N

ew genetic technologies. Abortion. Who gets to be born and who doesn’t. Ethical issues at the beginning of life are some of the things I think about as a bioethicist. They took on new significance for me when prenatal testing revealed to my wife and me that our baby would have Down syndrome. Three months later, Aaron was born. As I wrote recently in the New York Times, it was a joyous occasion for us. Now 9 years old, Aaron approaches life with an infectious smile and laughter.

Parents like us who choose to continue a pregnancy after learning their child has Down syndrome are in the minority. Most such prospective parents choose instead to terminate the pregnancy.

When I share those statistics with friends and colleagues, they are often surprised, even shocked. Many people don’t see Down syndrome as a condition so dire that it warrants abortion. For them, individuals with Down syndrome tend to have good, happy lives, and their families do just as well as families that don’t have kids with disabilities. Somehow these beliefs about Down syndrome co-exist in our culture with beliefs that motivate most prospective parents to end such pregnancies.

advertisement

I believe that the widespread use of prenatal testing for Down syndrome is one reason behind the high termination rates. What is supposed to be a test that gives parents useful information has also, perhaps inadvertently, turned into an institutionalized signal to prospective parents and the wider culture that Down syndrome is something a family ought to avoid. This message persists in spite of the evidence of stability and well-being in families that include children with Down syndrome.

Several features of prenatal testing suggest that the availability of these tests signal the undesirability of having a child with Down syndrome:

Testing for danger. Medical professionals typically do not offer tests for conditions that are innocuous or beneficial. Prenatal tests for Down syndrome — especially new ones of the noninvasive variety — are often offered to women in the first trimester of pregnancy. Tests for hepatitis B and C, rubella, rhesus sensitization, and sexually transmitted infections such as syphilis and HIV may be discussed at the same prenatal appointment. This practice conveys a message that Down syndrome is pathological, something to be avoided. In sociologist Gareth Thomas’s study of Down syndrome screening in the United Kingdom, he quotes a midwife who observes, “I think people have a tendency to accept what is offered to them because they think you wouldn’t offer it if there wasn’t a good reason to have it.” Offering a test for Down syndrome alongside tests for conditions like HIV reinforces the idea that this syndrome is hazardous.

Standard of care. To make matters worse, physicians, midwives, and other prenatal caregivers are virtually required to offer all pregnant women prenatal testing for Down syndrome, since that is the current standard of care. The courts have defined standard of care as the obligation of health care providers to practice in accordance with the conduct of other qualified care providers in similar circumstance; these practices are often reflected in clinical guidelines. Failing to follow the standard of care opens prenatal caregivers to being sued for malpractice. So they offer these tests even though people with Down syndrome tend to lead good lives.

In an ideal world, open and comprehensive communication between caregivers and prospective parents could help avoid the influence of subtle negative messages about Down syndrome. Parents should make the decision to have prenatal testing for Down syndrome only after being provided accurate information about the condition and about prenatal testing. It should be clear to parents that testing is not mandatory. Care providers should also present a realistic and non-demeaning portrayal of people with Down syndrome.

Newsletters

Sign up for our First Opinion newsletter

Please enter a valid email address.

My wife and I were given sensitive and helpful information throughout the prenatal testing process. Our experience was positive, which made it easier to welcome the idea of parenting a child with Down syndrome. But our experience might not reflect the reality of what many prospective parents go through. The discussion about consent for prenatal testing is often rushed, and the information presented about Down syndrome can be overly negative, focusing on the medical complications and cognitive limitations associated with it. Some studies show that the consent discussion is excessively devoted to explaining the complicated technical details of prenatal screening, with less time devoted to useful information about Down syndrome. Health care providers frequently expect their patients to get the necessary information about Down syndrome from pamphlets, which themselves can be inadequate or overly negative about Down syndrome.

The prenatal testing industry is booming, with tests for more genetic indications continually being introduced to the health care market. As the parent of a child with Down syndrome, it troubles me to think that these tests contribute to the stigmatization of people like Aaron. They have the potential to institutionalize and embody a set of harmful values about what our children should be like, and who should walk this earth.

Access to prenatal genetic information can be a good thing if it is done with sensitivity. The ability to choose abortion is a necessary right. But in our family, Aaron’s presence brings us joy every day.

Chris Kaposy is an associate professor of bioethics at Memorial University in Canada and the author of “Choosing Down Syndrome: Ethics and New Prenatal Testing Technologies” (MIT Press, April 2018).

Leave a Comment

Please enter your name.
Please enter a comment.

  • As comments suggest: Different strokes for different folks. But whatever as long as choice stays an option.
    STATS: Thanks for the article.

  • I understand where the author is coming from, but I don’t think he realizes all the privileges he has to that makes the choice to him seem so easy. To begin with, he lives in Canada, and has significantly less concerns about costs of health care and other support. Particularly in the US, a parent is looking at a possibility of a lifetime of care (at least with monetary support if not actually living together). What if the parent is older-you have to consider that when you die, what will happen to your child? If you don’t have the money to invest in a home or another family member to take over, where does that leave them? Can you afford to put both yourself and your child in an assisted living situation…that is safe? If you are single, how will you handle the additional demands of care-both cost and time? If you already have children, do you have the resources to help them all? These are not easy choices, and it doesn’t necessarily come down to the quality of life your child with Down syndrome may have. As with any choice involving not having a child, it is a very personal decision based on many factors.

    I would support greater training and better information about having a child with Down syndrome with today’s medical technology, but I don’t think parents who choose to terminate should be vilified or worse denied that right (which a law in Ohio passed that denies abortions if a fetus has Down syndrome. It was blocked in court).

    • Do you have a child with Down Syndrome? I have an autistic daughter and she is the sweetest, most lovable person I know. She had a great experience in school (thanks to my relentless advocacy) was the belle of the prom, and is now learning to work and be more independent. She brings joy to everyone who knows her. Your presumption that in the US, a disabled child means a life of misery is full of prejudice and arrogance. Wanting a “perfect” child is not the way to enter a lifetime of parenting. No child is as perfect as a parent might desire, but all children are perfect as they are.

    • Agreed. All anyone has to do is read up on Action T 4 and the roots of this thought process becomes very clear.

  • This article sounds like the author is justifying her own choice not to abort. She should keep her opinions to herself, and let other women make the choice for themselves.

    • I’m pro-choice and have no problem with this article. I think it’s important for people to make informed decisions and if the author is correct that people are given biased or incomplete information about the lives children with Down syndrome might lead, that’s a problem. If the information people are given causes them to think less of children like his son, that’s a problem too. I also think the value of choice is that women can choose to either have or not have an abortion and both perspectives are equally valid. Personally, I don’t feel this author is shaming people who make a different decision from he and his wife, just sharing his own experience.

  • Is it possible that perhaps kids with Down syndrome are now born to parents better equipped to deal with their diagnosis? It’s not just Downs, it’s a lot of things. I don’t think testing stigmatizes Downs or influences people on what action to take next. I think people’s financial situation, their age, their healthcare, religious beliefs, cultural norms, control issues, their own mental health or physical disabilities, and what they already have going on in their lives contribute to their decision. You can also find out if you have a risk for cystic fibrosis, and people with that disease keep living better and longer, too. So it’s not the only one being “picked on.” I’m a big believer in getting more information and acting upon that information however one chooses. . I guess I just don’t understand your offense that people have a CHOICE. If it was required, I’d understand. To me, this is part of the pro-choice movement. I think it’s very personal, and I wouldn’t take offense by it. For example, some people get the information that they are pregnant, and decide not to be pregnant. Tests and medical technology make that possible. People can simply say no. If they feel pressured to say yes, that’s really not something that’s to be regulated, it’s their own fault. Maybe more information on Downs is a good idea, sure, but don’t get mad at the system. You don’t get to define what is a good life for someone else’s kid, and you don’t get to make pregnant women wait until they are postpartum to find out if they don’t have to. The study you cite to prove that peopel are aborting downs fetuses like crazy also says “Evidence suggests that termination rates have decreased in recent years. Termination rates also varied with maternal age, gestational age, and maternal race/ethnicity.” It all has to do with the person and their family and their culture.

    • I think the author is talking more about the information presented to individuals at the time of the prenatal testing and the results. Honestly, it’s a significant problem because many times prospective parents are making important decisions based on old and outdated information. What he;s advocating for is a full picture of what it’s like to be a parent of a child with Down syndrome at the time of prenatal diagnosis. Unfortunately, this is rarely what is communicated and if we’re in favor of the best, current information being available to people when making health care choices, then this should be important to all of us.

Sign up for our Morning Rounds newsletter

Your daily dose of what’s new in health and medicine.

Privacy Policy