Narrative ethics: the power of story in prenatal testing for Down syndrome

This week has brought a confluence of evidence to me showing the power of story in delivering a Down syndrome diagnosis.

For most of human history, wisdom was passed on in the narrative form: the morality tales of the Greek myths, Socrates’ dialogues, the Torah of the Old Testament. And, it remains so today. Guides on public speaking or persuasive argument (things I pay attention to as both a public speaker and a civil litigator) highlight the value of telling a story to make your point. There is just something about us that is wired to reach a deeper meaning when something is told to us in the form of a story. (Indeed, Donald Miller, an author I quote often, has established a conference and life-planning tool premised on organizing your life according to the elements of story).

Narrative ethics is premised on this innate human predisposition to be attuned to the elements of story. The ethical theory is that if we can understand the background of the individuals involved in a bioethical situation, the context of the situation, and the external forces on that situation, then telling the story of the situation will lead us to what is the “right” result for that particular situation. Often the case studies concern euthansia and whether a person’s values make ending life support consistent with the story that person has written of their life. But narrative ethics is not limited to that end-of-life scenario, and, certainly, it can be applied to the other end of life, the very beginning, the prenatal context.

Unfortunately, the story of how prenatal testing is administered is not a good one.

I’ve recounted in multiple posts the dissatisfaction mothers express with how the delivery of a Down syndrome diagnosis was a shocking one, told coldly, even rudely, and leaving them feeling alone. This experience is well-documented. But, this week, three separate pieces of evidence gave further support to the importance of story in how parents process a Down syndrome diagnosis.

The first was this week on Tuesday. I presented with my colleague Stephanie Meredith at the National Association of Councils on Developmental Disabilities. We shared a breakout sessions with a mom and staff member for the Oregon DD Council, who presented on their efforts to support family networks throughout the state. One of the reasons cited by the staff member for the need for family support networks was the story of how a young mother received the diagnosis for her daughter in central Oregon in 2005. The only written information she received was a black-and-white copy of materials that had been copied and re-copied so much it was barely legible. It shared an outdated life expectancy and referred parents to placing their children in state-run institutions that had been closed for years. It turns out, the materials were copyrighted 1966 (!). The mom told the nurse never to give that information out to any other parent and, along with another mom who gave birth that same day, they created a binder of updated information and parent stories that parents now receive . They then went on to found their own parent support organization that supports families in central Oregon.

The second was on the flight home from D.C. Many of my readers have been generous supporters of my speaking efforts at conferences like the NACDD. One benefit of attending these conferences is the forced solitude of airline travel, providing me an opportunity to catch up on research. One study I read surveyed moms of children with Down syndrome to find out what they thought about the newest form of prenatal testing, non-invasive prenatal screening. The study made several findings, butrelevant to this post was the juxtaposition in the impact these moms expected NIPS would have and the role it played in the impact. Here are the key results from the abstract:

Many respondents felt NIPT could lead to increased terminations (88 %), increased social stigma (57 %), and decreased availability of services for individuals with Down syndrome (64 %). However, only 16 % believed availability of new noninvasive tests would be the most important factor in determining the number of pregnancies with Down syndrome terminated in the future. Additionally, 48 % believed health care providers give biased or incorrect information about Down syndrome at the time of diagnosis, and 24 % felt this incorrect information leads to terminations of pregnancies affected with Down syndrome. Results suggest although mothers of children with Down syndrome believe new noninvasive testing will lead to an increase in termination of pregnancies with Down syndrome, they do not think it is the MOST important factor. They also highlight the need to provide a diagnosis of Down syndrome in a balanced and objective manner.

As I’ve written before, prenatal testing, in and of itself, simply provides information. The surveyed mothers recognized that. However, prenatal testing is administered by individuals, with all of their faults, ignorance, and biases. The surveyed mothers recognized this as well and cited that–the biased and incorrect information–as being the reason to expect more abortions. Again, the power that story has in shaping what is one of the most critical decisions made by any mother.

The third bit of evidence on the role story plays came from a blog post from yesterday posted by Leticia Keighley, mom to Wade, a world contender for cutest toddler. Keighley writes about her life with Wade and recently asked readers what impact, if any, sharing her story had had on them. Reviewing the many comments, Keighley writes:

A common thread that came through the responses was about finding stories that speak to us. A personal story can move us in a way that facts and figures just can’t. We can read all the stats we like about improved quality of life and health outcomes for people with Down syndrome or how encouraging meaningful work options makes good economic sense for everyone but nothing gets a message across like reading about the reality of a situation through the eyes of someone who is living it. No matter how different our lives may feel, reading a personal story can make us find common ground we didn’t think existed but it can also help rationalise overwhelming thoughts when we read about others walking the same path as us.

Keighley is exactly correct on the power of story to connect with parents. It is why the National Society for Genetic Counselors and the American Academy of Pediatrics recognize in their guidelines that expectant parents benefit from being told personal stories from fellow parents.

But, again, too often this is not done. Instead, parents are given materials from 1966, or they are given nothing, and they are left to be alone to find their way.

The way prenatal testing is currently administered is a bad story because it is an incomplete story. We’ve all had that experience where we’ve sat through a movie, read a book, or listened to someone tell the story and feel like the story never reached a satisfying conclusion. With prenatal testing, too often, parents are left with the narrative device of a cliffhanger: a highly emotional moment left unresolved because nothing else, or worse only negative information, is shared with the shocking diagnosis. This is a disservice to expectant parents.

We need to tell a better story with prenatal testing for Down syndrome.