Posted on 09/12/2011 4:22:41 PM PDT by wagglebee
Prenatal testing for Down syndrome should not be considered preventive medicine. Such tests cannot prevent the presence of Down syndrome in a child; but they can decrease the likelihood of a child with Down syndrome surviving beyond the womb. Expectant parents need accurate information, including the many positive outcomes, about life raising a child with Down syndrome.
Last month, my daughter Juliet began second grade, where her mother and I expect her to maintain her B+ average on spelling tests and straight A’s in Chinese. In addition to being a loving daughter and big sister, Juliet also is endowed with Down syndrome. At the start of the month, the Department for Health and Human Services (HHS) announced that future births of children like Juliet should be prevented. Down syndrome is the most common genetic cause of intellectual disability and, as such, will be targeted in the new HHS regulation’s free nationwide prenatal testing program.
Discussions of HHS’s new regulation have focused on the required availability of free contraceptive services under the Patient Protection and Affordable Care Act (PPACA). The regulation is the result of HHS’s adopting, in its entirety, the Institute of Medicine’s (IOM) report on Clinical Preventive Services for Women. Buried in the IOM report is the recommendation for no-cost well-woman visits; these visits include prenatal care–and thus prenatal testing for “genetic or developmental conditions.” The regulation was issued as part of the PPACA’s coverage of preventive services. This prompts the question, how does prenatal testing prevent Down syndrome?
The IOM report defines preventive services “to be measures . . . shown to improve wellbeing, and/or decrease the likelihood or delay the onset of targeted disease or condition.” Down syndrome occurs at conception. Prenatal testing simply identifies whether a pregnancy is positive for Down syndrome–a prenatal diagnosis after which most women choose to terminate their pregnancy. A prenatal test does not decrease the likelihood of Down syndrome in a person; it does allow for a decreased likelihood of a person with Down syndrome surviving beyond the womb. If this is how HHS is justifying prenatal testing for Down syndrome as preventive care, then HHS has ushered in a program meant to target future children like Juliet.
The targeted elimination of people with Down syndrome is, in fact, the goal of other countries that have adopted nationwide prenatal testing programs–a goal some other countries are now realizing. Indeed, according to the Copenhagen Post, Denmark “could be a country without a single citizen with Down’s syndrome in the not too distant future,” due to its nationwide prenatal screening program, in place since 2004.
Perhaps the HHS is not purposefully trying to sneak in a modern-day eugenics program to eliminate Down syndrome by regulation. It is likely that the IOM report relied on professional guidelines that recommend the offering of prenatal testing for Down syndrome. Actual experience, however, has shown that such tests do not “improve wellbeing”–certainly not for the aborted child, but also not for the expecting parents.
Robert Resta, a Genetic Counselor, notes in August’s American Journal of Medical Genetics that “there is very little empirical evidence that prenatal knowledge improves medical, developmental, emotional, or adaptational outcomes.” Further, studies have found that prenatal testing increases the mother’s anxiety, regardless of the test results; that women often do not make informed decisions about accepting prenatal testing or decisions made after a diagnosis and that, when abortion is the chosen response, a significant number of women experience post-traumatic stress.
The lone dissent to the IOM report by a committee member makes the point that clinical guidelines “were never intended to provide a basis for insurance coverage determinations; they are intended as guides to physician practices.” Yet, if the IOM’s incorporation of such guidelines is the HHS’s justification for covering prenatal testing, then why does HHS not provide for the other information required to accompany prenatal testing?
The IOM report states that informed decision-making “is structured to give an individual all the information needed to choose from among different clinical options, such as whether to undergo genetic testing.” Professional guidelines require that physicians be well-informed about Down syndrome, offer accurate information, and recognize that parent support organizations can be very helpful. This summer, the National Society for Genetic Counselors and the American Academy of Pediatrics required that this balancing information be part of prenatal care. Both further note that families “benefit from hearing a fair and balanced perspective, including the many positive outcomes of children with Down syndrome and their effect on the family.”
The need for this information is so apparent that, in 2005, two senators from opposite sides of the abortion issue, Senators Ted Kennedy and Sam Brownback, co-sponsored legislation that recognized the need to provide accurate, balanced information and support by parent organizations. In 2008, the Prenatally and Postnatally Diagnosed Conditions Awareness Act was signed into law, but it has yet to receive any appropriations. Similarly, the HHS regulation only requires coverage of the testing itself, but says nothing about covering the provision of proper training, accurate written materials, or support to or through parent organizations–things that could, in fact, improve the parents’ and child’s wellbeing after receiving a prenatal diagnosis.
It seems hard to believe that Congress and the President meant for the PPACA to institute a national prenatal screening program that targets Down syndrome and also fails to provide all of the required information to expectant mothers. Sen. Mikulski introduced the provision for preventive services for women, yet she was also the lead sponsor of Rosa’s Law, a law that replaces “mental retardation” with “intellectual disability” in federal publications. Rosa’s law was named after one of her constituents, who, like Juliet, happens to have Down syndrome. Further, given that HHS’s regulation not only encourages prenatal testing’s discrimination against Down syndrome, but also disrespects a woman’s exercise of informed choice, it is unlikely that members of the bipartisan Congressional Down Syndrome Caucus would allow the regulation to remain in effect.
Prenatal testing for Down syndrome should not be labeled as preventive medicine–an inaccurate and misleading description of a procedure that may prevent Down syndrome births, but certainly does not prevent Down syndrome. A regulation should not be allowed to target a portion of our society for elimination without public debate by accountable elected officials. If the regulation is to remain in place, then additional funding should be provided for all the information required to respect a woman’s choice following a prenatal diagnosis. The President and the Congress should see that the new HHS requirements for preventive care expressly exclude coverage of prenatal testing for Down syndrome unless and until there is public debate and balanced funding for the needed resources.
You can help them do that by leaving a comment on this new regulation here.
LifeNews.com Note: Mark W. Leach is an attorney from Louisville, Kentucky. He serves on the Board of Directors for Down Syndrome of Louisville and Down Syndrome Affiliates in Action, a trade association of local parent support organizations. The views expressed here are entirely his own and not to be attributed to any associated organization or LifeNews.com. This article was originally printed in Public Discourse and is reprinted with permission.
It is used as an excuse to murder babies and nothing more.
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We ought to find out what syndrome Sybelius suffers from and outlaw it. She shouldn’t be allowed to run around loose without a heafty harness and maybe leg irons. Fur Shur she should be forcibly spayed.
Down Syndrome babies have a right to life, just like anyone else.
Thank God my mother didn’t think I was too much of an inconvenience!
do you mean splayed?
The Death Queen hasn’t a decent bone in her body.
The author is being far too kind. OF COURSE their goal is the abortion of children with Down's.
The Death Queen hasn’t a decent bone in her body.
Barry’s afraid he’d get out-debated by Trig Palin.
We simply need to make sure she doesn't reproduce. Her genome is obviously quite faulty.
Abortionists and their running dog lackeys really should never be thought of as HUMANS. NEVER. They are severely damaged. Sterilize them. Lock them up. Feed them once a day. That's all they need. They can live on their fantasies.
Omamacare=abort those babies by the obama workers of the world. Abort those Christian Babies because of the obamacare’s test. Bet there will be a lot of false-positives,SURPRISE.
Their ambition is to murder. Remember how they whooped and hollered when they got to execute Paul Hill? You’d have thought they had a dozen babies to slaughter at the time.
Abortionists and their running dog lackeys really should never be thought of as HUMANS. NEVER. They are severely damaged. Sterilize them. Lock them up. Feed them once a day. That’s all they need. They can live on their fantasies.
***
You shouldn’t hate murderers. With hate, you are only one step away from murder.
i don’t hate them. They are actually NOT HUMAN.
They scared my daughter with a “possible down syndrome” diagnosis with her 5th child. Several ultrasounds later, it was determined that the babe was not downs. Pressing to find the reason for the “scare”, the reason that was given was that she had turned 35 years of age. Had she not opted to have the baby, downs or not, this lovely child would not be celebrating her 6th birthday next month.
Considering that he voted against the Illinois Born Alive Act, this doesn’t surprise me, but sickens me nevetheless.
I have to disagree with most of the comments, here, but I do so out of kindness to potential parents of a child with Down Syndrome.
To start with, having children isn’t easy. It is time consuming, expensive and very burdensome at the very least. Many people who have children can barely get by, and many fail in their efforts, resulting in uncounted tragedy.
Our culture and society has done its level best to make having children even harder than it is naturally. Laws and demands are placed on parents that have unquestionably lowered our national birthrate, because more and more parents cannot reach the bar at ever increasing heights.
Many have even given up on the hope of ever having children at all, as just beyond their modest lives. They fear bringing a child into this world that cannot be given what it needs, and may be left only a bitter life, full of deprivation and denial.
But into this mix is thrown a possibility. Many are the parents who will still try to have a child, if that child at least has a chance to lead a normal life. But these parents cannot abide any more burden given to them, and still succeed. They have just enough: just enough strength; just enough money; just enough spirit; and just enough of everything else they need to raise a child.
A normal child. But if anything really bad happens, something catastrophic, that adds so much more to the difficulty, they just cannot abide.
Out of every four human pregnancies, one typically ends in a miscarriage. Mostly because it is terribly hard to conceive and bear a *viable* child. Often miscarriage happens with a woman’s first child, solely because her body needs to do a “dry run”, before she can safely carry a child to term. Likewise, older parents also have a much harder time conceiving, and some may never be able to do so naturally, because their ovum and sperm are just not as good as they used to be.
And sometimes, for some reason, or just randomly, a fetus will have Down Syndrome. From that point, whether to carry that baby to term becomes a contest between the will of the parents, and the law of averages.
Yes, some Down Syndrome children, with a lot of help and love, are able to lead fairly normal lives. But the *average* Down Syndrome child will have an IQ of 50. Using the old description of mental capacity, this places them on the cusp between those called “imbeciles”, and those called “morons”.
A normal child has a timetable of 18 years before they are an adult, with the hope that they will be self-sufficient and go forth into the world to succeed or fail based on their hard work and intellect.
An “average” Down Syndrome child cannot do this. Instead, their parents will never see them live lives without supervision. By then, what if the government won’t pay for it? What if for the rest of their lives they will be caretakers, their time and money spent on care, not living lives with ease and pleasure, but endless work?
Some parents will take this chance. Most will not. They do not, and cannot see “life” at any cost worth living, or creating. If they cannot do what they can do to have a normal child, then they would rather not have any children.
They just do not have the strength, or the heart, to do that. And I cannot condemn them for this.
I see this issue a bit differently. Yes, the regulation stinks and we should oppose it. But more importantly, we should be working to convince mothers to reject genetic testing out of hand. Why? Because the information does little good.
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