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.