We Know Not What We May Be

Shakespeare_WeKnowWhatWeAre

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 […]

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Is Prenatal Testing for Down Syndrome an “Essential Health Benefit”?

In a previous post, I posted the comment I submitted that is due on December 26. This post provides a fuller explanation of the proposed regulation and the reasons for my comment. I invite you to submit your own comment on the proposed regulation. Read on to find out why. With the election over, the […]

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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 […]

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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 […]

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Verinata’s Prenatal Testing Flow Chart: Unethical?

VerinataFlowChart

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 […]

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A Review of Andrew Solomon’s New Book: Far from [what] tree?

FarFromtheTree

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, […]

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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 […]

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“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 […]

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“These attributes do not define those we love.”

Domenica Lawson with her godmother, Princess Diana

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 […]

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