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.
If they feel empowered to do this, how far behind can mandatory termination be?
Unfortunately IIRC the test for this syndrome is only about 60% reliable and has many false positives.
They just do not have the strength, or the heart, to do that. And I cannot condemn them for this.
Admittedly, strength and heart are rare gifts.
That said, what is a 'normal' child -- one that has average IQ, or higher?
Defeat Obamacare.
Save the babies....I now have two Down Syndrome grandchildren, one naturally born to my son and daughter in law, the other one adopted from the Ukraine.
the blood test and ultrasound picks up a bunch of stuff, including things that can be treated to save the baby’s life.
(e.g. we lost a kid with a huge congenital diaphragmatic hernia because mom didn’t receive prenatal care until 32 weeks. If we had diagnosed it earlier we could have offered in utero surgery, but since it was picked up late, it meant the lungs didn’t develop enough to keep the kid alive even though we did surgery right away.
Another case, of course, is Senator Santorum’s baby Gabriel, with a kidney problem. They fixed it in utero but it got infected so she went into labor and lost the kid).
The bad news is that we docs have to offer it to families or risk being sued.
When my daughter was born was born they told us she had Downs Syndrome. Two weeks later they came back and said, oops, it’s just Cystic Hygroma. If they can’t accurately diagnose with the baby in their hands, I don’t know how anyone trusts the ultrasound diagnostics....
This is what the Nazis did. And things snowballed and a lot of people were exterminated due to governmental regulations. Rule by administrative fiat is our death.
Almost no child is born without something that could be called a ‘defect’, and this is where true, life or death morality enters the picture.
To illustrate this, here are two extreme examples. But there is a caution that the vast majority of ‘defects’ fit between the two in severity.
First is a cleft palate. It is regarded as one of the easiest ‘defects’ to surgically treat. The surgery is inexpensive, and the quality of life of a child with a surgically closed palate is tremendously better than a child forced to endure a cleft palate. And the sole long-term effect of the surgery is a small scar on the upper lip.
Yet there are many parents in Europe who will choose to abort a fetus over such a petty thing. Truly a failure of their morality, to kill their child over such a petty thing, and a shame upon a doctor who would countenance it.
As the opposite extreme are children who are born extremely prematurely, so much so that their internal organs have not developed, nor can continue to develop outside the womb. They are almost, to a fraction of a percent, condemned to death. But there is a “heroic” surgery, involving the transplant of all of their internal abdominal organs: heart, lungs, digestive tract, etc. And the child, even if it survives, will be severely crippled, retarded, and cost hundreds of thousands more to keep them alive for a short life.
This surgery is extremely expensive, now perhaps over $2m, and it almost never works. And it is a cruel irony.
None of the parents whose child needs this surgery can afford it, because the cause of such extremely premature birth is almost exclusively the lack of any prenatal care. Had the parents any guidance about how to tend a pregnancy, and followed it, their child would have likely fully developed.
The irony is that if the government just refused to pay $2m in a futile attempt to save the life of this infant, it could afford prenatal care for about 200 pregnant mothers. Ironic, because by *not* funding this surgery, the *need* for this surgery would be almost entirely precluded.
And this is the flip side of a moral failure. Because such parents beg and plead to save the life of their child, and people see this tragedy and their hearts are moved enough so that they petition the government to spend the money. Yet they do not know that to do so will create even more suffering.
As I said, these are two extremes. But each in their way illustrate the moral conundrum facing parents whose child they may or may not be able to support with their lives. A Down Syndrome child may be a godsend to parents with the strength and heart to raise them; but they may destroy parents who are not so gifted.
Disclaimer: Opinions posted on Free Republic are those of the individual posters and do not necessarily represent the opinion of Free Republic or its management. All materials posted herein are protected by copyright law and the exemption for fair use of copyrighted works.
