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
December 6, 2012
In Memoriam: Donna Lee Preston, An Unexpected Life
On the “About Me” page, I mention that I am involved with several organizations devoted to serving individuals with intellectual disabilities. A week ago, a member of one of those organizations passed away. Her name was Donna Lee Preston, and she lived an unexpected life. Donna was born in another era for individuals with Down syndrome. She was raised in a time when institutionalization was the medically-recommended option following birth and before the modern era of early intervention, Continue Reading
December 4, 2012
Verinata’s Prenatal Testing Flow Chart: Unethical?
As I’ve mentioned before, on the home page there is a scroll of my twitter feed. Like this blog, I typically tweet about news related to Down syndrome and/or prenatal testing. But, sometimes Twitter’s 140-character limit is not enough to provide a thorough analysis of ethical issues. Verinata is a laboratory that developed its version of non-invasive prenatal testing (NIPT), which has the brand name "verifi." Featured on its website is the following decision-making flow chart for prenatal Continue Reading
December 3, 2012
A Review of Andrew Solomon’s New Book: Far from [what] tree?
Andrew Solomon's new book, "Far From the Tree," has been receiving a lot of coverage lately--and deservedly so. But, his final assessment begs the question: "Far from what tree?" Solomon's title sums up the contents of his weighty tome. Ten of the twelve chapters are devoted to a single condition each, e.g. Chapter 2, Deaf, Ch. 5, Autism, Ch. 11, Transgender. The title comes from Solomon's assessment that children born with differing conditions than their parents are in some fundamental way Continue Reading
November 28, 2012
An Open Letter to NDSS, NDSC, GDSF on Down syndrome prenatal testing resources
Global Down Syndrome Foundation (GDSF) and the National Down Syndrome Congress (NDSC) recently announced the publication of a pamphlet for patients going through prenatal testing for Down syndrome. It sparked discussion through a blog post by Dr. Brian Skotko, which was soon responded to in a joint press release by GDSF, NDSC, and the National Down Syndrome Society (NDSS). This is an open letter from concerned parents, professionals, advocates, and Down syndrome (DS) support group leaders who Continue Reading
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