There is little question that the new Non-Invasive Prenatal Testing (NIPT) is an advance in medical science. It is more accurate in detecting Down syndrome and other aneuploidies, with less intrusive methods than previous testing options. In Canada, NITP is funded in Ontario and British Columbia and is widely available in the UK. Proprietary tests are given names such as NIFTY, and many doctors and obstetricians are welcoming the medical advances. In essence, this testing option makes screening a safer and easier decision for expectant mothers.
Or does it?
It is important to distinguish between the safety and intrusion on pregnant women and the ease of the choice to screen for Down syndrome. The former can be welcomed, yet the choice to screen may be no less difficult. The underlying ethical question is not as much “How safe is the screening” as “Why am I screening?” Actress Sally Phillips‘ (Bridget Jones’ Diary) son Olly was born with Down syndrome 12 years ago, and she recently released a BBC documentary highlighting the difference between these two questions. A World Without Down’s Syndrome includes a number of thought-provoking and poignant moments. While medical professionals insist that it is not a matter of “screening out” people with Down syndrome, in the UK nine out of ten mothers choose to abort when they are likely to give birth to a child with DS, and in Iceland, that figure is 100%. Phillips wants to encourage expectant mothers “It’s really not a catastrophe. Why is everyone behaving like it’s a catastrophe?” The answer may lie in large part in how children with Down syndrome are described by medical professionals. One doctor describes people with Down syndrome as “A burden that lasts for a long time.” A couple who already had a daughter with Down syndrome were told upon a positive screening test for their second pregnancy, “She is really cute, but you don’t want another one like that, do you?” As Phillips reads through a long description of potential difficulties of DS provided to her from the National Health Service she remarks, “I think that just makes you frightened. A medical description will only list all of the possible things that could go wrong, and it’s not then compared with all of the things that could possibly go wrong with a typical person.” Phillips goes on to observe that Down syndrome is much more than a list of potential health problems, a list that would not describe any one of us adequately. “Down syndrome is a type of person, not a disease.”
The documentary is a worthwhile hour of your time. We look forward to hearing your comments!
The most controversial aspect of this documentary is not even that it challenges ability-selective abortion. It is, instead, that Sally Phillips questions one of the fundamental values of neoliberal society: that choice, in and of itself, is Good. Phillips chose to undergo prenatal screening with all three of her children. The results gave no indication that she would give birth to a child with Down syndrome, and yet Olly was born. In the documentary, Phillips meets with a woman who chose to terminate a pregnancy instead, based on positive screening. “She’s right that the choice is hers,” Phillips remarks, “…but I think she’s wrong that an increase in choice means greater happiness.”
Scientific and medical advances have proliferated the choices available to everyone, including expectant parents, but they have not given us any further insight into the ethical consequences of the choices we make. As one dad who picked his ‘perfect child’ through screening remarks in this film, “Science has no morality.” Søren Kierkegaard once wrote that “Anxiety is the dizziness of freedom.” In an age where freedom and choice are the highest goods, it is no wonder that we find ourselves in a state of deep existential and ethical anxiety. It is the most vulnerable among us who are the tragic casualties of our cultural ethical anxiety. Ironically, it is likely they who have the most to teach us about loving ourselves in all of our determined limits and imperfections.
We have previously released a series of posts on “Challenges to Personhood” that explores some of the underlying worldviews that undermine the value of life of people with intellectual disabilities. You can read about Philosophy, Bioethics, or Sociology – including plans to make Denmark a Down syndrome-free society. Suspending the Ethical: Autonomy, Disability, and Shalom is a paper I wrote for the Peace Studies Journal on the death-making practices of a culture of autonomy. To hear from a doctor who is seeking to change medical responses to disability at the end of life, check out this post. Finally, hear the incredible story of Michael and Lisa Gungor on their daughter Lucie who was born with Down syndrome .