Who raises Down syndrome awareness at medical conferences?

ASHG Exhibit Hall 2013

October is National Down Syndrome Awareness Month. Today, I head home from the largest annual convention for genetics. Who is raising Down syndrome awareness at these conferences?

The American Society for Human Genetics (ASHG) is celebrating its 65th year, making it the oldest national organization focused on genetics. ASHG is by far the largest conference focused on genetics.

The conference is being held at Boston’s Convention Center. There are over 6,000 attendees. I did not count, but there are rows and rows and rows of exhibitors. The picture above is just about 40% of the size of the exhibit hall (what I could fit in frame from the top of the escalator). Do you see that structure in the front–that’s an exhibit booth with a superstructure from which are suspended flat screen t.v.’s showing that exhibitor’s products. What’s not in frame is that over to the left is a bus–a full-size tour bus–from Life Technologies showcasing their lab equipment. Those are just two examples of the elaborate exhibit booths constructed to draw in attendees and show off the latest in genetic testing technology.

Every provider of non-invasive prenatal screening has an exhibit booth at ASHG. All of the companies are also either presenting, or giving a poster presentation, holding invite-only seminars, and having meetings and entertaining clients and attendees after hours.

All of these marketing dollars are being invested to raise awareness among practitioners about what each companies’ tests can do and why theirs is the one to be used. Presentations are made about its reliability and the expanding list of conditions it will test for (Sequenom just announced two days ago it was adding Angelman, Di George, and Prader Willi syndromes (and others)).

So, who is there to raise awareness about Down syndrome and the information to be provided expectant mothers?

We are. Stephanie and I from the National Center for Prenatal & Postnatal Down Syndrome Resources.  There are no other organizations.

Some question what’s the point of engaging the medical community. But, prenatal testing will continue to progress and be offered. The market was valued earlier this year at $1.6 billion and it will grow from there.

And, expectant mothers want that testing. Even those who have said it provides no value.

On the flight to the conference, I read a study about women who decided to continue their pregnancies and had received a prenatal diagnosis. The study was of 56 moms. Thirty (30) said

it was not valuable to have a prenatal diagnosis because it gave friends, family, and medical professionals the opportunity to stress the option of termination after they had decided to continue the pregnancy, added anxiety, stress, and sadness to the time they were pregnant, and it took the joy out of their pregnancy since they felt they were expecting a ‘diagnosis rather than a baby.'”

But, at the same time, 45 said that

if they could do it over again they would still choose to learn the diagnosis during pregnancy.”

Got that?

56 total moms in survey. 30 said having a prenatal diagnosis was not valuable. So the remaining 26 did not say it was not valuable. But 45 said they would do it over again. By the numbers that means at least 19 (or 33%, a third) said it was not valuable but they would still do it all over again!

The administration of prenatal testing will not be improved by ignoring or refusing to engage the medical community. There’s too much money to be made and women–even those who say it was not valuable–want prenatal testing. Every company is at these conferences marketing its testing. And, who is at the national conferences trying to provide the information so that hopefully fewer women will not experience such anxiety, stress, and sadness and so that medical professionals are providing balanced, accurate information about Down syndrome, not just the test result?

We are.

This blog is done in solely my personal capacity and all statements should not be attributed to the National Center or any other organization I am affiliated with. That said, if you support efforts to provide balanced, accurate information with a prenatal test result, you may make a secure on-line donation to the National Center at this link. We travel economy class, stay with friends, and I’ve become quite adept at Boston Public Transit, all to keep our expenses to a minimum. Your support is appreciated.