The power of context to create a Down syndrome prenatal testing epidemic

In his National Bestseller, The Tipping Point: how little things can make a big difference, Malcolm Gladwell identifies three elements to creating an epidemic, from the spread of disease to a social trend. With two of the three being built into prenatal testing for Down syndrome, the final element will determine the tipping point of whether prenatal testing becomes an epidemic.

The cover blurb from Fortune says “a fascinating book that makes you see the world in a different way.” Indeed, it does. Using case studies like the resurgence of the common Hush puppies brand of shoes as a hip choice in footwear and the popularity of the Nickelodeon TV show Blues Clues, Gladwell seeks to explain why some things take-off in the culture.

Gladwell identifies three critical elements to creating a tipping point for something to spread:

1. The Law of the Few: where a few are critical to spreading an idea, with individuals Gladwell describes as Connectors, Mavens, and Salesmen driving this law;
2. The Stickiness Factor: how much an idea “sticks” when people come across it; and,
3. The Power of Context: which effects how people behave.

With prenatal testing for Down syndrome, the first two are already built into the system. Professional society guidelines and statements require that obstetricians offer prenatal testing for Down syndrome to all of their patients. Non-Invasive Prenatal Screening (NIPS) companies are sending out sales representatives across the nation and advertising their NIPS brand in magazines and on-line. Expectant mothers who seek prenatal care will be offered prenatal testing by a Maven, their healthcare provider, with Salesmen touting its utility, making the idea easily “sticky.” This then leaves the Power of Context.

Gladwell explains how simple changes in environment can change behavior. This is the concept behind the “broken windows” theory of law enforcement: if a community doesn’t tolerate broken windows, graffiti, and litter, it sends a message that it also doesn’t tolerate more egregious crimes. As Gladwell writes, “it is possible to be a better person on a clean street or in a clean subway than in one littered with trash and graffiti.”

More influential then simply the external environment is the impact of other people in our environment. As Gladwell relays:

Once we’re part of a group, we’re all susceptible to peer pressure and social norms and any number of other kinds of influence that can play a critical role in sweeping us up in the beginnings of an epidemic.

After going through a litany of examples, from an outbreak of suicides among young boys in Micronesia, to simply jaywalking because you saw someone else do it, Gladwell concludes,

We are actually powerfully influenced by our surroundings, our immediate context, and the personalities of those around us.

Mothers’ experience with prenatal testing could serve as yet another example. From the not-so-subtle pressure suggested by the question “Didn’t you get tested?,” to mothers having to explain their decision to continue after a prenatal diagnosis, to the experience I shared in a previous post on a study that found some mothers who terminate do so even though they have strong views against abortion. All of these decisions happen in the context of how society views the proper use of prenatal testing, the decision these expectant mothers’ peer groups made about their pregnancies, and the views of the Mavens–their healthcare team–on prenatal testing for Down syndrome.

Women have wrote of how prenatal testing has caused them to be “moral pioneers,” and if they continue, “genetic outlaws;” how prenatal testing imposes the role of “The Responsible Mother” to ensure the best outcome for their pregnancy; and, how mothers who have given birth to a child with Down syndrome have felt stigmatized because prenatal testing is seen as a means for preventing their child from being born.

How does this context impact the ability to make an informed decision, if prenatal testing is justified ethically on the grounds of respecting a woman’s autonomy? With the first two elements of Gladwell’s Tipping Point already being imposed by the medical standard of care, does this context mean we are at the tipping point of an epidemic of prenatal testing?

If the reports of increased uptake of prenatal testing for NIPS is any indication, we may have already tipped. We may be at the start of an epidemic, but one where decisions will be made based on what are perceived societal norms and peer pressure, and not out of respect for a woman’s right to choose based on her values.

I’m curious what your experience was? If you were offered prenatal testing, were any of Gladwell’s elements present? What was the role of context in your experience?