Imagine you live in San Francisco and decide to move to Flagstaff, Arizona. You meet a friend one evening at a social event, and during your conversation, mention your intention to move. Your friend expresses horror at the idea (even though he has never been). “But why,” he says “would you choose to live in Arizona? It’s hot and filled with deserts.” “But…” you say, “I’ve heard it’s beautiful. Flagstaff has mountains, forests, and is near beautiful red rock canyons.” “But, Arizona!” he says. “Why Arizona? It’s a horrible state. It’s hot and filled with deserts.” Every time you meet this person thereafter, the same conversation takes place, and is even reinforced by others. Finally, you decide that you must have been wrong after all. You really don’t want to leave San Francisco and move to Arizona. “People think I’m crazy for wanting to move to Arizona. It must not be as wonderful as I thought.”
This is a paraphrase of a story told by the British actress Sally Phillips in her recent BBC documentary called, “A World Without Down Syndrome?” Ms. Phillips uses the story to illustrate an important point—that opinions and perceptions about Down syndrome, whether informed or not, often affect a woman’s choice to either abort or accept her child.
Ms. Phillips, the mother of a 12-year-old son with Down syndrome, made this documentary in response to a proposed new noninvasive prenatal screening program being hotly debated in Great Britain. Noninvasive prenatal screening (NIPS), more properly called “cell-free DNA testing,” is a highly accurate method of screening for Down syndrome that tests a sample of the mother’s blood for fragments of DNA from her baby present in her plasma. NIPS first became commercially available in the U.S. in October 2012. Researchers in England have developed their own version of the test that is already available in the private sector, but a battle has been raging between Down syndrome advocates who oppose the use of the test, and the National Health Service (NHS) that wants to offer it to all pregnant women in the U.K. as a part of routine prenatal care.
The positions expressed by the groups on either side of the debate are familiar. Down syndrome advocates fear NIPS will lead to more terminations and don’t believe that a diagnosis of Down syndrome should be a reason for termination. Even though many with Down syndrome attend regular schools, perhaps as many as 80 percent can learn to read with the right instruction, and many go on to develop skills that allow them to hold regular employment and live independently, there are those on the other side who believe their lives are not worth living. They believe that the “burden” of a child with a disability will be more than the family can bear.
What divides these two contentious groups is most often experience. Those who know Down syndrome most intimately are those with family members who have Down syndrome. They, like Sally Phillips, typically oppose termination after prenatal diagnosis because they know firsthand the joy a child with Down syndrome has brought to their families.
What creates this division is the fact that the choice to terminate is available at all and that it is even socially acceptable, if not expected.
Sally Phillips has been criticized for questioning this idea of choice. She wonders if it truly leads to greater happiness, but also asks the even greater question: Where will the choice to decide who lives and dies after prenatal testing ultimately lead humanity? If the freedom to choose who is born remains an individual and autonomous choice, as prenatal screening becomes less expensive, more accurate, and more comprehensive in terms of the disabilities that can be screened, society must think deeply about what it values, and its commitment to diversity.
But what about this idea of “choice”? The word itself implies autonomy in making a decision, and has become the insignia of the presumed “right” to abort a child. But are choices always freely made? Well, not always. Many factors may compromise one’s autonomy and influence one’s freedom to choose. In the case of disability-selective abortion, fear of the unknown, negative information and stereotyping of disability, social/cultural expectations, peer influence, and medical opinions are the big ones. Some individuals, as the film points out, even believe the choice to abort is an altruistic one because they are convinced their child would “suffer” if born with Down syndrome.
In one segment of the film, Ms. Phillips visits Iceland where the termination rate for Down syndrome following prenatal diagnosis is 100 percent. In a society where 100 percent of Down syndrome pregnancies are aborted, one must question what information is being provided to women to influence their choice. The expectation to terminate must be intense. What woman would dare consider another choice?
Just a couple of examples that question the autonomy of choice:
Jane Fisher runs the only prenatal counseling service the NHS provides for women in the U.K. called Antenatal Results and Choices (ARC). Prenatal counseling claims to be “non-directive,” in other words, a counselor must not attempt to influence a woman’s decision or suggest the choice she should make. This core principle is even mentioned in the vision statement at the ARC website.
However, is it really possible in human communication not to share some personal bias? Ms. Phillips asks Ms. Fisher how she would counsel her if she said she was concerned about how the learning disability would affect her baby. Ms. Fisher responds by asking Ms. Phillips how worried she is about that. Fisher says, “We won’t tell you you’ll be able to cope… We’ll say, ‘Do you feel you could continue the pregnancy and deal with that level of uncertainty, or do you feel that you need to end the pregnancy?’” Ms. Phillips then challenges Fisher by pointing out the gap in her logic by telling her that she mentioned intellectual disability and Fisher goes right to termination. Ms. Fisher bristles at being challenged, but has she been non-directive? Hardly.
A recurring theme in “A World Without Down Syndrome?” is that positive and unbiased information is key to women making a truly autonomous choice following a prenatal diagnosis.
With the advent of NIPS in the U.S. in 2012, advocates have insisted that women who receive a positive result for Down syndrome be given truly balanced information regarding the full range of outcomes of raising a child with the condition. They have been successful in passing laws in several states that require this information be provided. Short of a radical cultural shift in the perception of disability, we can only hope these laws are implemented well and that the excellent resources available are fully used by health care providers free of any bias.
“A World Without Down Syndrome?”, a BBC production, is not licensed to be viewed outside of the U.K. For those interested, a copy is currently available on YouTube. The film is very well done and raises important issues that need to be seriously addressed as prenatal screening technologies continue to advance and become available throughout the world.
Mark Bradford is president of the Lejeune Foundation USA.