Webinar on new Down syndrome prenatal testing available now

Non Invasive Prenatal Screening NIPS BrandsOn Tuesday, Dr. Brian Skotko and I presented a webinar on the new prenatal testing for Down syndrome and resources for support organizations. You can watch it now on-line. 

Through the National Center for Prenatal & Postnatal Down Syndrome Resources, where I serve as the bioethics specialist, I had the opportunity to present with world-renowned expert Dr. Brian Skotko. We presented on the new prenatal testing: non-invasive prenatal screening. This is the testing offered in the United States by Sequenom (MaterniT21), Illumina/Verinata (verifi), Ariosa (Harmony), and Natera (Panorama).

Dr. Skotko explained the science behind the testing so that it makes sense how the testing has increased accuracy, but how it still has false positives and false negatives. I covered how 99.5% accuracy really means a 45.5% chance of having a child with Down syndrome (and if you learn better by listening than by reading posts like this one and this one, then you should definitely watch this webinar).

We concluded by sharing resources available for those going through prenatal testing and those supporting them, and then provided some proposed responses for groups fielding questions from members and the media about the new testing. There was an active Q&A in the last 15 minutes as well. A big thank you to those who were able to attend live on Monday for being such a great audience.

Through the National Center, the webinar is now available for viewing and listening on-line. Simply click this link: http://connect.uky.edu/p7fz9obenuu/.

I’d enjoy hearing what you thought, so leave a comment below. And, if you have a question, leave that in the comments, as well, and I’ll do my best to provide you an answer.

Comments

  1. I wish this was information was available when I was pregnant in 2012. I was offered the Maternit21 under false pretense by a GC after receiving a questionable sequential screening. Until today, I have a hard time understanding why a Healthcare Professional, Genetic Counselor would offer me another “screening” following a questionable Sequential “Screening” and not offer proper counseling along with it. My son was born with T21 after receiving a Negative result from the Maternit21 .

    • Jenn–I empathize with your frustration and confusion. My wife and I had an unconsented to false negative ultrasound scan during our daughter’s pregnancy. I appreciate you sharing the information from the webinar and my blog if you think it will help more moms understand the limitations of the new prenatal test for Down syndrome. I also hope that your son and you are both doing well.

  2. I would like to view and listen to the webinar, but I am unable to connect. I have attempted multiple times, but have not yet tried the thing necessary to be able to connect. Is there a trick?

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