COMMENTARY

Should It Be Harder to Get Abortions for Down Syndrome Babies?

Arthur L. Caplan, PhD

Disclosures

July 26, 2018

Hi. I'm Art Caplan. I'm at the New York University (NYU) School of Medicine, where I run our Division of Medical Ethics.

One of the toughest issues that has been emerging in the highly controversial realm of abortion and the ethical issues raised by elective abortion is what to do about Down syndrome. Many of you know this is a relatively common chromosomal abnormality. It can lead to a range of outcomes in the child who has the condition.

Some children are severely affected and wind up institutionalized. Others can function at a very high level and are happy. Some get jobs and live independently. In recent years, we have even seen kids with Down syndrome appearing on cheerleading squads, or being put into beauty pageants. It's clear that there has been movement to not exile or isolate children in the United States with Down syndrome and to try and get them more mainstream.

Many parents of children with Down syndrome, or those who have elected to have a child with Down syndrome, are worried that Down syndrome is becoming increasingly rare in Europe and the United States. This is because of in utero testing to see whether Down syndrome might be present.

In Europe, where amniocentesis is widely available and paid for, most countries have around a 90% elective abortion rate for Down syndrome.[1] In the United States, where it's a little bit harder sometimes to get the testing covered by insurance, possibly 75%-80% of people who get a positive result for Down syndrome choose to end the pregnancy.

Many parents say, "I don't want to deal with a child with Down syndrome. I'm not comfortable having a child with Down syndrome." If you look at polls of what Americans think about support for elective abortion,[2] high up on the reasons that people think are legitimate to end the pregnancy include rape, incest, and genetic or hereditary diseases that are serious in the fetus. That gains a lot of support as a reason to let a couple or a mom choose not to have the baby.

A big clash is coming. A number of states have said, "If we take Down syndrome seriously and try to understand the capabilities that some kids have, it's just wrong to have an abortion for a child who may have the capacity to be happy, make a real contribution in their families or with other people, and enjoy life. Why would we end those pregnancies? It's not that serious a condition."

A number of states are trying to pass laws that say you should not be allowed to end the pregnancy if the reason is because the child has Down syndrome. Remember, too, genetic testing is getting better. We're moving away from amniocentesis and more toward testing cells from the fetus, with free-cell DNA testing in the pregnant woman perhaps as early as 7 or 8 weeks. I imagine more Down syndrome might get detected, and more people will be faced with the choice of what to do about a Down syndrome baby.

Whose Decision Should It Be?

I still believe that parents have the right to choose if they do not want to have a child with a genetic anomaly or genetic condition. After all, legally, you don't have to have any reason to decide to end the pregnancy. But I do think it's an individual decision.

On the other hand, you want to make sure that people decide with full and adequate information—that they are not acting out of bias, fear, or stigma. Maybe they don't understand Down syndrome. Maybe they don't know what the range of outcomes are and what's possible with a child with Down syndrome.

I have no problem offering information to parents and saying, "When you test for genetic diseases and for things like Down syndrome, here is what you need to think about. Here are resources you can go to. Talk to people who have had a child with Down syndrome. Here is the best medical information about the health impact of Down on the child, [for example the possibility of a] shortened lifespan. Here is what people who have made the decision not to have a child with Down syndrome have said."

I don't favor mandating that information. I think people should be allowed to access it, choose it, and decide how far they want to pursue it or not. But it ought to be out there. It certainly should have input from the Down syndrome community, parents who have had a child with Down syndrome, and also from associations and groups that work with kids with disabilities. It's a tough call, because in one sense, people would say, "Why end the life of someone who might enjoy it?" On the other hand, there are parents who are going to say, "The impairment is burdensome. I'd rather not do that." You may even get families who already have a child with a severe medical problem or handicap. A second child with difficulties could overwhelm them. I think you have to take it on a case-by-case basis.

I don't think our society should tell people what to do when it comes to decisions about ending pregnancies as long as we are talking about fetuses with genetic problems. But we do have to ensure that information is out there that's fair, balanced, accurate, and up-to-date. That ought to be made available for people to choose as they wish.

I'm Art Caplan at NYU School of Medicine. Thanks for watching.

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