Test may put Down syndrome pre-borns at risk
July 29, 2019 at 12:37 p.m.
“Can a New Blood Test Make Babies with Down Syndrome Disappear?”
This was the frightful question posed by the simple, direct headline atop an article that appeared Jan. 13 on the healthland.time.com website, an online section of Time magazine.
For two months, I’ve been trolling the Internet looking for other American media outlets to weigh in on the subject in a similar, well-considered manner, only to come away frustrated.
So far, it seems, this piece by Bonnie Rochman, which can be found at http://healthland.time.com/2011/01/13/can-a-new-blood-test, is the only one which presents a great deal of information and the implications involved in advancing this new blood test.
Developed in Hong Kong, and tested in Europe – where the press coverage has been overwhelmingly positive – and expected out next year, the new test can spot Down syndrome through fetal DNA shed into the mother’s blood stream. It is still being tested.
Overseas, the “simple blood test” is being touted as an approach that can be given earlier and help women avoid the more extensive procedures currently available which sometimes result in fetal death.
Those articles give not one jot of attention to the fetal deaths enumerated in Rochman’s story.
“Various studies,” she writes, “have shown that when women receive a definitive diagnosis, up to 90 percent choose to terminate their pregnancies.”
She notes that while most women do not elect to undergo today’s definitive and expensive tests – amniocentesis and chorionic villus sampling (CVS) – experts expect that will change when the blood test is ready for mass market.
There is speculation, she writes, that the test will “likely be offered to all women as a cost-effective method of detecting Down syndrome.”
Unlike other writers, she took the step of seeking comment from Brian Skotko, a doctor in the Down syndrome program at Children’s Hospital Boston, who also chairs the clinical advisory board for the National Down Syndrome Society.
She noted that in 2009, Skotko published an article in “Archives of Disease in Childhood” that showed a 15 percent decrease in births of babies with Down syndrome between 1989 and 2005 in the U.S., something he attributed to more sophisticated prenatal screening.
Since age of the mother is a factor in Down syndrome pregnancies, and since women are having children later, Rochman wrote, it would have been “realistic to expect a 34 percent increase in (Down syndrome) births…”
In the Time article, Skotko expressed concern that when a test such as this one hits the market, doctors – who get little medical education about those with intellectual disabilities – won’t be able to adequately counsel women about the realities of having a Down syndrome child.
He raises the “open question” of whether they and children with other chromosomal conditions will simply disappear.
“It’s a question of which forms of life are valuable,” Rochman quotes him as saying.
And indeed it is.
Since the news of this test broke, my weekly visits to an area supermarket have been even more introspective. I shop there at least once a week because a young woman I’ll call “Sandy” works there.
Sandy has Down syndrome. She also has a most disarming and frank manner, a keen sense of humor and biting insights about life in general.
Usually, I bag my own groceries, but at this supermarket, I get in “Sandy’s” aisle just to experience her energy and her observations.
Without a weekly dose of Sandy, life would be less meaningful and less compelling.
Through her stamina, her strength, her ease in enjoying all of us, and yes, her obvious understanding that she is different and no less worthy, she opens a window on the world as God created it. I’m thankful every week for that view.
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“Can a New Blood Test Make Babies with Down Syndrome Disappear?”
This was the frightful question posed by the simple, direct headline atop an article that appeared Jan. 13 on the healthland.time.com website, an online section of Time magazine.
For two months, I’ve been trolling the Internet looking for other American media outlets to weigh in on the subject in a similar, well-considered manner, only to come away frustrated.
So far, it seems, this piece by Bonnie Rochman, which can be found at http://healthland.time.com/2011/01/13/can-a-new-blood-test, is the only one which presents a great deal of information and the implications involved in advancing this new blood test.
Developed in Hong Kong, and tested in Europe – where the press coverage has been overwhelmingly positive – and expected out next year, the new test can spot Down syndrome through fetal DNA shed into the mother’s blood stream. It is still being tested.
Overseas, the “simple blood test” is being touted as an approach that can be given earlier and help women avoid the more extensive procedures currently available which sometimes result in fetal death.
Those articles give not one jot of attention to the fetal deaths enumerated in Rochman’s story.
“Various studies,” she writes, “have shown that when women receive a definitive diagnosis, up to 90 percent choose to terminate their pregnancies.”
She notes that while most women do not elect to undergo today’s definitive and expensive tests – amniocentesis and chorionic villus sampling (CVS) – experts expect that will change when the blood test is ready for mass market.
There is speculation, she writes, that the test will “likely be offered to all women as a cost-effective method of detecting Down syndrome.”
Unlike other writers, she took the step of seeking comment from Brian Skotko, a doctor in the Down syndrome program at Children’s Hospital Boston, who also chairs the clinical advisory board for the National Down Syndrome Society.
She noted that in 2009, Skotko published an article in “Archives of Disease in Childhood” that showed a 15 percent decrease in births of babies with Down syndrome between 1989 and 2005 in the U.S., something he attributed to more sophisticated prenatal screening.
Since age of the mother is a factor in Down syndrome pregnancies, and since women are having children later, Rochman wrote, it would have been “realistic to expect a 34 percent increase in (Down syndrome) births…”
In the Time article, Skotko expressed concern that when a test such as this one hits the market, doctors – who get little medical education about those with intellectual disabilities – won’t be able to adequately counsel women about the realities of having a Down syndrome child.
He raises the “open question” of whether they and children with other chromosomal conditions will simply disappear.
“It’s a question of which forms of life are valuable,” Rochman quotes him as saying.
And indeed it is.
Since the news of this test broke, my weekly visits to an area supermarket have been even more introspective. I shop there at least once a week because a young woman I’ll call “Sandy” works there.
Sandy has Down syndrome. She also has a most disarming and frank manner, a keen sense of humor and biting insights about life in general.
Usually, I bag my own groceries, but at this supermarket, I get in “Sandy’s” aisle just to experience her energy and her observations.
Without a weekly dose of Sandy, life would be less meaningful and less compelling.
Through her stamina, her strength, her ease in enjoying all of us, and yes, her obvious understanding that she is different and no less worthy, she opens a window on the world as God created it. I’m thankful every week for that view.
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