The 2014 NSGC AEC in NOLA

Shape of the Eye

The author presents at the 2014 NSGC AEC

This week, I present for the first time at the National Society of Genetic Counselors Annual Education Conference. And, that’s not even the best thing.

Since 2008, I have submitted abstracts to present at the annual conferences for the professional medical organizations addressing prenatal testing for Down syndrome. Finally, persistence has paid off and I have been selected to present a poster at the NSGC AEC.

I will present my poster, Number 9, “Ethical patient care through financial means: requiring genetic counseling code for billing prenatal genetic testing,” Friday, September 19, 2014 from 2 – 3 pm. Here’s the three reasons why I’m so grateful for this opportunity:

1.  I will have the chance to meet and reconnect with so many people I have featured here on the blog:

  • George Estreich is presenting on the messaging in the marketing of non-invasive prenatal screening. I reviewed Estrich’s excellent book, The Shape of the Eye, at this post. I look forward to meeting him in person for the first time.
  • Katie Stoll was the first person I saw who had explained how the quoted 99+% accuracy rate of NIPS can still mean a “positive” result really only means a 50/50 chance for a 30-year old woman (and less than that for younger moms). I featured Stoll’s work at this post, one of the most viewed posts on the blog.
  • Megan Allyse is a bioethicist who has written extensively on the need for informed decision making in the context of prenatal testing. I featured Allyse’s work at this post.
  • Katie Sheets and Cam Brasington were key to the NSGC’s guidelines on delivering a pre- or post-natal diagnosis of Down syndrome. I have featured these guidelines in many posts because they remain the best guidelines of any professional organization.
  • Members of the Down Syndrome Consensus Group will be presenting with Stephanie Meredith, my colleague at the National Center for Prenatal & Postnatal Down Syndrome Resources, on Saturday at 8 am. I have had the opportunity to work with many of these leaders concerned about ethically administering prenatal testing for Down syndrome.
  • I will be meeting with several representatives of the NIPS laboratories and look forward to speaking with them in person at each of these medical conferences where they exhibit and I have the opportunity to present.

2. The NSGC AEC is in New Orleans, Louisiana. Being a Tulane Law alum, I always enjoy returning to one of my favorite American cities. Though this time it will be unlikely I have a chance to meet with my friends with Down Syndrome Association of Greater New Orleans, I will be glad to be back in their town and perhaps we will get a chance to connect.

3. My attendance is only made possible because of the generosity of donors who support the work at the National Center. Through the giving of others who believe in the mission of providing accurate information to new and expectant parents receiving a diagnosis of Down syndrome and other aneuploidies, I am able to attend these medical conferences; make connections; and hopefully help professionals who are caring for these parents.

If you would like to support the efforts of Stephanie and myself at assisting medical professionals in serving their patients with the resources recommended by their professional organizations, I appreciate you considering making a donation by clicking on the “Donate” button at the right hand column.

Thank you to those who have, and I look forward to seeing and meeting so many good people in New Orleans who are working to care for parents finding out their child has Down syndrome.

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