a book review of
Choosing Down Syndrome:
Ethics and New Prenatal Testing Technologies
by Chris Kaposy
(The MIT Press, 2018)
This article first appeared in the Christian Research Journal, volume 41, number 5 (2018). For further information or to subscribe to the Christian Research Journal please click here.
In Choosing Down Syndrome: Ethics and New Prenatal Testing Technologies, Chris Kaposy, associate professor of Bioethics in the Faculty of Medicine at Memorial University Newfoundland, argues that advancements in less invasive prenatal testing will increase the use of those tests and produce a greater number of occurrences of selective abortion in cases of Down syndrome diagnosis.1 As the father of a son with Down syndrome, Kaposy encourages people to resist the overwhelmingly preferred option of abortion and choose to allow their children with Down syndrome to be born. His position fits quite naturally within what philosopher Christopher Kaczor of Loyola Marymount University terms the inclusive view of human value.2 This is the view that all human beings are valuable at all stages of development by virtue of our shared humanity. Kaposy, however, argues from the perspective of an outspoken pro-choice advocate who believes the human fetus is not the kind of organism that can be wronged, and women should be free to choose abortion without interference of the state or community. He crafts his argument starting from the positions that (1) there is no compelling reason to limit access to noninvasive prenatal testing and (2) there is nothing intrinsically wrong with killing any human fetus under normal circumstances.
Information vs. Attitude. The first claim appears uncontroversial; there is no good argument to limit access to noninvasive prenatal testing. It is true that people use the information from prenatal testing to wage war against preborn children with Down syndrome. Kaposy quotes multiple sources to provide a range of selective abortion in the United States as somewhere between 60 to 90 percent in cases of a prenatal diagnosis of Down syndrome and 89 to 95 percent in the United Kingdom.3 Nations such as Iceland and Denmark report abortions nearing 100 percent of all preborn children diagnosed with Down syndrome.4 Knowing that possibly nine out of ten people use their preborn child’s diagnosis as a justification for abortion raises concerns, especially as a simple maternal blood test now makes it easier to attain that information. Even so, Kaposy argues that the problem is not the information but a deeply flawed view of the quality of life enjoyed by both people with Down syndrome and their families. He encourages an increased focus on genetic counseling as opposed to restrictive policies.
Defending Positive Testimony. Kaposy counters the narrative in support of selective abortion for Down syndrome, that the quality of life for both the child and the families is much lower than the norm and people with Down syndrome are consigned to a life of limitation, by offering memoir accounts of parenting children with Down syndrome and objective data that demonstrates claims of diminished quality of life are not merely overstated but misrepresent the truth entirely. This book is a valuable resource to counter the narrative that says Down syndrome produces a life not worth living. He addresses a series of justifications grounded in functional and utilitarian arguments and makes the case that the best available evidence, whether memoirs or objective data gathered in broader studies, indicates that those living with Down syndrome report being happy with their lives (99 percent).
Evidence also indicates that families love their children or siblings with Down syndrome (99 percent of parents and 96 percent of siblings), are proud of them (97 percent of parents and 94 percent of siblings), and claim they helped them reprioritize in the healthiest sense of that word.5 Though it is common for a grieving process to emerge at the time of the diagnosis, memoir accounts indicate people grew to see those initial feelings of sadness and loss as indications of being unhealthily consumed with material or superficial concerns.
Kaposy argues that parenting a child with Down syndrome helps people to live consistently within deeply held views on intrinsic parenting virtues that may have been less understood without that relationship.
The lengths some go to characterize the selective abortion of people with Down syndrome as a good clearly frustrates Kaposy. Some reject outright or assume skeptical views of the optimistic testimony of people with Down syndrome and their family members. They see positive reports as a form of adaptive preference comparing them to people who express contentment in objectively horrible circumstance, including an odd reference to the fictional character Tiny Tim from Dickens’s A Christmas Carol as the poster boy for adaptive preference.
Kaposy doesn’t hide his displeasure at the manner of argument presented by scholars Helga Khuse and Peter Singer in their book Should the Baby Live? The Problem of Handicapped Infants. He demonstrates that even as they wrote their book in 1985, there already existed a growing body of evidence to undercut their claim that it was wrong to choose to parent a child with Down syndrome. Kaposy exposes selective use and misrepresentation of evidence, examines the influence of idealizing white-collar employment on our attitudes, and contextualizes too many other objections to list with both the sophistication of a scholar and a passion fueled by his relationship with his son.
The Problem with Kaposy’s Wrongness Theory. The book takes a problematic turn with his argument on why it is wrong to selectively abort a fetus with Down syndrome. The obvious answer that a preborn child with Down syndrome is fully human and it is simply wrong to kill an innocent human life because it fails to genetically live up to our expectations is not available to him. As an advocate for a woman’s right to abortion, he attempts to develop a theory of wrongness in regards to this particular motivation for abortion.
He grounds that wrongness in three major categories: (1) selective abortion hurts mature people with Down syndrome by perpetuating a false belief about the nature of their lives, (2) it harms the individuals making the decision to abort because this decision conflicts with important core beliefs about virtuous parenting and unconditional love, and (3) it amounts to an action born out of bias fed by a reductive view of the identity of a person with Down syndrome, seeing them only through the lens of Down syndrome.
Kaposy claims as long as a woman aborts because she does not want any child, or, as he words it, can’t have any child at this moment, then abortion carries no moral component to it whatsoever. She simply refuses to enter into a parental relationship with the life growing within her. The problem, according to Kaposy, begins when a wanted pregnancy turns into an unwanted pregnancy the moment a diagnosis of Down syndrome is announced. This means that the justification for selecting abortion isn’t the wholesale rejection of a parental relationship but a particular wish not to parent a child with Down syndrome. That, he argues, is wrong.
Kaposy recognizes that someone could accept all of those wrongs as true (contributes to unhealthy culture surrounding Down syndrome, acts in competition to intrinsic parental values, and operates from bias) and still not feel compelled morally to allow a child with Down syndrome to be born. He admits people will criticize him for his inability to find an actual “ought” in his arguments,6 which ultimately come across as a strongly worded suggestion of best practices. He is too pro-choice to condemn an abortive act as wrong in principle, so he is left to construct a narrow set of circumstances where it is wrong because it harms all sorts of people in all sorts of ways except of course the actual human life destroyed through the abortion.
It is refreshing to read an admitted secular liberal fighting for the acceptance of a category of human life that is being eradicated through eugenic selective abortion practices, even if he would reject that understanding of his endeavors. It is entirely consistent with Christian ethics to call for the end to reducing any member of the human family to one nonessential part of their whole and embracing them as fully human. He is to be commended on that count.
Odd Rant against Capitalism. Unfortunately, Kaposy transitions into a full-throated condemnation of capitalism as failing to create the necessary infrastructure to fully welcome people with Down syndrome as equal members of society. He quotes Marx and Engels, insisting that it isn’t time for a proletariat uprising quite yet, but in order to be fully behind humanizing people with Down syndrome, we must come to terms with the deficiencies of capitalism.7 This is all the more odd considering an earlier chapter detailed how society moved past particular prejudices and created a culture that treats mature people with Down syndrome increasingly better.
Kaposy never identifies an existing alternative economic system that demonstrates a laudable and repeatable track record of compassion toward people with Down syndrome. He refuses to consider or imagine how capitalist systems might generate the kind of financial resources and charitable empathy to inspire people toward opening our society in a new way. In fact, the final section of the book is subheaded “The Evils of Capitalism and Selective Abortion.”8
The book is both admirable and flawed. While Kaposy crafts a compassionate and deeply felt argument supported by data and first-person reports, it lacks sufficient moral grounding to create real obligation. It is a winning book while equipping advocates to defend the quality and value of life of people with Down syndrome. Then Kaposy ran out of optimism and moved into uncompromising condemnation. He does not condemn the people actually choosing selective abortion. No, he condemns capitalism as the bad guy in this tale. Not only is that a completely unsupported assertion but it robs the whole endeavor of the best quality it had going for it: an optimism that people can change their attitudes toward those with Down syndrome born out of his love for his son. — Jay Watts
Jay Watts is founder and president of Merely Human, an organization defending intrinsic human dignity.
NOTES
- Chris Kaposy, Choosing Down Syndrome: Ethics and New Prenatal Testing Technologies (Cambridge and London: The MIT Press, 2018).
- Christopher Kaczor, The Ethics of Abortion: Women’s Rights, Human Life, and the Question of Justice (New York and London: Routledge 2015).
- Kaposy, Choosing Down Syndrome, 4.
- Grace Carr, “CBS Says Down Syndrome Is Disappearing in Iceland, but Here’s What’s Really Happening,” The Daily Caller, August 15, 2017, http://dailycaller.com/2017/08/15/cbssays-down-syndrome-is-disappearing-in-iceland-but-heres-whats-really-happening/.
- Kaposy, Choosing Down Syndrome, 63–64.
- Kaposy, Choosing Down Syndrome, 123.
- Kaposy, Choosing Down Syndrome,
- Kaposy, Choosing Down Syndrome, 165.
