A pamphlet supposed to be for post-diagnosis must discuss prenatal testing?

Indianapolis, host city for 2014 NDSC convention

Indianapolis, host city for 2014 NDSC convention

At least that’s what it’s creator says.

This is a bit of a post script, but I thought it an important enough point to devote a blog post to it.

Previous posts analyzed the public representations for why the National Down Syndrome Congress (NDSC) and the Global Down Syndrome Foundation (GDSF) created a pamphlet after the Lettercase materials had already been identified as the materials to be provided to expectant moms. The analysis showed that none of the stated reasons were justified:

  1. Free: the pamphlet is free; the Lettercase materials are, too.
  2. Updatable: the pamphlet is supposed to be easily updatable; the Lettercase materials have been updated sooner than the pamphlet.
  3. Mention prenatal testing: it was important to GDSF that the pamphlet cover prenatal testing, but the representatives of the professional medical organizations that set the standard for prenatal testing asked that prenatal testing be removed from the Lettercase materials because that was a discussion for the doctor and the patient (this stated reason is the focus of this blog post); and,
  4. Termination: the NDSC said they didn’t think their organization should counsel patients that prenatal testing allows for the opportunity to terminate, even though its website has and continues to do so as of this writing.

Okay, so every stated reason doesn’t actually apply. But, in researching what GDSF and NDSC have had to say about point #4, I found out something interesting about point #3, covering prenatal testing:

The NDSC/GDSF pamphlet is supposed to be given post-diagnosis.

Again, that’s not my position. It’s the publicly stated position of GDSF as recently as Friday, July 18, 2014 (and perhaps even today if GDSF hasn’t revised their website).

It’s GDSF’s pamphlet

While the website for GDSF announces that it has “partnered” with NDSC to create this pamphlet, the pamphlet is nowhere to be found on NDSC’s website. At the 2014 NDSC convention, it was plainly referred to by Michelle Whitten of GDSF that the pamphlet was “our” pamphlet, meaning GDSF’s pamphlet.

So, what does GDSF have to say about it’s pamphlet? Below are screen shots from the GDSF website:

GDSF PT diagnosis2

And at the Frequently Asked Questions section:

GDSF PT diagnosis3

Got that? GDSF is committed to ensuring women receive accurate information “at the point of diagnosis” and “[m]any testing companies and doctor’s offices will be providing this pamphlet at the point of diagnosis.” Which begs the question:

If it’s to be provided at the point of diagnosis, then why cover prenatal testing at all?

Follow along with the logic:

  1. GDSF is committed to ensuring women receive accurate information at the point of diagnosis;
  2. Many labs and doctors will be providing the pamphlet at the point of diagnosis;
  3. At the point of diagnosis, prenatal testing has already been completed.

So, why did GDSF say at the NDSC convention that it’s important that the pamphlet cover a process that is to be finished when the pamphlet is to be provided?

And why has NDSC partnered with GDSF with a pamphlet that covers only Down syndrome in connection with prenatal testing, since that violates NDSC’s position on prenatal testing?

NDSC: highlighting Down syndrome in prenatal testing materials is discriminatory 

When ACOG changed the standard of care such that all women were to be offered prenatal testing, NDSC issued a position statement condemning the change. One of the main reasons for NDSC’s condemnation was that it considered ACOG’s highlighting of Down syndrome discriminatory.

At NDSC’s website, there are position statements under the “About” tab:

NDSC position statements

Scrolling down, is the position statement on prenatal testing, prompted by ACOG’s guidelines issued in 2007. The NDSC objects to the way the ACOG guidelines are written because by highlighting Down syndrome the guidelines are discriminatory:

NDSC position statement3

NDSC’s position is that it is discrimination because the other conditions recommended to be offered to expectant women for testing receive only a “cursory mention” while Down syndrome “appears to [be] single[d] out.”

Yet, the GDSF prenatal testing pamphlet concerns only Down syndrome. It should then be expected that NDSC is not supporting a pamphlet that singles out Down syndrome in discussing prenatal testing because that would violate its own position that that singling out is discriminatory.

Conclusion

I mention all this because it again refutes the third stated reason for why NDSC/GDSF created their pamphlet: because GDSF wanted a pamphlet to cover prenatal testing, but was to be given after a diagnosis when prenatal testing was complete, and singles out Down syndrome in violation of NDSC’s position statement that such singling out is discriminatory.

None of the stated reasons are justified. So why did GDSF create this pamphlet?

The (hopefully) final post in this series next week will explain the impact of the pamphlet’s creation.

Comments

  1. Very good point. Why waste the space on things that have already been done? I have two theories (without seeing the materials in question)
    1. If the test was a “screening” that presents some false positives then amino/cvs info should be provided so people don’t terminate without a more accurate test.
    2. If the testing companies are going to distribute the materials (which is the most cost effective-expeditious-complete distribution method) then they want a mention to make it worth their while.

    That’s my two cents and your concerns and questions are valid!

    • Sandra–your first point is correct, which is why Lettercase created a pamphlet with the input of genetics counselors (as recognized by the National Society for Genetic Counselors) that covers screening and diagnostic testing. And, I agree with NDSC’s position statement that highlighting only Down syndrome in a written product about prenatal testing is discriminatory, which is why the Lettercase pamphlet covers multiple tested-for genetic conditions, and feature photos of individuals with Down syndrome, but also photos of individuals with Turner syndrome and Trisomy 13. Regarding your second point about testing companies distributing the pamphlet, only one company–Sequenom–has ever distributed the pamphlet, but did so with their existing marketing materials highlighting the benefits of its MaterniT21 test.

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