Is non-directiveness in prenatal genetic testing a myth?: Gladwell’s Blink and implicit associations of Down syndrome

Gladwell BlinkOn Sunday, 60 Minutes profiled author Malcolm Gladwell on his new book about underdogs. In a previous book Blink, Gladwell explored how we think without thinking. His writing explains why some people laugh at the notion of non-directive counseling about prenatal testing.

In 2012, Case Western held a reunion of sorts for scholars, health care providers, and ethicists who had convened twenty years earlier for a conference about women and prenatal genetic testing. That original conference resulted in a book on the same subject, which is now available in full, for free, at this link.

Video of the conference from 2012 is available through the Case Western website. If you care to, you can watch it in its entirety (and see your author asking several questions of the presenters). The presentation and discussion with the attendees discussed how prenatal testing remained justified ethically on the basis of respecting a woman’s ability to make informed decisions about her pregnancy. But, near the end, Edward Pergamente, a long-time physician and author on the issues surrounding prenatal testing, asked, “is non-directive counseling even possible,” which was greeted with a knowing chuckle by presenters and attendees alike.

Non-directiveness is supposed to be the ethical bulwark that prevents the field of genetics from crossing over–and repeating–the atrocities of eugenics. Whereas eugenics was predicated on elites directing which genetic traits were desirable, genetic professional provide the mother information, who then makes the decision whether to selectively terminate in accordance with her personal values. Or so the theory goes. But Pergamente’s question and the knowing laughter at the conference suggests that non-directiveness, while perhaps useful in theory, is near impossible to attain in practice.

Gladwell’s book, Blink, provides further explanation for why non-directiveness may be a myth, at least in actual practice.

Gladwell reports on numerous examples where experts were able to make a correct judgment in a short time period: an art expert concluding that a sculpture is a fake after a simple viewing, despite many others having ruled it an authentic relic from thousands of years ago; a police officer explaining why, despite all apparent indicators suggesting danger, he decided deadly force was not necessary in a given situation; and so on. Gladwell develops the idea of “thin-slicing:” that we make snap decisions all the time based on small slices of information made on a first impression. But, as Gladwell shares, there is a dark side to thin-slicing.

IAT is an Implicit Association Test. In an IAT, words and images are flashed and the test-taker makes split-second clicks on the keyboard assigning a word or an image to the “good” category or the “bad” category. In the IAT test on Race that I took, words included “good,” “love,” “unpleasant,” and “awful.” The words were interspersed with images of the faces and last names for individuals representing the various races, White, Black, Asian, and Hispanic. Along with some other questions, then a score is given showing what your implicit association is with certain races. Even if you believe yourself to be a racially-inclusive/color-blind kind of person, as Gladwell writes of himself, you will still be surprised at how certain associations of words that are “good” come quicker for you to click with some races versus others. You can try it for yourself at this link; it only takes about 12 minutes.

For all the academic and professional statements about non-directiveness in prenatal counseling, what thin-slicing and IAT reveal is that subconsciously we hold certain associations, and particularly negative ones, for certain conditions. In the case of Down syndrome, in the medical context, this has been revealed in a number of ways.

In a study of physicians and parents of children with Down syndrome, the two groups were asked what they considered essential for parents to know when receiving a prenatal diagnosis. While there was overlap, they shared different priority rankings. For parents living with a child with Down syndrome, they felt it was important for parents to know their child would be more like other children than different; for the medical professionals, they prioritized the health conditions associated with Down syndrome. In another study of written materials provided to patients about Down syndrome by medical providers, it found that only 2% of the statements could be graded as positive, while 91% were graded as neutral or negative.

These results really just reflect the lens through which Down syndrome is seen. By parents of children with Down syndrome, the thin-slice of a diagnosis of a genetic condition is exactly that: a thin slice–one characteristic of the multitude that makes up their child, who, by their lived experience, is more like other children than different. For medical practitioners, seeing a patient in a medical context of a clinical visit, the thin-slice of a diagnosis of Down syndrome has the implicit association with a medical condition not considered optimal; not what their patient came to see them for; not the news their patient wants to hear; and, so it cascades into focusing on the medical condition in a negative light.

Moreover, medical professionals report at high percentages that they would choose to terminate following a prenatal diagnosis of Down syndrome. This, too, is informed by the context in which medical professionals have risen to their professional position.

As Gladwell writes of positive associations occurring when viewing the faces of White people:

You don’t choose to make positive associations with the dominant group. But you are required to. All around you, that group is paired with good things. You open the newspaper and you turn on the television, and you can’t escape it.

As applied to medical professionals, they have excelled throughout school, so that they can go to college, excel there, to go on to medical school, where they seek to excel over their peers in their academic studies of complex classes like human anatomy, pharmacology, and, for prenatal testing, obstetrics or genetics. Then, they enter the work force, where they are rewarded with making partner in their clinic or receiving higher pay and positions of authority with the hospital(s) they are affiliated with, based, again, on excelling at an incredibly complex profession. This is what their dominant group is: everyday watching others and judging them (even if its subconsciously) based on how well they are performing in a profession that demands intellectual excellence. And, then they are faced with a diagnosis of Down syndrome.

How else can they implicitly associate Down syndrome, but with shutting off the avenue that they have chosen as the fulfillment of their professional life? How else can that diagnosis not be seen but in some way as a negative? And, hence, you have studies finding an emphasis on medical complications, heavily weighted in favor of negative statements, and, a study of physicians that found a significant percentage agreed with statements that individuals with Down syndrome should be segregated in special schools and increase the risk of danger in the work place. But that same study also corroborates the remedy Gladwell writes of to address these implicit negative associations with the minority group.

Our first impressions are generated by our experiences and our environment, which means that we can change our first impressions–we can alter the way we thin-slice-by changing the experiences that comprise those impressions.

We do this beyond just a mental and personal commitment to change; but, as Gladwell prescribes, “It requires that you change your life so that you are exposed to minorities on a regular basis and become comfortable with them and familiar with the best of their culture. … [It] requires that we take active steps to manage and control those impressions.”

Indeed, this is what is proposed by medical guidelines for prenatal testing for Down syndrome. It is not sufficient to simply deliver a test result for Down syndrome, for that by itself is weighted with implicit meaning based on the lived experience of the patient and the physician. Rather, professional medical guidelines also recommend providing the written and on-line resources available at the Prenatal Resources tab and the guidelines acknowledge that referral to parent support organizations and sharing positive family stories can be very helpful for patients. Because this accurate information and knowledge of families living their lives raising a child with Down syndrome serves as the needed active step to manage and control the pre-existing impressions the patient and healthcare provider have when considering prenatal testing.

Gladwell features a story in Blink about a french horn player to demonstrate the risk of relying on pre-conceived notions.

A french horn player was auditioning for an orchestra. The player was known to the audition judges, having actually played in the orchestra previously. But the player had been denied advancement because this french horn player was a woman. The pre-conceived notion was that women lacked the forcefulness to be the featured brass instrument player. But, in the audition, the player played behind a screen, so the judges could only form their opinions based on the quality of the music played. When the screen was removed, the judges were shocked to see it was someone they already had heard play. As Gladwell writes,

When the screen created a pure Blink moment, a small miracle happened, the kind of small miracle that is always possible when we take charge of the first two seconds: they saw her for who she truly was.

Prenatal testing is the opposite screen: the full child is hidden, within the womb; all that is known, or what becomes the focus, is the first impression made by the diagnosis of Down syndrome. How that condition is presented, what is emphasized, how it is described, is slanted by the implicit associations of the health care provider and the patient. Without the active step to provide balancing information, non-directiveness truly is a myth, and the bulwark to protect genetics from repeating the atrocities of eugenics falls.

Comments

  1. Oh my goodness, Mr. Leach, this is fabulous and so helpful as a teaching tool. My daughter and her husband live in Taiwan. My son-in-law is Chinese and my daughter grew up there for 12 years when we were missionaries. They just had their fourth precious little boy, and he has DS. I just spent a month with them and learned so much about the 96% percentage rate of abortions for mothers who were told their unborn child had DS. My daughter is asked by virtually every Taiwanese person she meets, including every doctor but one so far, why she didn’t have an abortion. There is absolutely NO remote possibility of non-directiveness in that country that we love. Our grandson being born for “such a time as this” is not lost on us, and we can only imagine what his growing up in Taiwan may mean in helping to reverse a trend that is now being called “an attempt to wipe-out an entire segment of a population.” Thank you for this article.

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