New 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.
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.
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).
There are figures on the number of births of children with Down in US and UK versus the predicted incidence, and while numbers are lower than predicted in US, and more so in UK, the differences if I remember were in the 20-30 percent range, so either people do not always abort, do not get screened, or there is not such a medical wall. Down is not all that common, and individuals with the syndrome vary in degree of disability. Even the generally pleasant temperament associated with Down varies from person to person, there are grouchy people with Down, though I’ve not heard of many. It is a good area to debate genetic screening, as one of the largest problems with D own, reduced life expectancy due to heart defects, is now resolved with surgery, and life expectancy was up to 60 as of some years ago. As this has happened, it has emerged that for undetermined reasons, persons with down are less vulnerable to solid-tumor cancers, more vulnerable to blood cancers, and seem to have an elevated risk for early dementia. One could argue these potentially important discoveries as an argument to fight for every life, or one could, in my view, make a decision to choose not to have a somewhat disabled child. More refined understanding will likely make for more difficult ethical debates.
This article really resonated with me and I agree with a lot of it, surprisingly. I recently found out at 12 weeks pregnant that our son had stopped growing at 8 weeks, and then a few minutes later, my doctor came in with my NIPT results, which had just arrived, showing that there was a high likelihood he would have had Down Syndrome. The doctor said he would have told me to terminate the pregnancy anyway, and I would like to think he was saying that because our baby was already dead and he wanted to make me feel better. I would like to think that if we had had to make the choice I would have actually been made to feel like I had a choice. TBH, I am not sure what I would have chosen – there is a decent chance I would have chosen to terminate, especially since my husband felt very strongly about termination in the event of a Trisomy 21 diagnosis. Given the way things turned out, I am grateful to have had the testing, especially because it helps to know that the miscarriage wasn’t because of anything I did or didn’t do while pregnant. And even if the baby hadn’t died in utero, I would have wanted to know if he was likely to have Down Syndrome regardless of what decision I might have made, because if I decided to keep him I would have wanted to be prepared and would have wanted the doctors to be prepared in case it affected the way the delivery would be done or what care the baby would need right after being born. But it did bother me the way most of the medical professionals I encountered (as well as members of my own family) assumed I would have terminated and/or told me I was lucky not to have had to make that decision. I believe so strongly in the right to terminate a pregnancy, but I believe women should actually have the right to choose, free of pressure to terminate or to continue a pregnancy. My doctor was wonderful and compassionate when we got the bad news, but I really hope he wouldn’t have actually pressured me if we had had a choice to make.
Sorry but I don’t care, if the baby comes with down syndrome then it’s aborting time.
I wouldn’t blame my parents if I had that pathology and they aborted me, it was already pretty hard for them to rise me and I was an average baby.
If you are such and good person and you choose to bring a child with down syndrome to this world, good for you, but that doesn’t give you the right to guilt anyone on their decision.
Pete, I agree with you that nobody should be guilted into keeping a pregnancy they don’t want, for any reason, including Down Syndrome. But I don’t feel that is what this article is doing. Having just been through the experience of losing a baby who was highly likely to have Down Syndrome, I understand what the author is saying about pressure to terminate and assumptions made by the medical community. I don’t agree with him that testing should be more rare or that more information is needed prior to testing, but I did sense an assumption by my doctors that I would have wanted to – or should have wanted to – terminate the pregnancy if I had had the choice. If I did have the choice, I would have wanted to get a lot more information prior to making a choice, and I think it would have been difficult because it seems the information from both sides is pretty slanted.
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