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

The Tipping PointIn 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? 

 

Comments

  1. You have been writing excellent articles recently Mark and you have really nailed it with this one. I think some countries have already tipped, the European ones particularly. Some are at at least at that point now, the US and the UK. Here in New Zealand we are holding the line at the moment, but we are the only ones who have really taken this on in a social justice sense with legal actions and others are yet to follow.

    I have been making these points for four years, but our community (in general terms) has not woken up to this to the extent that real steps haven’t been secured to turn it around. So we are at the point now where we have to accept the consequences of that.

    • Mike–I try to remind myself of a couple of things: [1] particularly given our experience with our children, persistent education eventually produces results; and, [2] Down syndrome is a natural part of the human condition for which science has yet to identify its cause; hence, there will continue to be Down syndrome pregnancies. Right now the lines are growing apart, but through persistent education, the lines of pregnancies and births may once again line up.

  2. STOPBULLYINGEXPECTANTMUMS: http://t.co/oDFbQFtil1

    STOPBULLYINGEXPECTANTMUMS
    stopbullyingmums.webs.com
    My name is Marie Ideson and I am wanting to pre warn expectant parents that what happened to me in 2004, could and will happen to other f…See more

    STOPBULLYINGEXPECTANTMUMS
    t.co
    My name is Marie Ideson and I am wanting to pre warn expectant parents that what happened to me in 2004, could and will happen to other families. From an early age we are told to trust the medical profession, but what I experienced

  3. I was conned lied and robbed of my little girl, ever since I have been trying to make public awareness, and will continue to do so, these professionals told me lie after lie and even offered to arrange the burial. If I had known what I know today I would not have any testing for Down Syndrome. I found out out on the 21st September 2004 that my baby would be Down Syndrome and by the 22nd September 2004 they had robbed me of her. I had only known one day, yet I was conned, lied and bullied.

    I even had my other three children with me, but that didn’t matter it just helped them to add the pressure. These tests are just helping to eradicate Down Syndrome int the UK.

    I have appeared in the Daily Mail and on the television programme This Morning, to tell people what happened to me. I did go on to have another little boy and did not have any tests at all, thankfully he is here and safe.

    These professionals had no consent at all for what they did to me, I will continue to make public awareness until I am heard.

Trackbacks

  1. […] So, the phrase “get our of our exam rooms” is catchy (or “sticky” as Gladwell says). Except, ACOG doesn’t mean it in every instance. When it comes to expanding coverage […]

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