Several days ago, the New Zealand Medical Journal published a viewpoint article, “Testing times: do new prenatal tests signal the end of Down syndrome?”, which considered the ethical implications of screening for Down syndrome (DS) using more advanced “non-invasive prenatal diagnosis” methods (you can read about the current screening programme here). The advocacy group, Saving Downs, considered the article to be highly offensive and discriminatory, and argued that it perpetuates negative stereotypes of people with DS (you can read their responses here, and you can read others’ responses to Saving Downs here and here). Saving Downs drew attention to the following quotation from the article in particular:
we accept that in some cases, the perceived disadvantages resulting from a Down syndrome pregnancy (to child and family) may outweigh the perceived good from the child’s life.
At the outset, I would like to acknowledge that I agree with the authors of the article that it should be the pregnant woman’s right to decide whether or not to continue her pregnancy, particularly in the early stages of pregnancy (both in the case of a DS diagnosis, and in pregnancies in general). However, I am interested in and concerned about how pregnant women make such decisions, and the information and social norms which may or may not influence their decisions.
Screening for DS is voluntary. That is, pregnant women can choose whether or not to undergo screening. They should be reminded of this throughout the process. The authors state that:
it is important to ensure that women are never coerced into accepting screening or subsequent termination, and a decision is made which is appropriate for them.
The article states that currently only 55% of pregnant women in New Zealand participate in DS screening, even though it is offered to all pregnant women, and the authors suggest that this indicates that women are making voluntary decisions (because 45% of women are choosing not to participate in screening). They maintain that:
society offers a choice, not a routine procedure.
I am not entirely convinced.
Women undergo screening for various reasons. But women also do not participate in screening for various reasons. The mere fact that just under half of all pregnant women choose not to screen does not necessarily mean that they are choosing not to because they wish to continue their pregnancies (regardless of whether or not they have “DS pregnancies”). It is possible that some pregnant women are simply too ill to come in for an ultrasound or blood tests. It is possible that some pregnant women have religious, cultural, or otherwise personal beliefs that are at odds with the screening methods. It is possible that some pregnant women are simply not aware of, or do not properly understand, the screening options (for various reasons). It is also possible that some pregnant women are encouraged not to screen (by their partners, family members, or friends). And it is also possible that some women simply forget, or don’t have time, or don’t care. Of course, I cannot speak on behalf of all pregnant women. But I can share my own experiences of pregnancy.
Before I was pregnant, I read a lot about DS screening (in doing research for an essay), including several articles which claimed that some women felt like they had no choice but to undergo screening despite the fact that it was “voluntary”. I became convinced that I would, when the time came, decline screening, even if I felt pressured to do so. I felt that screening was not necessary for me because I was sure that I would continue my pregnancy anyway. Then, when I was pregnant, my midwife told me about the screening programme. I had anticipated this conversation for several weeks, but I was surprised and impressed by how non-directive she was as she explained my options. After talking about it for a while, I told her that I did not wish to take part in screening, and she respected my decision. But over the next week or so, I started to feel some pressure, from family members and friends and other health professionals, to take the tests. Not overt pressure. Just judgemental looks and comments like “wouldn’t you rather be prepared?!” and “don’t you want to see your baby?”. I started to feel like I was being really irresponsible. Like I had made the “wrong” decision. And so I changed my mind. I got to “see” my baby. He did not have DS. I continued my pregnancy. I often wonder whether my decision to screen was “voluntary”. I also wonder if, had he had DS, I would have felt pressured to change my mind about continuing my pregnancy too…
The point I am trying to make here, a point which is unfortunately not addressed in the article, is that decisions are not made in a vacuum. The authors allude to society’s “attitudes towards DS, and disability as a whole” but do not explain what those attitudes are.
We live in a society where people excitedly ask you if you’ve had your ultrasound yet. We live in a society where having an ultrasound is so routine that it seems to be less about screening for “abnormalities” than it is about “seeing” your baby for the first time and taking home a picture or DVD to show everyone. We live in a society where people say things like “I don’t care if it’s a boy or a girl, as long as it’s a healthy baby”. We live in a society where DS is widely seen as a disadvantage. We live in a society where most people have never met someone with DS, and – as the authors themselves point out – some health professionals do not properly understand what it’s like to live with DS. We live in a society where, even though only half of pregnant women choose to undergo screening, those who don’t opt for screening can feel like they have to (or are made to) justify their decision to others. They can be made to feel irresponsible, or they can be made to feel like they are making the wrong choice…
So I ask: does society offer a choice, or a routine procedure?
– N. Melody