The Illiberalism of Prenatal Selection

The American eugenics movement aimed to improve our national destiny by gatekeeping the gene pool out of which would be forged future great Americans. Eugenics’ proponents successfully erected pseudo-intellectual justifications and legal barriers that prevented people with traits they deemed undesirable from having children. They implemented immigration restrictions for disabled people and “less fit” (i.e., non-Northern European) ethnic groups. They forcibly sterilized and institutionalized disabled people. Weakness and disability and failure would, they argued, be a thing of the past. Without these genes dragging us down, the nation would flourish, strong and productive.

Eugenics is now rightly seen as a dark point in U.S. history. It wrought devastation in the United States, enabling legal and extra-legal racism as well as decades of unspeakable cruelty to disabled people. It notoriously caused even greater devastation in Europe. Nazis were so inspired by the American eugenics movement that German politicians and scientists traveled to the U.S. to deepen their understanding of how to weed marginalized people out of existence.

Even as eugenics is discredited, though, some of its ideas survive. It is still perfectly acceptable to discuss questions such as: should we employ our knowledge and technology to prefer the birth of non-disabled people, or people more likely to be happy, or people more likely to strengthen communities? Among ethicists, there has been an explicit revival of eugenics, now termed “liberal eugenics” to distinguish it from its shameful predecessor. Proponents of liberal eugenics firmly distance themselves from the bad old days. Gone is the explicit racism and classism from the movement’s heyday. They also decry state-sponsored enforcement mechanisms for ensuring the births of only preferred kinds of people.

What they argue, in general, is that it’s morally acceptable for parents to have total reproductive freedom, including the freedom to choose one kind of child over another. Some argue that it’s morally acceptable to choose to have a non-disabled child. Others argue that parents not only can prefer to have a non-disabled child, they should prefer it — if they’re going to do right by their child. After all, non-disabled people’s lives are generally easier than disabled people’s. Some note the expectant parents’ lives could be easier with a non-disabled child, and that parents are entitled to choose such an easier life for themselves. Still others argue that we can make the world relatively a better place by having a healthier or more capable person in it.

Liberal eugenics in practice

At the height of the recent Zika virus threat, the topic of eugenics bubbled up from potential parents’ private conversations and ethicists’ arguments into public debate. When a pregnant woman becomes ill with the Zika virus, her fetus has a chance of developing microcephaly or other neurological atypicalities. Abortion is outlawed in Brazil, where the Zika virus was prevalent. People discussing that crisis argued that a fetus exhibiting a disability is one of the most compelling reasons to ensure women have access to abortions, that access to abortion is necessary to ensure that people can choose not to have disabled children. This is liberal eugenics in practice.

On the contrary, while I believe access to abortion is indeed necessary, I also believe eugenics, even modern liberal eugenics, is one of the most morally fraught bases for reproductive decisions. My objection to eugenics is rooted in respect for the moral equality of all humans — a firm belief that all people are equally valuable, though they may differ in race, gender, sexual orientation, education, talents, intelligence, economic productivity, community benefit, and so on. (In the case of a prenatal screening that reveals anomalies that will result in painful, early death, my objection does not apply. In cases of non-terminal congenital disability, however, it does.)

Liberal eugenicists are worthy defenders of women’s autonomy on several relevant issues. I believe that any woman should have legal access to abortion services for any reason, including eugenic reasons. Even as I believe eugenics is morally troubling, I still firmly believe a woman’s autonomy trumps any state interference in her decision-making. Also, it’s important to bear in mind that eugenics is not necessarily an abortion issue. There are other actual and potential ways to detect prenatal anomalies and choose a preferred child, including selecting certain IVF embryos and using gene-editing techniques. Such decisions are also morally fraught.

I understand intimately the difficulties facing parents who have a child who has disabilities of the sort caused by Zika. My 9-year-old son Edmund has microcephaly, though caused by a genetic syndrome, not a virus. Edmund is non-ambulatory, non-verbal, fed solely via g-tube, and has other health challenges. It is unquestionably easier for me to raise Edmund in suburban Washington, D.C. than it would be for an impoverished mother in Brazil — a point I’ll discuss further below.

Disability and social context

“Disability,” like so many value-laden topics, is difficult to define precisely. Most people have a vague sense that to be disabled is to be different. LeBron James, however, is quite different from most other humans in his height and athletic talent, and no one would consider him disabled for that reason. More specifically, people are considered disabled if they deviate from the norm of the human species in some way that tends to hinder their well-being.

If it’s true that disability is intimately connected with human well-being, though, then it is a mistake to assume that a person’s disability is simply a matter of their physical or cognitive deviation from the species norm. It is impossible to understand disability without taking into account social, cultural, and technological factors that may impede or enhance well-being.

Those of us who wear glasses or contacts rarely consider ourselves significantly disabled for that reason alone. Yet we do deviate from the species norm in a way that potentially hinders our well-being. Most of us would have a tough time flourishing in a hunter-gatherer society with no access to vision correction. In that social, cultural, and technological context, we would certainly be significantly disabled. In our society, though, we have readily available technology that allows us to achieve our ends, and there is little-to-no social stigma for using that technology.

Someone who is paralyzed from the waist down is considered disabled in any culture with which I’m familiar. Yet two paraplegic people with the exact same physical manifestations could have wildly different levels of well-being, depending on cultural context. In some cultures, a paraplegic person may lack access to mobility aids and experience severe social isolation or hostility. Imagine in contrast, though, a person with the very same bodily difference in another environment, one with high quality wheelchairs and freely accessible buildings, transportation, and events; an environment in which there were no social stigma for paraplegia. Those two people have vastly different levels of well-being.

This is the core of the argument against liberal eugenics: we should not eliminate people who have trouble flourishing in our society, in the shared environment we’ve created. If some people do have trouble flourishing, it’s preferable — indeed, a matter of urgent social justice — to help forge a society in which people who differ physically or cognitively from the species norm can thrive.

Many of us, including liberal eugenicists, recognize that certain forms of eugenics are potentially unsettling. That someone might choose not to have a child because a sonogram reveals that that individual is female. Or because (as may well eventually happen) a test reveals a gene for homosexuality. Some parents might demand gene-editing to ensure that their future child is lighter-skinned and had more typically Caucasian features. These choices arise from unjust social structures, not something inherently undesirable about that child. If many parents make such choices, the presence of certain marginalized groups in the population might be diminished — and thus further marginalized. To paraphrase the ethicist Adrienne Asch, it’s one thing, morally speaking, if a person chooses not to have any child. But it’s something else if a person doesn’t want a particular child — all the more so if the desire not to have that particular child stems from social injustices.

In the cases of gender, homosexuality, or skin color, a parent who desired to choose otherwise could correctly argue that a child who is male, straight, or light-skinned would have an easier life. Due to social injustices, that’s certainly that’s true. But it doesn’t mean that a male, straight, light-skinned life is more worth living, or that having such a child ought to be preferred to having a female, LGBTQ, or dark-skinned child. Rather than ensuring such people aren’t born, it’s clearly better to change our culture so that women or LGBTQ folks or dark-skinned folks can thrive.

Disability is by no means the same as gender, sexual orientation, or race and skin color. Here’s what a disabled individual has in common, though, with those other individuals: their life will likely be harder due in large part to social injustices such as inaccessibility and bias. Their life could go much better in an environment that accepts, respects, and accommodates disability. As in the cases of other marginalized groups, a life that is more difficult does not automatically mean that life is less worth living. Rather than eliminating disabled people, we could create a culture where disabled folks can thrive. The fact that it is indeed easier to raise a disabled child in suburban Maryland than in many places in Brazil is an urgent demonstration that a disabled person’s environment is unalterably linked to their well-being.

When non-disabled people imagine what it’s like to be disabled, or what it’s like to parent a child with a disability, it seems overwhelmingly difficult and terrifying. They are focused on what the difference in their life would be. But disabled people who are living their lives are not always focused on their disability. They are thinking about what to make for dinner, or how to avoid the traffic on I-95, or on savoring a great song, or how to deal with a child who is being a pain in the butt. A surprising (to non-disabled folks) number of people who become disabled report after a period of adjustment that their lives are going as well as they did before. That they’re as happy. Some experience their disability as more of a nuisance than a burden. Some, to be sure, experience more burden than nuisance. Many disabled people see their disability as an essential element of their identity, one they wouldn’t change if they could.

When my child was diagnosed, I wept for what I perceived as his “lost” future, and how difficult all our lives would be. Over time, Edmund has experienced his own future, which isn’t “lost” just because it is atypical. His disability makes his life harder for him than it would otherwise be, no question. But he has a lot going for him that does make his life go well. He is easy-going, friendly, affectionate. He loves animals and his friends, and he has a way of winning people over. He is incredibly persistent (I only wish I had his grit!). He was born in an era and location where he lives with his family, goes to school, where technology can greatly augment his mobility and communication.

As for the difficulty involved in raising a disabled child, our lives are more difficult in some ways. It’s impossible to get a babysitter. We don’t do some activities as a family we otherwise would, say, hiking or camping or travel. Carrying him upstairs is an unmitigated back-killer. And yet. I couldn’t imagine life now without my sweet boy. He’s not perfect or an angel — a persistent child can be an (ahem!) occasionally annoying child.  But just as with my two non-disabled children, I don’t love him for what he can do, I just love him. I couldn’t imagine my life without any of them, I couldn’t imagine any other children in any of their steads. And this is a bond I share with some Brazilian parents of microcephalic children.

In the end, liberal eugenics retains a fatal flaw. You can disavow racism and classism. But you can’t avoid the fact that in endorsing eugenics, you are saying it’s okay to believe that some kinds of people are better than others. As our troubled times have demonstrated again and again, there is, in the end, no moral precept more urgent than that no kind of person is more valuable than any other.

Featured image is Parental Joy, by Karl Lemoch.