Medical organizations and bioethicists justify prenatal testing out of a respect for a woman’s autonomy, her ability to control her reproductive choices. But society’s view of prenatal testing can undermine that freedom. A recent Salon article adds to the evidence for this concern.
Rachel Adams teaches English and American Studies at Columbia University. She also is Henry’s mother. Henry has Down syndrome. In her recent column in Salon, she shares the experience of raising Henry in a world that regularly challenges why he is here. Her column is titled “Didn’t you get tested?”
It is a question parents of children with Down syndrome are often asked. The availability of prenatal testing for Down syndrome renders lives with Down syndrome optional. Through prenatal testing, an expectant mother can discover whether she is carrying a child with Down syndrome and then terminate in lieu of carrying that child to term. This is the option chosen by most women following a prenatal diagnosis, even in countries where abortion isn’t available.
With the advances in both prenatal testing and coverage for it, the question Adams faced is all the more understandable. Prenatal testing companies highlight how their testing is more accurate and available sooner than ever–before a pregnancy begins to show. And, prenatal testing costs are often covered by insurance or through public-funds in states, like California, which have a prenatal testing program.
Prenatal testing is available sooner than ever; is more accurate than ever; and, is available at no or low-cost. Plus with screening tests and NIPS, it poses no risk to the fetus. Why wouldn’t a mother choose to accept prenatal testing? And, with prenatal testing available sooner than ever, when abortion is safest for the mother and can be performed before a mother has shared the news of her pregnancy, why, then, are children like Henry here?
The question posed to Adams, while distressing, is unfortunately not a new one.
Even before NIPS and the increase use of CVS, i.e. when amnio was the main form of diagnostic testing, and therefore performed in the second trimester when the pregnancy has become more apparent, the question of whether a mother with a child with Down syndrome had had prenatal testing was still being asked.
Adams’ column is the corollary to the the columns that were published after the development in prenatal testing before NIPS was introduced. Five years ago, it was the then-new first trimester screening test called nuchal translucency. At that time, Patricia Bauer, a columnist for the Washington Post, who is also a mother to Margaret, shared her experience.
Like Henry, Margaret has Down syndrome. Bauer shares how over twenty years ago, she was at a public playground with Margaret. A mother of another child noticed Margaret, and then said to a fellow mother, “isn’t it a shame that everyone doesn’t get amnio?”
Not, “what a beautiful child?” Or, “well, everyone’s choice should be respected?” But, at a playground, looking at another child, a mother judged another’s choice, believing that every child like Margaret and Henry should be aborted.
This is the normative effect of prenatal testing. Prenatal testing is justified on the basis that women have a right to reproductive freedom and the information it provides allows them to exercise that freedom over whether to continue their pregnancy. But, as it becomes available sooner, to more women, with reduced risks, and at no- or low-cost, then more women have been accepting prenatal testing. And, as they do, and as medical organizations recommend its offering to all women, then prenatal testing becomes less of an option. Instead, it becomes an “opt-out” protocol in pregnancy, where women do not proactively seek prenatal testing, but rather are asked to sign documentation noting that they were offered prenatal testing and opted out of it. One mother who chose to continue after a prenatal diagnosis was even described as a “genetic outlaw” for not following the societal norm.
Accepting prenatal testing becomes seen as the norm, and then it becomes seen as something that should be done because it is the norm. Women’s reproductive freedom to decline prenatal testing, or to accept prenatal testing but choose to continue after a diagnosis, then become abnormal–just as children with Down syndrome are labeled and considered abnormal. And, so, women’s reproductive freedom of choice is eroded as it becomes socially acceptable to ask another mother, upon seeing that her child has Down syndrome, “Didn’t you get tested?”
A radio show host asked me what questions and comments a new mother with a baby with Down syndrome didn’t want to hear. “Did you get tested?” was number one. It implied that you failed in your duty to prevent a child like mine from being born when the nurse asked me this in the hospital. When I told her I refused testing, she refused to wheel me and my baby out of the hospital.
I am the mother of 3 children; the eldest has Down syndrome (no, I refused testing), the middle one also has Down syndrome (yes, I did have testing) and the youngest one doesn’t. I guess I (we) belong to that 10% of people who do not simply do ‘the thing to do’ but follow our own hearts and minds. This is what I would like to instill in my 3 children too; be yourself and be proud if you stand out from the crowd.
And, hopefully, patients will be advised that they get to make a choice about whether to have testing or not, as you did, making a different decision with your first and second child; so that accepting testing will not be presumed, but the result of an independent, informed choice by the mother.
I know that in the medical world pregnant women are often referred to as ‘patients’, but wouldn’t it be lovely if they are just referred to as ‘pregnant or expecting women’. Mark, thank you for all your work, writings, caring.
As we discussed today, I write and think about this a lot. And it still makes me want to throw up.