and I’ve heard it made myself. But you’re right, prenatal testing as practiced by most women should not be considered eugenics.
I also appreciate that he makes the point which is not made nearly enough – that Down syndrome is actually a mild disability (usually), that a life with Down syndrome is a life worth living, and that people who decide against having a child with Down syndrome grossly overestimate how unhappy it would make them. Actually, I wish he cited more data on this point – there are a lot of data that show that parents of children with Down syndrome do very well.
I believe that “eugenics” is an appropriate word to use when there is no informed consent regarding decision to terminate and when there is a withholding of treatments or services that would otherwise be provided to a child with the same issues but without a genetic label or a prenatal diagnosis. When women are not given balanced information upon which to base their decisions, they cannot be said to have made an informed decision.
A very wise professor I know suggested that there was a danger when society stood to financially gain (big time) from the individual, private choice of a woman to terminate her pregnancy. She suggested that the government should transfer funding to support disabled children and families each time a decision to terminate was made. The sad reality is that the opposite has occurred. Funding for disabled children, especially community services and therapies etc has become more strained. This results in moral distress among providers and complaints among parents who are over burdened and often unable to cope. Eventually, this translates upstream to attitudes by those who provide information upon which women make decisions and more significantly, to physicians who have the authority to decide which treatments to offer or withhold.
The discrimination is subtle, incremental and silent. When the government offers and even promotes prenatal testing, there is good reason. One policy person I met admitted that as a team, they once brainstormed about ways to increase uptake of prenatal genetic testing. The cost and benefit analysis demanded it. Women are told that if something is found, the medical system can better prepare for the birth of the baby. “Good mothers” agree to testing. Yet the statistics reveal a different picture. Where I live, the majority of fetuses found to have a defect are aborted, and there is a curiously high early death rate among those born.
There is no doubt that it is enormously expensive to have a disabled child. My son has already cost in the seven figures (almost entirely to a private insurance company). The costs are there, but I wonder if policy people are taking too reductive a view of what constitute benefits.
I like that professor’s idea.
And I totally agree that withholding treatment from a child who received a prenatal diagnosis is a repulsive form of eugenics.
Since it’s a matter of the public paying out less rather than being given money, I think it’s more justified to turn that sentence around — society stands to lose big time from the choice of a woman not to terminate. It’s one of the drawbacks of public financing — when the public pays, private decisions become public matters.
The elimination of obese people, smokers, and alcoholics would also save a bundle of health care money. There are always people who need more of some public good than others.
I am totally shocked that infants could not get an apnea monitor if needed. So children must risk death because their parents made the decision to have them (one that, I must say, I am not at all convinced is an immoral decision)? Is that the child’s fault? Does the government deny coverage to the obese and smokers and alcoholics? And how is that the gold treatment?
Just because parents who abort their babies with Down syndrome are not consciously doing it for eugenic purposes; for the ‘good of the species’, doesn’t excuse organizations representing Down syndrome from their duty to speak out against it. Parents are being manipulated by healthcare providers, who in many cases DO have eugenic agendas. But its not the first time in history when parents have been made part of a eugenic plan.
After all, the T4 Program was the test program for The Holocaust. The T4 program enlisted parents aid to surrender their children to the care of the state. The state then sent their children to the deadly showers, recovering their clothing and gold teeth, which were sent back to the institutions in eerily empty buses. The parents were then informed of the death of their child.
German bishops protested and the program was halted until it could be run with impunity during the war. Even Pope Benedict’s 14 year old cousin was forcibly removed from his family and reported dead a few months later in 1944.
As the mother of a child with Down syndrome, I will speak out on this grave injustice before the bus comes for my child.
Parents are being manipulated by healthcare providers, who in many cases DO have eugenic agendas.
I vehemently dispute this statement. It is an ugly calumny, one I have seen oft repeated with no evidence to support it. The fact that the commenter cannot offer an opinion on the subject without immediate reference to the Holocaust tells readers all they need to know about the merit of the accusation.
Russell Sanders, I am the author of a book, “A Special Mother is Born” which has the testimony of 34 parents of special needs children. Most of them say they were pressured by their doctors to abort their children, some of them actually switched healthcare providers midstream to be treated fairly. Dr Brian Skokto’s research on American and Spanish mothers confirms that they felt pressure to abort their child with Down syndrome. The same story is found in other books, “Defiant Birth” and “Gifts”. You don’t get a 92% abortion rate without a concerted effort. If it resembles the T4 program its because it has the same aim; eliminating life unworthy of life.
Having met none of the 34 parents you met in writing your polemic, I have no way of commenting on their particular experiences. Perhaps they are characterizing a frank discussion of the difficulties attendant on raising a special needs child as “pressure,” perhaps some were genuinely pressured. I don’t know.
What is clear is that you have an agenda, and are perfectly happy to make broad statements about my profession in support of it. In keeping with the very generous commenting policy in this online community, you can tout your inflammatory falsehoods with little interference from me. I will refrain from responding to any further comments from you, but would like to make perfectly clear that your slurs and accusations are wholly unwelcome on my blog.
Here’s the study by Dr Skotko on receiving a prenatal diagnosis in Spain.
http://www.brianskotko.com/images/stories/Files/spainprenatalsupportenglishversion.pdf
Dr Skotko asserts that babies with Down syndrome may disappear as a result of prentatal testing. http://www.brianskotko.com/images/stories/Files/adcskotkofinalarticle.pdf
The fact that birth rates for babies with Down syndrome have actually increased in the past several decades leads me to believe that Dr. Skotko is full of shit.
Did you consider the trend of women giving birth to babies later in life? That may account for some of the increase in births of babies with extra chromosomes, and perhaps those of us who advocate on behalf of such children’s right to be born have been somewhat successful.
Prejudice often takes centuries to eradicate. Dr Jerome Lejeune, the Kennedy Award winning French geneticist who discovered Trisomy 21 in 1959, fought against a society which blamed the mother’s case of syphilis for causing Down syndrome. Thanks to his efforts to increase respect for such individuals we no longer consign them to institutions and welcome them into our typical classrooms. Dr Lejeune’s efforts are bearing fruit, an enzyme is in clinical trials in Roche laboratories which has made the cognition and memory of mice with a similar trisomy, completely normal. Dr Mobley’s work is very promising, http://www.ncregister.com/daily-news/the-fight-to-eliminate-down-syndrome-eugenics-at-work/
Calling doctors Nazis seems insane to me. Doctors have all different sorts of views on the issue. Interestingly, I felt the opposite pressure. After my son’s birth, things looked very dark for him. There was pressure to throw every life-saving measure at him. I remember expressing concern at one point about how many interventions were happening, and the doctor said with a lot of snideness, “You know, usually parents beg us to do anything they can to save their kid’s life,” the clear implication being that I was an unloving parent.
People can report feeling pressure for all sorts of reasons. I’ve heard that parents felt pressure to abort when doctor expressed sorrow on giving a diagnosis. But that seems to me to be legitimate.
I disagree that you don’t get a 92% abortion rate without a concerted effort on the part of doctors. You can get it with a huge amount of cultural misinformation about what it’s like to raise a disabled child, a huge amount of cultural intolerance for I/DD, and lack of adequate government support for care for disabled kids.
The rate is also so high because many people who would never abort refuse the amniotic. Sarah Palin is something of an exception in that regard. So the people who take the test are already usually okay with abortion.
And obviously, likening abortion to the holocaust is question-begging. It is not at all clear that a fetus is a person.
I agree with you that the world would be a sadder place if no one with Down syndrome were born. I do indeed wish more people decided to birth disabled children. But we don’t need to liken doctors to Nazis.
I will say plenty of doctors have made insensitive comments. But few of the pressuring variety. And a large majority of doctors have treated my son with respect and care.
Odd Thoughts:
What do you say about the decision to carry a baby to term, knowing that it won’t survive outside the womb?
Secondary odd thought: Does this decision change based on whether you are planning to donate the baby’s body to science, thus giving many other children a chance to live?
“[P]lenty of doctors have made insensitive comments.” Starting with your friend, Dr. Saunders!
I can count on one hand the number of times I’ve commented on a blog post, but I can’t help but observe that Dr. Saunders truly degrades his profession in the tone he takes toward a woman who appears to me to be expressing an earnest opinion (one that I mostly disagree with) in a respectful manner (at least relative to what you generally see on comment boards). She obviously overstated the relative number of doctors who have “eugenic views,” but the very article that prompted this discussion quoted two prominent doctors who expressly conceded that they approved of eugenics. (And I think if we used the broader connotation of the term, proposed by Barb and at least partially endorsed by Rose, the number would be quite high indeed.)
Dr. Saunders appears not to have read this article, or else he would not have self-assuredly stated that there is “no evidence to support” the “ugly calumny” that parents bearing fetuses with (pre)birth defects are often subject to pressure from their doctors to abort. Carlson’s article cites a study of the Canadian Royal Commission on New Reproductive Technologies, which found that, of those women who tested positive, after amnio, for a birth defect, one in three believed she was “more or less forced” to have an abortion. I suppose they’re all lying or delusional. But, even if they were, it’s not as if there’s “no evidence” to support the commenter’s view.
Finally, though I generally agree with Godwin’s principle, it seems that, when the very title of the post mentions “eugenics,” it’s not wholly inappropriate for the subsequent conversation to mention the Holocaust.
Before I’m accused of having an “agenda” (as if there’s something wrong with that), let me own up to it: I believe doctors should try not to be such jerks. There’s a reason that bedside manner, vel non, has a direct causal effect on the incidence of medical malpractice suits in America. (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1071103/)
First of all, there is essentially nobody on the face of the earth I adore and respect more than Rose. I agree with her about just about any subject you can name. Since the question seems to have been forced, however, I will express my disagreement with her regarding the Carlson article. I think it is anything but excellent. To my reading, it is a shoddy mess of begged questions, leaps of logic, inflammatory rhetoric, cherry-picked data, selective quotation and unfair generalization. Yes, there are gestures toward “evidence” in the article, but not one single bit is anything like a valid basis for any of the grander, uglier statements he makes.
And let’s get something perfectly clear — if anyone wants to draw a line between members of my profession, between my colleagues and friends and me, and link that line to the monsters of the Third Reich, then they’d best come with a case that is as airtight as a motherfucking space suit. One decades-old study from Canada about patient perceptions, to which he provides no link, does not a particularly compelling argument make. So, fine, you want me to amend what I said? OK. There’s no good evidence to support what Carlson or this Vasquez woman have to say.
Before I say my final word on Ms. Vasquez, I will offer one concession. I know nothing about the medical cultures of either Canada or the Netherlands. Certainly in the latter case there seems to be a culture that smacks of eugenics. If that is the case, it is a culture of which I do not approve, and which I do not seem duplicated here.
However, Ms. Vasquez had better bring something better than the preposterous statements of some “expert” that could be easily refuted by any second-grader with a modem. It took me all of thirty seconds to disprove her second-hand statements about the dwindling numbers of Down syndrome patients. Again, you wanna accuse me of colluding with some faceless other who would send “a bus” for your disabled kid? Come with something real. Otherwise, as politely as I can I will invite you to find a pointy stick to sit on.
Finally, I remember hearing about the 1977 case of the Downs patient in Canada whose parents refused life-saving surgery. We discussed that case (which, if I recall correctly, was a source of great controversy even within that hospital at the time) in my medical school ethics class. The overwhelming majority of us recoiled from the parents’ decision in horror, and not one professor rose to suggest such a choice was what should be encouraged for other patients. It is telling that, for all Carlson’s menacing allusions to a culture of eugenics within the US medical community, no subsequent examples of similar cases could be found for his article.
And yeah, it’s a real shame us doctors are all such jerks. It was helpful of you to point it out.
First online dictionary I grabbed defines eugenics as:
“The study of hereditary improvement of the human race by controlled selective breeding.”
By this definition I would assert that eugenics requires centralized and organized intent. Thus, the choice of parents individually and independantly of each other as to whether to carry to term a fetus for whatever reason is definitionally not eugenics.
Based on that reasoning along I feel that Carlson’s article collapses without even getting out the gate.
Rose, on the other hand, has a well thought out post here and I must commend her on crafting such a fine silk purse despite starting with such a pig’s ear as Carlson’s article.
Ugh, now that everyone is slamming the article, I feel like I have to re-read the article to see if I misread it. I probably did!
But before I bother, a few thoughts on the foregoing:
I take a eugenic attitude to be at least one where people would like to see a systematic elimination. Not whether they are able to effect it. To that extent, some of the doctors cited by Carlson could be construed as having a eugenic attitude. Not, as I stated, the vast majority of the parents who simply wish to avoid a more difficult life.
I do indeed think it is a terrible slur upon all doctors to call them Nazis. Clearly, some are sympathetic to the view that the elimination of the disabled would be a good thing and should be systematically effected. I came across some who hinted as much to me when dealing with my son. And contra Dr. Saunders’ experience, when I teach the Down syndrome euthanasia cases to my undergrads, I get many papers defending the practice (this is for babies who are already born). These are undergrads, not doctors, but the view is out there among college students, and I imagine that some of those people become doctors. Clearly, no one knows how many. If I had to speculate, I’d guess it’s a very small number, but I have no hard evidence. There is certainly no evidence that I’ve seen of a systematic effort in the U.S. to eliminate the disabled. I am not sure about the situation in Barb’s country.
Citing the feeling of pressure to abort is not evidence of eugenic intent by the doctor.
When we received our diagnosis, doctors were able to tell me that my child would likely never walk, talk, or see. That was what had happened with children who had similar diagnoses. They were, with one or two exceptions, careful to stress that every case is different and no one can predict any of these things with certainty. (For the record, at age 2 1/2 he can indeed see, he seems likely to walk at some point, and is beginning to use sign language and understand spoken language.)
What doctors could not say was this: that he would throw his head back with laughter whenever I pick him up and dance with him. That he would grin like a maniac and clap every time I walk in the door. That the first word I knew he understood (when I thought he would never understand any language) was “kiss” because every time I said it he would plant a big wet sloppy one on me. That he would adore “playing” piano. That he rolls over to new acquaintances and pulls on their pant leg and tries to get them to play with him. That wearing a silly hat will send him into an uncontrollable giggling fit. That for every minute his disability makes my life more aggravating, there are three minutes where he makes my life a delight.
Doctors can tell you how your child will not be like healthy children. They SHOULD tell you that. You need to know what you can expect. But they can’t ever tell you what the specific joys of parenting your child will be. That’s not part of their job or part of the medical literature. Frankly, some of them don’t realize that there can be joy in parenting such a child. That is not the same as eugenic intent. And how does that come across when you remember it, especially when your child exceeds expectations? That your doctor was extremely negative about your child. And if you discussed it prenatally, that can come across as pressure to abort.
The majority of doctors that I’ve run across have treated my son with the respect and care he deserves. It is indeed a slur against them to call doctors Nazis.
One more thing. An example of how complicated is this issue is my son’s geneticist. As his specialty implies, he works day in and day out with children with genetic disorders. He is the warmest, most caring doctor it has ever been my privilege to work with. He is affectionate with and respectful of my son, follows up the tiniest detail of his care. He answers emails within minutes, makes sure we get n early to all appointments with subspecialists. He gives us advice on how to deal with my son, which doctors to see, even which preschools are best equipped to handle him.
When I told him I was pregnant again, he recommended I get prenatal testing and oversaw it. Although it was unstated, implicit in the recommendation was that I would get an abortion if positive for a genetic disorder. Why else test?
Would this have been construed as pressure by some? Yes. Do I think his goal is to rid the world of people with genetic disorders? Hell, no. Do I think that if I turned down prenatal testing, and had another child with a genetic disorder, he would treat him with any less respect and care? Hell, no.
Dr Saunders; my last name is Velasquez not Vasquez.
I won’t give your challeng any more dignity until you apologize for the profanity. You are proving me right about doctors lack of civility.
I apologize for getting your name wrong. Nothing more.
I remark your temerity in expecting an apology for the language I use on my own blog, and find it wryly amusing that you think the threat of no further comments from the likes of you would somehow goad me into doing so. Some things, madam, are undeserving of civility. Your accusations are one such example. I will say once again that I cannot stop you from commenting here, but you are utterly, perfectly unwelcome.
“Chromosomal racism is brandished like a flag of freedom. … That this negation of medicine, of all the biological brotherhood that links mankind, is the sole practical application of the knowledge of Trisomy 21 more than breaks my heart … Protecting the abandoned-what a reactionary, retrograde, fundamentalist, inhuman idea!”
Dr Jerome Lejeune,
Winner of the William Allen Award and John F. Kennedy Prize for discovering Trisomy 21, the cause of Down syndrome