The Ethics of Prenatal Screening
Prenatal testing has become a standard part of antenatal care in Australia. At about 12 weeks pregnant women are offered a relatively simple, elective scan which, combined with a blood test, can screen for common chromosomal disorders such as Down Syndrome. Although this screening test is elective few women choose not to have the nuchal translucency ultrasound. Even fewer decide to continue a pregnancy after chromosomal abnormalities have been detected. Recent Victorian studies suggest that the abortion rate for Down Syndrome is something like 95%.
I came across this information whilst doing research for a course I was teaching on human rights, gender and justice.
My students and I were exploring debates within medical discourse and feminist literature about reproductive freedoms and how they intersected with the rights of disabled people to exist on an equal basis with others. We looked at the history of state-run eugenics programs, the ways in which medical discourse privileged normalcy over what was regarded as abnormal, how a well-known bio-ethicist had looked at the ethics of prenatal screening through cost-benefit analysis, focusing on how much it cost the state when a child with Down Syndrome was born. We discussed the principle of freedom of choice that underpins our contemporary understanding of reproductive rights and considered what impact negative attitudes to disability might have upon a couple’s decision to terminate or continue with a pregnancy after Down Syndrome had been detected.
I asked my students to read an article about how decisions were made in pre-implantation genetic diagnosis (PGD). Using Hannah Arendt’s distinction between ‘who’ and ‘what’, the article argued that in PGD the decision to implant an embryo was often made on the basis of what a person is, rather than who a person could be. This was an important distinction for me and I asked my students to consider it in some detail.
The gist of Arendt’s argument is that whenever we describe ourselves or others in terms of determinate characteristics, our gender, race, intellect, height and so forth, we are referring to what someone is: they are male, female, black, white, Asian, slow, smart, athletic. Although we may feel that these categories summarise who we are, they actually turn us into objects; instances of more general categories. They also invite judgement, evaluation and measurement, because if we think of ourselves as examples of a more general category, we can be measured against others within that category, or even against an ideal type which we fail or succeed to emulate.
But who a person is, is something else entirely. It is our uniqueness, our capacity to surprise ourselves and others. It puts our value as a person beyond all measure, because something unique cannot be measured against a common standard that it fails or succeeds to meet. It just is. And who we are cannot be determined in advance (as quality appearing in a genetic test), because who we are emerges through the course of our lives, in the context of our relationships with others.
The article my students read argued that in PGD embryos were chosen for what they were, for determinate qualities that are assumed to produce better, healthier, more normal children. This reduced the child to an extension of parental expectation. I assumed that something similar was going on when parents made the difficult decision to terminate a pregnancy after receiving a positive a test for Down Syndrome. Many of my students agreed.
The discussions I had with my students about the ethics of prenatal testing were still present in my mind when I fell pregnant with my first child and when, at 12 weeks, my own nuchal translucency ultrasound showed that there was a high risk that my child had Down Syndrome.
The news of my results was communicated to me by phone. A specialist from RPA rang me on a Friday afternoon to tell me that I was at high risk of having a child with Down Syndrome. The number he gave me, which took me a few minutes to absorb, was 1 in 98. Upon reflection, that didn’t sound like a very high risk, but I barely had time to digest the information before he went on to tell me that another, more definitive test was available, but I would need to organise an appointment quickly so that if I did test positive for Downs I could organise a termination. He suggested that I get in touch with my GP, who could explain the different options in more detail.
This conversation left me confused, deeply upset and totally unsure about what I should do next. I had read enough to know that this doctor probably just had a terrible bedside manner, because medical professionals were not supposed to counsel either for or against a termination. However, that word, termination, and the urgency to make a decision about it, shook me. I sat in my office for a minute or so and began to cry. I spoke to my partner. I made an appointment with my GP and, soon thereafter booked myself in to get a CVS test which would, by taking cells from the placenta, give a definitive result.
The results from a CVS take about two weeks. In that time I saw a genetic counsellor, my GP and a number of specialists at RPA. At no time did any of the medical professionals offer any advice about what we should do if we tested positive for Downs. That was left up to us. However, every professional I saw seemed to assume that, given a positive result, we’d elect for termination. When I asked my GP how a termination at 14 or 15 weeks would be conducted, she was gentle and sympathetic. She explained what would happen and when she registered my concern she tried to be helpful. Yes, it would be hard to terminate your pregnancy at that stage. It was a difficult procedure to experience. But it was just one day. How could I compare one hard day to the lifetime of difficulty we’d face if we chose to raise a child with Down Syndrome?
In those two weeks during my first pregnancy, when we were waiting for the results of the CVS, my partner and I were left to consider some difficult questions. We spent a lot of time trying to get our heads around what we would do in the event that we were indeed carrying a baby with Down Syndrome. We thought about our families, what they would think and what kind of support we could expect from them. We thought about our future, what we had imagined for our family, and how this might change it. We discussed my career, and knowing very little about Down Syndrome, imagined that raising a child with Downs would mean one of us forsaking a career to be a full-time carer.
I also thought about the baby and spent hours just being with that strange, wonderful feeling of being pregnant. It had been almost 4 months. I had already bonded with my baby. I’d seen its picture in the scans and was very attached to the thought of becoming a parent. I wasn’t sure that I could let go of that as easily as the medical professionals seemed to assume I should. I thought about having a child with Down Syndrome and about the kind of person I was, that we were as a couple. Were we the sort of people who aborted a child because they were disabled? Or were we the kind of people who embraced a disabled child and the life that would follow?
I didn’t have a very clear sense of what that life would be, but a close friend, whose family had been pioneers in establishing vocational programs for intellectually disabled adults assured me that children with Down Syndrome could grow into mature, independent, richly rewarded adults. I was grateful to hear something positive about living with disability after so many vague references to a life defined by struggle and sacrifice.
After two weeks we received the results. They were negative, so we never had to make the choice. However, when I became pregnant with my second child and once again tested as high risk for Down Syndrome, my partner and I knew that we didn’t require further testing. We would carry the baby to term irrespective of the results, so we didn’t need to know.
Becoming a Parent
There were a number of things that had changed in our lives between my first and second pregnancy which made the decision not to know much easier. Since having my first child I had become involved with L’Arche, an organisation where intellectually disabled adults live in community with others. I had gotten to know a number of intellectually disabled people and through L’Arche had seen how rich, complex, troubled and touched their lives could be. When I allowed myself to daydream about a life shared with an intellectually disabled person, I could see an adult child of mine living in a welcoming community surrounded by people who loved and respected them.
But most importantly I had become a parent. I knew what it was to cherish a child and knew that my love for my son wasn’t conditioned by any particular qualities he possessed: the presence or absence of health or disorder. It was simply a response to who he was.
Who he is
When Rufus was still very young a friend asked me what I saw when I looked into Rufus’ eyes during those quiet moments when I held him in my arms. What did I see? I was surprised to find that I couldn’t answer him. It seemed obvious. I saw Rufus. But what did that mean? It felt like I was selling the seriousness of his question short. I struggled to come up with something more specific, less vague, something that would capture the intimacy, fullness and innocence of what that look contained. I couldn’t.
It took some time to realise that my struggle to answer my friend’s question was not indicative of a failure of my imagination or powers of description. My response, I see my son, I see Rufus, was an honest account of what I saw when I held my son’s gaze. I saw him. Incomparable. Totally and utterly himself. Rufus.
There were no qualities that stood out to me, because I wasn’t thinking of him as a boy, or a baby, or a nice looking child or even a child who looked a lot like his father. I didn’t see his future or mine. I just saw him.
When I reflect on what I felt during those quiet and tender moments I also have a better sense of what parents mean when they talk about ‘unconditional love’. I used to think that unconditional love meant something like the contractual vows people exchange when they get married: ‘in sickness and in health, until death do us part’. But now I understand that it isn’t just a statement about the enduring nature of love and its capacity to survive adversity. Unconditional love also describes the source from which love springs. I don’t love Rufus for any of the qualities in him that I admire: his puppy-dog enthusiasm, the deeply absorbed way he plays with his toys, or the cheerful, unselfconscious chatter he keeps up when he is playing by himself. I cherish these things about him, but they are not the reasons for my love. My love could never be reduced to any of that. In fact, I can’t really say why I love him, only that I do.
Who we are
When I think back to that brief period in which myself and my partner were trying to muddle our way through the dilemma of whether or not to raise a child with Down Syndrome, I can see that we had been engaged in full-scale projection. We were trying to make a decision about our family based on a predetermined idea about what kind of child a baby with Down Syndrome would be and what kind of parents we would be to that imagined child. I was a caring person, so surely I’d make a wonderful parent to a disabled child. I wasn’t very patient, so how could I possibly accommodate a child with special needs? I valued my career, my personal freedom, how could I raise a child who may never leave home? Wouldn’t I end up resenting my situation? Surely I did/didn’t have the strength to face such a task!
At every turn I ran into another set of predetermined categories, another series of objects into which I wanted to stuff myself, my partner and my unborn child. The effort to know in advance where each pathway might lead left me feeling overwhelmed. Lost.
What we didn’t foresee, and couldn’t have known, was that who we were as parents would only emerge with the birth of our child, and with the gradual unfolding of who he was. It would be a response to him, a response to our relationship with him.
Recalling my routine 12 weeks scan and the series of tests that followed it, I can see an understandable, but misplaced anxiety. I was worried about what the prenatal test would tell us about our child. But what I realise now is that although a prenatal diagnostic test can tell you something about your child, it cannot tell you who your child will be. Nor can it tell you who you, as its parent, will be. That has been a constant and ever renewed surprise.