Questions RE: Down Syndrome Prenatal Testing Being an “Essential Health Benefit”

In a longer piece to be published later, I explain how the Department for Health & Human Services (HHS) has issued a proposed regulation where prenatal testing for Down syndrome will likely be covered as an essential health benefit (EHB) under the healthcare reform law, aka “Obamacare.” HHS is accepting comments on the proposed regulation through December 26, 2012. So, this Boxing Day, please celebrate with me by submitting a comment on the proposed regulation. Below is the text of the Continue Reading

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

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

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

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

“The Gradual Trap”–Informed Consent Process: Understanding

In the first post on the Informed Consent Process, I discussed the element of voluntariness. This week's post concerns the element of "understanding" and is prompted by the recent ACOG guidelines on NIPT and an article from this Spring that introduced the notion of "the gradual trap" in the context of prenatal testing. As a reminder, the new ACOG guidelines on NIPT recognize NIPT as a valid testing method for those women considered "high-risk." Many, if not most, of those women will meet that Continue Reading

“These attributes do not define those we love.”

On the right side of the homepage, you'll see a scroll of my twitter feed. Unlike common uses of twitter, I do not update my followers where I'm eating dinner or what I think of the movie I'm watching. Instead, most all posts are links to news reports about Down syndrome. I invite you to follow the feed to see the news of the day. Some articles, however, are deserving of a larger exposition than the 140-character limit of Twitter. An article from last week is just so deserving. Dominic Continue Reading

Breaking News: ACOG Issues New Guidelines on NIPT

Since the 1990's, when fragments of cell free fetal DNA (cffDNA) were found in the mother's blood stream, researchers have been on a quest for what is regularly termed "The Holy Grail" of prenatal testing: a diagnostic test from just a mother's blood sample. If the fetal DNA could be identified and tested, then the fetus' genetic code could be diagnosed. Mothers (and practitioners) would be able to receive a diagnosis without risking miscarriage, as must be done with current diagnostic tests, Continue Reading

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