2014 Predictions Scorecard: How’d I do?

Predictions 2013Last year, I made seven predictions of what 2014 would hold for Down syndrome prenatal testing. Let’s see how I did. 

  1. More women will undergo prenatal testing than ever before: since 2007, the professional guidelines have recommended that all women be offered prenatal testing. Given the marketing efforts of the non-invasive prenatal screening (NIPS) labs, namely Sequenom, Illumina (nee Verinata), Ariosa, and Natera, I expected more women to accept prenatal testing. Beyond the press releases from those same labs touting the increasing uptake of their tests, a study was published in 2014 that found a significant increase in women accepting prenatal testing, covered at this post.
  2. The NIPS labs will push for NIPS to be offered to all pregnant women: It didn’t take long for this prediction to prove true. In February 2014, Diana Bianchi led a team associated with Illumina and published a report in the New England Journal of Medicine arguing that NIPS should be offered to all women. The Society for Maternal-Fetal Medicine rapidly responded showing how, in fact, the study showed that NIPS should still be limited in being offered to only high-risk mothers.
  3. More women than ever will find out prenatally they are expecting a child with Down syndrome:  Given that prediction No. 1 bore out, then so, too, did this one. With more women than ever undergoing prenatal testing, more women than ever found out in 2014 that they are expecting a child with Down syndrome. 
  4. More women than ever will receive genetic counseling and accurate information about Down syndrome:  No study was published making this finding, but given the public policy efforts in five states that passed the Down Syndrome Information Act, facilitating accurate information being provided, it is likely that this prediction happened. Given that historically, less than 30% of women receiving a prenatal test result were provided educational materials, it does not take much for there to be “more” women receiving the recommended services and information.
  5. More women than ever will not receive genetic counseling and accurate information about Down syndrome: This predication, too, was a matter of logic: given that more women than ever will be accepting prenatal testing, and historically, the majority fail to receive the professionally recommended services and information, more women than ever will be left in the dark when receiving a prenatal test result. Considering that a report was published at the end of the year finding that women are choosing to abort their pregnancies based only on a NIPS result, which is not diagnostic and can have false positives, this prediction sadly came true. 
  6. There will be claims of wrongful birth: This certainly happened. A mother brought suit in South Africa for her son’s “suffering” for being born with Down syndrome which could have been avoided had she received prenatal testing and terminated her pregnancy with him. In perhaps a more egregious case for wrongful birth (egregious meaning a fact pattern that is almost beyond belief), a lesbian couple sued a sperm bank for providing a sample from an African-American donor; the lesbian couple is White. They are suing for emotional distress caused by raising their child in an all-White community.
  7. More selective abortions for Down syndrome than ever will be performed in 2014:  The number of selective abortions remains a blind spot in the research, at least in the United States. There is no central collection point for those numbers, or even reliable state-by-state data. However, a report published from the data maintained in European countries confirms that more women than ever are selectively aborting for Down syndrome. Given the report that women are terminating based on the maybe that is a MaterniT21, Harmony, verifi, Panorama, InformaSeq, or other NIPS result, it seems reasonable to believe that this same increase in the number of terminations is being experienced here in the United States.

Living in a town known for betting (on horses), being this accurate with my predications makes me wish I had placed a wager on them. However, given their results, I would have been happy to have lost that bet.

Unfortunately, I would not have.

Comments

  1. Sad. Luckily my kids (two have Down syndrome) are happy, and nothing brings them down. Mark, did you read the newly launched book ‘genetic discrimination’?

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