What’s in a (noninvasive) Name?

Nearly four years into the use of this new prenatal screening test, and the medical community is still trying to figure out what to call it.  When Sequenom first launched the MaterniT21 screen for Down syndrome in 2011 this type of testing was labeled “Noninvasive Prenatal Diagnosis” or NIPD.  This was coupled with a tremendous amount of hype that NIPD would replace the need for invasive diagnostic testing such as amniocentesis.  It didn’t take too long before we realized that to include “diagnosis” in the test name was overstated, so the name was soon dialed back to “Noninvasive Prenatal Testing” (NIPT).  But many, most notably the American College of Medical Genetics and Genomics (ACMG), suggested that calling this “testing” did not go far enough to highlight the limitations and proposed that this technology be referred to as “Noninvasive Prenatal Screening” (NIPS).   The Prenatal Information Research Consortium recently has used the term, Noninvasive Prenatal Genetic Screening (NIPGS).

Many in the field have discomfort with any name that includes “noninvasive” as the word, in and of itself, implies that this test should be compared to invasive tests and not to other screening tests.  Aren’t all previously available aneuploidy screening tests (first trimester screening, sequential screening, Quad screen, etc.) noninvasive after all?

Recent publications from the Society of Maternal Fetal Medicine (SMFM) and the American College of Obstetricians and Gynecologists (ACOG) refer to the test as something along the lines of, “aneuploidy screening with cell free DNA (cfDNA)”.  This solves the “noninvasive” issue however all stated it is quite a mouth full.  Additionally, it will be technically problematic as the list of screened conditions moves beyond aneuploidy.  And to call it only “cfDNA screening” may be confusing as new applications beyond prenatal screening are developed for cfDNA, such as the emerging ‘liquid biopsy‘ for cancer.

The National Society of Genetic Counselors (NSGC) Prenatal Special Interest Group recently surveyed members regarding what they call this test. This survey  found that NIPT was the front runner with 45% of the vote as compared to 31% using NIPS and 23% using cfDNA.  Another question to consider is:  what name are patients most familiar with? Our survey of patient forums reveals that many patients seem to know these tests by specific brand names, which may be attributed to the successful direct to consumer marketing campaigns of the testing companies which prompt patients to “ask your doctor for the Harmony/verifi/Panorama/MaterniT21 Plus test by name!” Anecdotally, many patients have come to know this test as simply, “that new gender test”.

Developing educational resources regarding prenatal tests is a high priority for Genetic Support Foundation.  As we developed content for our website and a patient education video about the NIPT/NIPS/NIPGS/cfDNA test, we spent a lot of time debating what to call this technology.  We ultimately landed on NIPT for two reasons:

  1. Genetic Counselor Survey Results– Based on the recent NSGC  survey, NIPT is the term most used  by genetic counselors.
  2. Social Media Review– we knew we wanted to use social media to promote our resources and information about this test, and NIPT seems to be the most used in that realm.  There is a good reason for that.

In the past, I have been a strong advocate for the term noninvasive prenatal screening.  I would always pronounce each individual letter N-I-P-S. Recently at a genetics conference, I heard someone call it “Nips” and my jaw dropped.  How had I failed to make the connection between the NIPS acronym and a slang term for a body part?  The connection was set when I searched for #NIPS on twitter.  Needless to say, I didn’t find much about prenatal screening – but instead found a lot of people talking about cold weather, underwear (or lack thereof), and photos of non G-rated fashion!  A crash course in the importance of word choice for social media to be sure!

So for now, GSF has made the decision to stick to NIPT, but we will stay flexible and see where this interesting ride takes us.  Who knows, maybe some day when we type in NIPS in a twitter  search something G-rated involving prenatal screening will be near the top of the list.

While we have you here, take a moment to check out our video on NIPT, which began our inner turmoil on what to call this test.   We believe  this video provides a good overview of the testing – what it can and cannot tell you and also what women should think about prior to deciding whether or not to undergo NIPT, NIPS, NIPGS, cfDNA testing or whatever the heck you call it :-).

-Katie Stoll

 

P.S. After watching the NIPT video please complete the post-viewing survey!

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