Who raises Down syndrome awareness at medical conferences?

ASHG Exhibit Hall 2013

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.

Comments

  1. Snap. Catch 22.

  2. Well done. Keep up the fight. How do we better question the underlying assumptions that lie behind all these new pre-natal screening tests i.e. that those humans are just not as worthwhile? I’ve always thought that it’s those presuppositions that need targeting because that the level where the real battle is won and lost.

    I made a video earlier this about the percentage of children with Downs Syndrome in the UK who are aborted after pre-natal testing gave a positive result. Please take a look and I pray it might spark some ideas with someone like yourself who has much more experience and a far better insight into the nature of the problem.

    Meet Matthew
    http://youtu.be/6fvTUupqLqE

    Also, it’s frightening to think of how many perfectly healthy babies will be killed because of error rates in the new technologies. The culture of death progresses.

    Thanks for the article.

  3. I live near Boston and would have come to man a table for Keep Infants with Down Syndrome, please let me know next time there is anything in this area.

  4. We had a prenatal diagnosis. I am SO GLAD we did. Our little one is nearly 6 mo old and still in the hospital. She was born 8 weeks early with a very rare defect which was detected in utero because of the extra care / screening provided in light of the prenatal diagnosis of T21 (via NIPT so as to avoid risking amnio). I cannot imagine how much harder it would be to cope with all of this if we had not had time to process this knowledge before we were actually in the thick of things.

    • Thank you for sharing your experience–it is needed to be heard.

    • Congratulations on your baby Lisa. Our Rebecca was born 8 weeks early too, un-diagnosed for us, and in a special care unit at the hospital for a long time. Most parents do cope, that strength and capacity lies within the human heart.

      I wish you and your family well as you embrace the joy and love of a new child in your life.

  5. During Down Syndrome Awareness Month, advocates push even harder to improve inclusiveness, and show just how much potential people living with the condition have. But it’s really the brave unstoppable people with Down syndrome, the ones who keep setting the bar higher and hitting each of their goals, who are showing the world how little they care about labels and how much they can achieve.

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