When receiving a test result from the new blood test for Down syndrome that says "positive," do patients understand there may be a one-in-five chance of a false positive? Or even a one-in-two, depending on the mother's age? Even genetic counselors admit this is difficult to grasp. Continue Reading
July 29, 2013
Accuracy of Down syndrome blood test remains unknown
It is coming up on two years since Non-Invasive Prenatal Screening (NIPS) was introduced. The New England Journal of Medicine recently featured an article raising concern over how the new blood test for Down syndrome is being used. It cautions against the new test being used in the general population. Continue Reading
July 25, 2013
Before we silence Down syndrome, shouldn’t we try to understand it better?
Reactions to the news of the researchers "turning off" the extra 21st Chromosome that is the genetic cause of Down syndrome continue to be shared. Yesterday brought the most concise explanation of the actual research and a question that has not yet been raised about it. Continue Reading
July 24, 2013
Down syndrome is not incompatible with life
I've talked about how receiving a diagnosis of Down syndrome can be a gut-punch. One that hits you. But, there are other perspectives on a Down syndrome diagnosis. Continue Reading
July 23, 2013
An incredibly complicated question … the most fundamental, existentialist question
Headlines and reporting continue to roll in on the news of scientists shutting off the extra 21st Chromosome in cells in a petri dish. In another column, a father ponders some of the same issues that have been on my mind with this news. Continue Reading
July 22, 2013
Blog hop: 3 (21) about Down syndrome
Powered by Linky ToolsClick here to enter your link and view this Linky Tools list... Trying to do this blog hop thing: One truth: there has never been a better time to be born with an extra 21st Chromosome than the 21st Century (TM). Life expectancy has more than doubled since the 1980's and individuals with Down syndrome have never before led such inclusive, full lives. One tip: connect with your local parent support organization. Not all affiliates (as they are referred to) Continue Reading
July 22, 2013
The role of community in dealing with loss
In his recent book, Rod Dreher shares the story of his sister Ruthie's final time on earth battling lung cancer and how it led him back to his small hometown in Louisiana. The book caused me to weep, and has a message worth sharing here. Continue Reading
July 19, 2013
Down syndrome needs to be “blocked,” “fixed,” “cured,” and “silenced.”
Following up on the news from yesterday, headlines reporting on the development where scientists have "turned off" the extra 21st Chromosome that is the basis for Down syndrome spread a telling message of what news editors think will grab the public's attention: Continue Reading
July 18, 2013
New research changes perspectives on Down syndrome
In an ironic twist, while traveling to present at a conference on prenatal testing and Down syndrome, news broke that they may have "fixed" Down syndrome. The reactions to this news may change perspectives on Down syndrome. Continue Reading
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