Yesterday, Governor Steve Beshear signed into law Senate Bill 34, referred to already as "The Down Syndrome Information Bill." The bill was patterned after a 2012 Massachusetts law. It requires that any health care professional or facility that delivers a Down syndrome diagnosis, prenatally or postnatally, also provide the family with up-to-date, evidence-based, written information and the contact information for national and local support programs and services, specifically listing Down Continue Reading
March 12, 2013
So many choices: what does each do & how much do they cost?
Next week, I travel to Phoenix to give a poster presentation at the 2013 Annual Meeting for the American College of Medical Genetics (ACMG). I receive a daily invitations in my inbox to visit the booth for one of the manufacturers for the new Non-Invasive Prenatal Testing (NIPT). But what does each test test for, and how much do they cost? Continue Reading
March 7, 2013
How to deliver a Down syndrome diagnosis?
With the advances in prenatal testing and guidelines recommending prenatal testing be offered to all expectant mothers, more Down syndrome diagnoses are being delivered than ever before. But how should a Down syndrome diagnosis be delivered? Fortunately, there is a very helpful resource that is also a professional guideline by those who should know best. Continue Reading
February 27, 2013
The need for care and support
This past weekend was the Down Syndrome Affiliates in Action conference. Consistent with past years, the schedule featured sharing sessions and breakouts on best practices for medical outreach and new and expectant parent support. With the advances being made in prenatal testing and research showing that the need for care and support is a key factor for expectant mothers making a decision following a prenatal diagnosis, this information is needed now more than ever. Continue Reading
February 18, 2013
Getting ready for the Down Syndrome Affiliates in Action conference
What should you do if you are attending the Down Syndrome Affiliates in Action Annual Conference? Continue Reading
January 9, 2013
An Open Letter to NDSS, NDSC, and GDSF: Answers Still Needed
It has been over 40 days since the open letter to NDSS, NDSC, and GDSF was posted seeking answers to a few questions. Tweets to the organizations and an e-mail to the leadership of each organization with a copy of the open letter provided also were sent. The holidays, understandably, may have interfered with a response being provided. With the start of the new year, just as 2012 began, questions remain as to what the national plan is, and, specifically, the questions asked in the open letter Continue Reading
January 8, 2013
Does it matter if nature has a moral authority?
Spring cleaning suggests that is the season when cleaning gets done. But, as an attorney, the holidays often provide a lull where we can bring some order to the stacks of papers that have accumulated throughout the year. In doing so, I found a study that I read quite some time ago, but is one that I think you will find of note. The article's title is "Women's views on the moral status of nature in the context of prenatal screening decisions," and its authors are Elisa Garcia, Danielle Continue Reading
January 7, 2013
We Know Not What We May Be
During the winter break, I tried spending as much time as possible with my family. I treasure how, at the start of December, the day after we put the Christmas tree up, my daughter came downstairs, threw down both her hands, and, exasperated, said, "Daddy--where are all the presents?!" A recent post by Amy Juila Becker got me thinking about an ancient lesson revealed in this the holiday season. Amy Julia is an author, a blogger, and a mother of three. Her oldest, Penny, happens to have Down Continue Reading
November 21, 2012
Giving Thanks: For those who get to know those with Down syndrome
Happy Thanksgiving! For those going through prenatal testing for Down syndrome, let us give thanks for those who make the effort to get to know more about Down syndrome. Continue Reading
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