Supreme Court Unexpectedly Upholds Regulatory Elimination of Down Syndrome

I asked Mark Leach, a lawyer whose daughter has Down syndrome, to offer a reflection on how the Supreme Court’s recent ruling regarding the Patient Protection and Affordable Care Act would impact the lives of individuals:

A common reaction to the recent Supreme Court decision upholding the Patient Protection and Affordable Care Act (PPACA) was that it was “unexpected.” The Chief Justice reportedly sided with the dissenters to overturn the entire law, only to then switch and author the majority opinion. But buried within the PPACA regulations is something that for many also should be unexpected. If it’s not addressed, it does not matter what else PPACA does for individuals with Down syndrome and their families.

Pursuant to PPACA’s provision for no-cost preventive care services for women, insurance policies will be required to provide no-cost prenatal genetic testing starting August 1, 2012. A preventive treatment exists in response to many non-genetic prenatal tests. For instance, when my wife was expecting our daughter, she was prenatally tested for gestational diabetes and was able to monitor her condition so that it did not negatively impact the pregnancy. This is not the case, however, for prenatal testing for Down syndrome, the condition our daughter has had since at or near her conception.

There is no treatment pre- or post-natally for the extra 21st-chromosomal material that causes Down syndrome. Currently, an estimated 400,000 Americans have Down syndrome. Characterizing prenatal testing for Down syndrome as “preventive care” expresses a policy that fetuses diagnosed with Down syndrome should be prevented from being born. Indeed, a member of the Court’s majority, Justice Ginsberg, previously stated in an interview that one purpose of abortion is to reduce “populations that we don’t want to have too many of.” Population reduction is exactly what happens where there is a public policy for prenatal genetic testing.

Public policies for prenatal testing result in more pregnancies being diagnosed and aborted. Graphs accessible at the European Surveillance of Congenital Anomalies database demonstrate this impact, with the rate of Down syndrome pregnancies increasing, but the number of live births decreasing in those countries with a public prenatal testing program. This impact is not solely a European experience.

California has had a state prenatal testing program since the 1980’s. Program researchers have stated that the program’s purpose was to reduce the number of babies born with Down syndrome. Though almost 1,400 births with Down syndrome would otherwise have been expected during the study’s time period, only just over 700 babies were actually born, resulting in an almost halving of the next generation of children with Down syndrome. For every baby born with Down syndrome, another was aborted. The goal of the program is being achieved: babies with Down syndrome are being prevented from being born through prenatal diagnosis and abortion.

In and of itself, prenatal testing is value neutral and simply provides information—indeed, the diagnosis of Down syndrome is typically accompanied by shock because it, too, is unexpected. Further, reducing the cost of prenatal testing through public policies is not necessarily problematic. But if prenatal testing is to be offered at no-cost, why is there not a corresponding mandate to provide all of the information necessary for an expectant mother to make an informed decision?

Adequate training of health professionals on prenatal testing and what life is like for individuals with Down syndrome and their families; accurate information about the prenatal tests and Down syndrome for patients; access to genetic counselors; and referral to support organizations are all called for by professional guidelines and federal law. Yet the PPACA regulation does not require providing this information. As a result, only part of the information, the prenatal diagnosis, is required to be offered, but not the other resources necessary for mothers to make an informed decision.

To say that a genetic condition should be prevented, with the only means of that prevention being abortion, is morally objectionable. It hearkens back to the eugenics atrocities of the last century. To further have that goal stated by a federal regulation is grossly objectionable and, one would hope, unexpected by our elected officials, as it very likely was when the regulations were passed. But since then, the Senate sponsor of the amendment under which the regulations were issued, Sen. Mikulski (D-MD), has been called out in local print media, and Rep. Cathy McMorris-Rodgers (R-WA), a mother to a son with Down syndrome and leader of the Congressional Down Syndrome Caucus, has been briefed on the regulation targeting Down syndrome for prevention. But nothing has been done.

The remaining merits of PPACA can and should be addressed as it impacts families with Down syndrome. Discussing the benefits or negatives of PPACA to individuals with Down syndrome, however, will not matter if PPACA’s intention of preventing these fellow members of our society from being born is allowed to go into effect this August 1, 2012. The Supreme Court had a chance to void these regulations by striking down the law. I now would welcome the unexpected action to rescind the PPACA regulation’s requirement for no-cost prenatal genetic testing for conditions that cannot be treated by Rep. McMorris-Rodgers, Sen. Mikulski, or any other elected official who wishes to keep our government from saying that those with conditions like my daughter’s should be prevented from being born.

Mark W. Leach is an attorney from Louisville, Kentucky, and a Master of Arts in Bioethics candidate (2012). Today happens to be his daughter’s birthday, a gift that has received an unexpected outpouring of support since the day she was born.

About Amy Julia Becker

Amy Julia Becker writes and speaks about family, faith, disability, and culture. A graduate of Princeton University and Princeton Theological Seminary, she is the author of Penelope Ayers: A Memoir, A Good and Perfect Gift (Bethany House), and Why I Am Both Spiritual and Religious (Patheos Press).

Comments

  1. Hallie Levine Sklar says:

    I am stunned that you can come to the conclusion that offering no cost prenatal genetic testing to expecting mothers amounts to eugenics. There are many, many benefits to a prenatal diagnosis of genetic conditions such as Down Syndrome, especially if a woman chooses to continue her pregnancy. The issue should not be that women are offered no cost prenatal genetic testing but that they are provided with up to date information if the fetus does indeed have Down Syndrome or another condition. You also state, “If it’s not addressed, it does not matter what else PPACA does for individuals with Down syndrome and their families.” I completely disagree with this statement. As a mother of a beautiful little girl with Down Syndrome, it matters a huge amount to me that she will never be discriminated again by health care insurers and denied health care coverage simply because of her extra chromosome.

    • Thank you. I don’t like this article. It’s not very nice.

      • Nice?! Is that how we judge truth?

        “In the absence of faith, we govern by tenderness. And tenderness leads to the gas chamber,” Flannery O’Connor, who herself knew what it meant to suffer under crippling disability that led to early death.

    • Thank you Hallie!

    • As a mother of a child with Ds as well, I agree with the article. (and we can all disagree, it is ok) If more and more babies with Ds are being aborted there will be less and less available for our children. Ds research has come along a long way but can still be better, but nobody wants to invest in finding treatment if soon children like ours could be extinct.And there will be less specialist available for our children. As it is, the abortion rate is high, and now with the new non invasive prenatal test will make diagnosing Ds easier without the risk of a miscarriage (which is a factor that prevents some from getting amnios) it will make abortion more likely.

      • i understand where you are coming from Erika, but say in one hundred years and they are extinct (i dont think that will happen as long as there are willing mothers) then the research will be unnecessary. if a woman is willing to bring home a baby with DS and have treatment, i doubt there being little treatment will deter those mothers. really, think of the mothers that do not want children with DS. women who cant handle children with DS. they should have that choice.

        • ….in addition, why assume the worst? In this country we prepare for everything else…why not for a baby who may have additional needs?

        • i really feel extinct is not appropriate for talking about people they are not animals they are just like us!!! and their are plenty of parents who would be willing to adopt a child with down syndrome so. why abort any baby for that matter!!! abortion is wrong no matter what!!! if you are not willing to take care of the child you concevied then you dont deserve to enjoy the blessing that any child brings!!! disability or not!!!

        • Soooo… infanticide? I mean, what if one slips through the screening? It’s only like 90% reliable, after all. Did you know that people get false positives on these tests, too? How many false negatives you think? So, if a baby slips through, and they don’t extinguish (the verb form of extinct) twenty minutes before it comes out, why not twenty minutes after?

          Or better, Kelsey, why not two months or years later? After all, the parent(s) might discover her/their limitations once they’ve gotten into the game. It’s not their fault the little… what shall we call it, if it is not a human child?… beast?… monster?… what can we call a little born baby to justify its murder, since “fetus” seems inappropriate post-partum. Never mind that “fetus” is just Latin for “child.”

          God save us from living in a society where the security of our life is dependent on someone else feeling like they can “handle” us.

      • “…nobody wants to invest in finding treatment if soon children like ours could be extinct.”

        Well said. More to the point, nobody wants to invest in finding treatment if soon children like yours can be *made* extinct.

        Abortion is soooo much cheaper than medical research. Greatest good for the greatest number is our nation’s Enlightenment ethic. More good and fewer people is fine. And if we can’t have more good, we can always have fewer people who aren’t good. Right?!

        Satanic, but it’s the way our leadership thinks.

      • JamieHaman says:

        Why would you believe these children could become extinct? Plenty of parents would, and do get the info that their child has D.S., and choose not to abort. They CHOOSE to have this child. And this chromasomal abnormality is going to continue to occur, as long as there are people on the planet. I agree with your statement that there will be less specialists available, and that will lead to more travel cost assosciated with treatment.
        However, I don’t feel that women, and families should be forced to have to deal with this either. It is a choice, at present.

    • “Especially if a woman chooses to continue her pregnancy…”

      Let’s be careful of euphemisms. What you mean, if we are going to be perfectly frank, is “if a woman chooses not to murder her child because it is not perfect and she (and/or her husband?) don’t believe it will fulfill them, conform to their dreams, or be easy to cope with.” Plato has it that the start of wisdom is to call a thing its proper name.

      The problem isn’t just up-to-date information. What if the latest-and-greatest info (not that it is ever overturned by the next latest-and-greatest) is that children with this disorder or that turn out to be miserable wretches?

      We might have managed to protect people from discrimination with a less ridiculous “law.”

      As the mother of a beautiful child with Down Syndrome, you might ask yourself where all the other Down Syndrome children have gone to? Why there are so many fewer of them around now than a couple decades ago? Why their live birth rate has fallen off by as much as 90% in the US and other Western countries. Google it. The National Health Service in the UK is perfectly clear: early detection.

      Let’s be clear: this law is not about tender loving mercy for anyone. It is about the greatest good for the greatest number – the utilitarian definition of ethics. It sounds nice, but it leads to fixing problems by killing them. Always has. Always will.

    • Brian Bonneau says:

      Did you actually read the article? It pretty much says exactly what you’re complaining it doesn’t say and points out that because parents are not “provided with up to date information” free testing is problematical, not that free testing itself is.

  2. Mother of 3 says:

    I would ask how many of these aborted babies actually are confirmed having Downs after they have been aborted???? I was tested when I was pregnant with my 3rd, did 4 ultra sounds, met with a genetisis and was told I had a 83% chance that my baby would have Downs… I was then asked – shall we set up an abortion date? I chose not to abort this baby as I am pro-life. In 2008 my perfectly healthy baby boy was born with NO, I reapeat NO signs of Downs… I would have killed a healthy “normal” child. How many mothers are given the same news I had and chose to abort a healthy child?

    • My beautiful niece would be dead, too, if my sister were not pro=life. She is lovely, smart 13 year old. We call her our puff-o-love!

    • dolphinkist says:

      First off, it’s terrible that they assumed (almost pushed) abortion. They should say nothing and have you come to them about abortion. My friend didn’t discover her baby had Ds until he was born…even then a social worker came to the father and asked if he wanted her to start placement and adoption proceedings.
      This is what’s so terribly wrong with the system right now. They assume abortion and give it as the only option so that you have to ask about others. They treat the news like it’s the most horrible information they can give you.
      Second, while all abortion does bother me, it bothers me more that a person (or two) who want a baby will decide to kill it just because they’re not going to get the perfect child (there are no guarantees, no matter what the tests say).
      Third, I am both happy and sad for you that your child was not born with Ds! (Of course your child is wonderful and you wouldn’t trade, but I’m wondering if you were relieved or a bit disappointed?…I’ve heard of people being disappointed and I can understand that.)

    • I agree. this is government once again lying and deceiving to control the population.

  3. hobiesoccer says:

    I am a special education teacher. I value ALL life!!! Even so I had an amnio when it looked possible that my third son might have Down Syndrome. I had the test done because I wanted to be prepared for any medical needs, but more likely, because I would need to prepare family members so that they would know that the birth of a child ANY child is a gift, and Down Syndrome is NOT a tradgedy. As an educator, I might consider name choices carefully, I have had students who although somewhat literate, were still struggling in their teens to lear to spell their own name. I might have selected “Mia” instead of “Gillian” or “Ian” instead of “Jeremiah.” I would never have terminated my pregnancy, but planning for the arrival might have been different. Let’s not assume the worst about everyone and every possibility.

  4. Mom to No One Important says:

    1. The title of this article is sensationalist and ridiculous. The ACA says NOTHING about “eliminating Down syndrome.” So to say that the Supreme Court therefore agreed with the notion is ridiculous. It caught my attention for the sole purpose of figuring out how the truth had been bent. For every one of me there will be one hundred others who see it shared on a Facebook newsfeed but don’t bother to click it, or won’t read down to the SIXTH paragraph where author finally shares that it is not prenatal testing but lack of appropriate information that is the real issue. SHAMEFUL.

    2. The statement that the ACA doesn’t require accurate information be given (and is therefore an “anti-Down syndrome” piece of legislation is also misleading. By the author’s own research, there is already federal law (which the author linked to in the article) which stated that accurate information be given. If it is already the law, why does there need to be ANOTHER law to accomplish the same task. I do understand that the first law is not being followed, and I am disgusted by that fact. Adding another essentially unenforceable law to the books wouldn’t make the situation any better.

    3. I agree with the previous poster, that prenatal testing can do a world of good for families who will eventually receive a diagnosis of Down syndrome. As someone who didn’t receive one, but has a child with DS now, I can tell you that the excruciating feeling of grief at a time in your life which should be the most joyous is something you never really get over. Likewise, having my child immediately taken from my womb and to the NICU for testing that could have been done while he was still in my womb had I known he needed it before he was born (to check for heart and intestinal defects). Had I opted for prenatal testing, the grief, and the diagnostic testing, could have been long past when my beautiful son finally entered the world.

    4. The ACA does not FORCE anyone to have prenatal testing, or an abortion in the case of DS. The ACA OFFERS testing free of charge. So did my private insurance plan, and I did not have it done. If you get a positive diagnosis, the ACA does not FORCE nor ENCOURAGE nor PAY FOR an abortion if the mother chooses to have one. Nor does it have any jurisdiction to force a private insurer to provide funding for one.

    5. I see tremendous irony in an article that basically calls out the medical community for giving false/biased information being based predominantly on false/biased information.

  5. Agree with previous post. This assessment is inaccurate and offensive. My daughter’s hydronephrosis (kidney situation) was dx’d prenatally and that allowed us to follow it early. Even though her multiple health concerns including serious ventral-septal defect and cataracts were not dx’d until after birth, termination never crossed our minds. And now with a recent leukemia diagnosis at age nine, (children with Down syndrome are more likely to have leukemia) it is more concerning that many lawmakers want to allow businesses to drop insurance for those with pre existing conditions–this includes my daughter’s cancer. We need to look at how to ensure that health needs of our most vulnerable citizens can continue to be met and maintained after they are already on the planet rather than the alternatives being proposed.

  6. I’m very shocked by this author’s position on prenatal testing. To say that it would result in an increase in aborted babies is pretty much another way of saying that you have given up faith in humanity. How many mothers have been given the news that their baby will be born with Down Syndrome and continue with the pregnancy? I’m sure they were grateful to have been able to prepare for the challenges lying ahead. Same with mothers of babies who are born with other disabilities. The only thing I agree with in this article is the following:
    “Adequate training of health professionals on prenatal testing and what life is like for individuals with Down syndrome and their families; accurate information about the prenatal tests and Down syndrome for patients; access to genetic counselors; and referral to support organizations are all called for by professional guidelines and federal law. Yet the PPACA regulation does not require providing this information. As a result, only part of the information, the prenatal diagnosis, is required to be offered, but not the other resources necessary for mothers to make an informed decision.”
    These are needs that not only parents expecting a baby with Down Syndrome should have. What if the author had written, “Adequate training…on what life is like with a baby; accurate information about prenatal and postnatal care for mother and baby; access to lactation counselors; referral to support organizations, all called for by professional guidelines and federal law…” What if these standards were applied to all at-risk pregnancies — pregnant teens, pregnant mothers living at or below the poverty line, pregnant mothers who are not able to afford quality healthcare or daycare once the baby’s born? Surely, the standards the author would like to see applied to care for a mother who is pregnant with a child with Down Syndrome would, if extended to all expectant mothers, do more to decrease abortions.
    Not to diminish the author’s life as the parent of a child with Down Syndrome — it surely has its unique challenges and blessings — but IMO his POV is woefully myopic.

    • actually there is a very HIGH abortion rate for pregnancies with babies with Ds as it is. And what is “preventative care” then? You cant prevent it unless you abort.
      One of the first things I was told when there was a “marker” of my baby having Ds was, I could have an amnio to verify and abort. Instead of being offered resources and up to date information on what it is to have a child with Ds.

      And I refused the amnio, and I do indeed have a child with Ds. He is the love of my life.

  7. sabinfigaro0714 says:

    90% of Down Syndrome babies (or reported to be so) are aborted. 90%!!!!!!! Something is wrong here! Very wrong!

    • dolphinkist says:

      That stat is horrible. However, it’s 90% of people who were tested for Ds. This is with the older testing methods, too (like amnio). So, the majority of those people were already planning to abort if something was “wrong.” The rest of them were probably “taught” to be worried by their doctor and took the doctor’s advice (which often leans toward abortion). Many people never had the test because it “didn’t matter” to them, so why risk the baby with a “test that I won’t do anything about?” So, the stats aren’t quite acurate when it comes to the whole.
      It will be interesting (a bit frightening, but I’m trying to be hopeful that the people who said it “didn’t matter” will still say that when they know for sure) what the stats will become with the new “non-invasive” blood test.

  8. dolphinkist says:

    The testing is provided at no cost, it isn’t required (yet), correct?

    While I wholeheartedly believe that we must be vigilant so prenatal testing is never required, I don’t have a problem with it being covered at no cost. There are several prenatal tests and deciding this one can be covered but another one can’t is difficult…where do we draw the line? Just because there’s no treatment for Ds doesn’t mean there isn’t treatment for some of the other issues different testing can discover. Also, giving parents a few more months to learn and educate themselves about their Ds child does have a purpose.
    That said, I agree that we must make sure people are better educated, especially doctors, and that a dx of Ds is NOT a death sentence. New laws have been put in place for this increase in current information, so that’s definitely a step in the right direction. In fact, if these laws are used in conjunction, many families may get a better start (I know–I’m hopeful, but Ds children are so amazing, I can’t believe anyone can truly learn about them and still choose to abort and I also dream of a world where those who can’t see the wonder of Ds will choose adoption over abortion).

    • wkdkween says:

      Perhaps you have only seen the good side of DS, I worked in a developmental center, where there were many DS who were very hard to work with. It’s not all rosy and loving as many would have you think. DS can be self abusive, aggressive, very low functioning. They are unable to perform most self care. Both sides need to be shown.

  9. I have read different statistics on how many babies diagnosed with Down syndrome are aborted, most agree around 90%. It makes me so sad. We refused any testing for Down syndrome. We would never have aborted the baby, with the rate of false positive results we could have been apprehensive the rest of the pregnancy for nothing, and we had the rest of the baby’s life to deal with any surprise issues he or she could have had. I can’t imagine my doctor forcing me to undergo testing that I in no way wanted. That would have been a benefit to me how?

  10. Better With Downs says:

    Author, be careful. Your hate of the healthcare act is showing. This could have been a good article but your passion has blinded you to the inconsistencies and misinformation in your own article.
    Hate the healthcare bill or love it, I don’t care, but information should be accurate.
    Passion is good, but it comes across as political passion, not passion for your daughter (it actually seems like you “use” her and I’m assuming that was not your intent).

  11. Wow. The Court upholds “regulatory elimination of down syndrome”??? You obviously have not read the Court decision. Patients are OFFERED genetic screening–not required to have it–and it results in information given to the patient–not mandatory abortion by any stretch of the imagination. Just choose not to have the test if you’re not interested, but don’t try to stop the rest of us from being given all of the information there is.

  12. Statistics don’t lie. And statistics say that the author is correct. Please look at the links to published, peer-reviewed studies. Regardless of the emotional feelings, the statistics from Europe and California show what happens after mandatory pre-natal testing coverage for DS was introduced. The statistics show that while pregnancies w/ Down Syndrome increased, the number of live births decreased. The difference- a massive increase in abortions of babies with DS.

    Couple that grim fact with the Obama Administration’s deliberate defunding of the Kennedy-Brownback bill (giving current & balanced information, including the joy/positive impacts on families of having a child with Down Syndrome). Yes, it was passed, but it has received NO funding.

    There are some positive things in the PPACA. This is not one of them.

  13. Still trying to sort through the author’s point here – so, you interpret the provision allowing access to prenatal diagnosis as the PPACA’s “intention” is to prevent those with DS from being born? Nobody is forcing prenatal testing or abortion on anyone – the law allows them to have testing if they choose (testing that might identify heart defects or other problems, and help prepare parents of a DS baby for a healthy birth). Mr. Leach also is concerned that there is no mandate to provide up to date information about DS. I completely agree that there is a real need to better educate physicians (and the general public) about DS, including positives, but isn’t that addressed in the existing Kennedy-Brownback Law (which was fully supported by NDSS and NDSC http://www.downsyndromeconnection.com/kennedybrownback.htm)? Perhaps his efforts should be directed towards seeing that Kennedy-Brownback is effectively implemented, rather than attributing nefarious intentions to a PPACA- a law that allows my daughter with DS, and all those with pre-existing conditions, access to care.

    • Bingo – more info for the inevitability of cheap genetic testing is a must, but let us not muddy the waters that this law offers us many improvements in quality of life for people with DS

      • And the improvements for those who are permitted to live muddies the waters that this law gives free testing and extermination coverage for anyone who might not want to let them live. I can’t think of a better way to encourage something than to pay for it.

    • Very well put! Thank you!

  14. Good and bad points in the article. My prenatal screens came back normal. I had ultrasounds 2x’s a week as I was high risk with my BP and our daugter has DS. 10 months on Monday my other kids came back abnormal and they have no DS.
    Keep them imformed don’t push abortion.

  15. According to American academy of pediatrics, and the over 25 page outline that guides pediatricians to care for kids with Downs….prenatal care and discussion to make an informed decision is part of the gold standard of care. I would doubt that any geneticist or MD would not help a mother make an informed decision here.
    And let’s not forget, it’s not just about the “perfect” baby, but what each couple can afford to deal with emotionally, financially, etc. kids with downs can be low or high functioning and a multitude of health problems can come with that! Downs kids are special children, they are loving and sweet but there are a bad health issues that they have to deal with their entire life. It’s up to each couple to decide…informed decision.

    • D – You are correct about what is considered “the gold standard of care.” As a parent and person involved in the Ds community, I have heard from many parents that were not offered balanced information. And these were from births within the past five years. In some cases, parents were provided the diagnosis and then asked when they would like to schedule a termination. I do believe that many of the doctors involved in these scenarios were misinformed, or were familiar with a time when there weren’t many resources and babies with Down syndrome were sent to institutions. But I do want to share that there are still doctors today that do not provide both positive and negatives. They stop short after telling parents what their children will not be able to do.
      In order for a doctor to provide the gold standard of care they must be aware of available resources that they can provide to the parents – thus ensuring an informed decision.
      I have been very fortunate that my child has not had major health issues. In fact, I know friends with “typical” children that have had many more health issues to deal with. Does my child have challenges that many other children do not have? Yes. But I was fortunate enough to have doctors that provided me with up-to-date and accurate info and guided me to local resources. And because of that, was able to decide what was right for my family, and make an informed decision. Thank you for sharing your post!

  16. The title may be sensational but the article is essentially true. The dispute should be about whether the current stats reflect a reduction of DS due to genetic testing. It would be difficult to dispute this. It is also hard to quantify how beneficial early detection is to the health care providers and parents. The author also demonstrated the bias in providing testing but no counseling for informed decision making for those who may want to abort. There is an agenda here. Some people believe there is an intrinsic value to life, others define the quality of life for others and then manipulate people under the guise of helping them.

  17. Mike Sullivan says:

    Presumably the legalislation could state that screening is only directed towards life affirming care for the unborn child, otherwise it points towards eugenic birth prevention. It is after all meant to be about antenatal health care.

  18. watch Sequenom stock on that (nasdaq: SQNM)

  19. This article is ridiculous!…I will leave it at that….

  20. Caroline Mavridis says:

    This is crazy, if people realized how wonderful it is to raise a beautiful child with Down syndrome instead of professionals scaring the crap out of parents then society would look at people with a disability with respect and not shun them. Only 10 percent of the types of disabilities out there are genetic so they can only test for the 10 percent. Autism, Cerebral palsy just to name two are not genetic but can still happen. This prenatal testing is giving families a false hope of having a child without a disability. A person can become disabled at any time in their lives. What are the professionals going to do then. Kill them off too just because they are different. I love my sons and would not trade my life for anything. I think raising my sons was easier than raising a child without a disability when I watch my brothers and sisters with their children. The only thing I really had to deal with was the ignorance of others who believed my sons were less valued and could not learn and did not understand my sons. This whole genectic testing is just another money grab for companies

  21. Jane's Mom says:

    The real problem is that the federal government has invested at least $25 million into prenatal testing and has never funded the Kennedy-Brownback legislation to give patients accurate, up-to-date, and balanced information about Down syndrome or any other prenatally diagnosed condition. Consequently, the funding has fallen woefully short and the burden has been placed on a precious few foundations, organizations, and individuals. In reality, funding is the primary value of the KB legislation since there was no requirement in the bill that information be distributed. So, I think the call for action should be to match the funding for information.

  22. What will happen with women who decline to have a prenatal screening? For some number of women, it will be preferable to trust God rather than have tests, especially given the undoubted trend toward calling prenatal screenings “preventive” care, regardless of whether the conditions found are actually treatable or not. In the case of Down Syndrome, there is no treatment. The article is correct that the only form of “prevention” is abortion.
    There should not be a public policy, period, that it is preferable to reduce the number of people in the country with Down Syndrome. That is the heart of the matter. We can all have opinions on the question, but when government starts making policy about it, the potential for evil grows exponentially. Decisions about what life is worth bringing into the world are not the business of the government. This is one of the most important reasons that Obamacare is government overreach. Yes, it IS government overreach to make it policy that women “should” have prenatal screenings so that they can “preventively” abort babies with Down Syndrome. That is wrong. There is no way to make it right, and if we go down that path, it will not be long before “options” — e.g., prenatal screening — become opportunities for pressure on women to abort difficult-to-raise babies. The remedy is not to enforce your opinion on women and their choices, nor is it to enforce mine. The remedy is to cut government down to the right size, so that we stop foolishly and arrogantly talking about what government should be doing in the matter of what babies other people have.

  23. “It hearkens back to the eugenics atrocities of the last century.”

    No, prenatal screening for “birth defects” doesn’t hearken back to 20th century eugenics policies. It is one. The Nazis pioneered it, and it comes, part and parcel, with the rejection of Christian morals, which comes part and parcel with the rejection of Christian faith. The last time Westerners believed, in large numbers, that the murder of children – on whatever pretense – was acceptable was in pagan Rome.

    • Louis Mattioli says:

      I do reject the existence of your imaginary friend. As do many others. If you don’t want the genetic testing, don’t get it. Don’t restrict others’ access to it.

      • Who’s talking imaginary friends? If you think the case against eugenics rests on some arbitrary fiat from God, you are sadly mistaken, friend. It rests on the perfectly ordinary human desire to not have to be perfect and still be loved.

        It’s just that the Nazis, rejecting Christian “mercy” didn’t get that. Increasingly, we don’t, either.

        • I am not trying to be a wise ass here, but I don’t understand how prenatal screening is a ‘rejection of Christian morals.’ Did Jesus or Paul say not to do prenatal screening? Does it mention this anywhere in the christian bible? I have a difficult time understanding how a medical test has anything whatsoever to do with christian morals.

          • Hey Chad, thanks for the honest question. Actually, as a Catholic in particular, but for Christians in general, our morals aren’t really based on the Bible, but rather the other way around – though you wouldn’t know to hear some fundamentalists and evangelicals speak. The reason is that Christianity is actually about 300 years older than the Bible as we know it, and about 20-80 years older than the individual books that comprise the Bible.

            Prenatal screening isn’t necessarily a rejection of Christian morals. It can conceivably be done to help a family prepare itself to welcome into the world a child with particular or unusual needs. Sometimes these needs can be resolved even in utero through surgery or other means. In reality, though, the medical community encourages prenatal screening so that children with “birth defects” can be aborted. That is precisely what has been happening to about 90% of children diagnosed prenatally with Down Syndrome. This is the rejection of Christian morals.

            The world wants us not to judge, but then sets up life on the condition that a human must make some minimal criteria or else his or her right to live is forfeit. If you have Down Syndrome or (for example, in China or India) if you are a girl, or whatever the criteria is, people will be legally empowered to kill you before you can even open your eyes. To make things worse, they make as the justification such claims as “it is too young to feel pain” or “it cannot yet see or think.” That is, the child is small and weak, and therefore disposable.

            This is the antithesis of Christian morality, in which the poor, broken, and weak are to be given a pride of place and greater protection by society and its laws, where people are free to be less than somebody else’s concept of perfect, and yet be loved and cherished as a person.

          • Thanks, Ryan! That was a very thoughtful reply to my question, and I appreciate that. Yes, I can understand how you would feel about the test given the way it is being used, but do you think that means that health insurance should not pay for the prenatal testing at all? Like you’re saying the rejection of Christian morals (and these morals are shared by many who are not christian) is not really the testing itself but the way it is being applied. While I understand that forced abortions are common in more brutal countries, that is not the case in the United States right now (and may it never be), so any increase in abortions as a result of the testing would be because of the parent’s choice, regardless of the advice of medical workers and certainly regardless of the test itself, yes?

            Apologies if that last sentence was not very clear.

            Thanks again,chad

          • Certainly, Chad. An honest question deserves a thoughtful response.

            Really, the whole thing is a sort of nonstarter:

            (1) I do not believe prenatal testing for “birth defects” should be paid for by the taxpayer precisely because of how it will be used.

            (2) But even more than that, I do not believe the government should be funding abortion or coercing people to fund it, much less using accountancy gimmicks to cover up the fact.

            (3) Abortion should not be legal because it is a crime against humanity – regardless of who wants it or not. (Can you imagine the value of *your* life being determined by how much somebody else wants you around? That is the very opposite of the rule of law and the equality of citizens.)

            (4) Except on a local level, or perhaps a state level, the government should not be involved in health care. One size does not fit all.

            (5) Government has no business entering into the terms of a contract between to private parties when the terms are not themselves immoral or otherwise illegal, say, to mandate that one party provide certain coverage (and that the other party, directly or indirectly, pay for it).

            Really, paying to detect Down Syndrome, and then paying for the extermination of children believed (oftentimes incorrectly) to have it, is just one more atrocity bundled in with what is already pretty much a clusterf*ck of awefulness. But we’ll get around to exterminating other people, just you watch. The basic mindset, the willing self-deception, and the propaganda are all in place. Other groups of handicapped will follow; the unproductive old; the morbidly depressed. This isn’t doomsaying – it’s already begun in European countries and to a lesser extent, here.

            Utilitarianism, the official ethic of our nation, teaches the greatest good for the greatest number. If you have people suffering, you can raise them from their suffering. But if that doesn’t work, you just take them out of the equation.

      • Moreover, Mr. Mattioli, we’re not talking “restricting access.” We’re talking about public funding. That’s my tax dollars, too, and I have a right to argue about how I want them spent or not spent.

  24. Those prenatal tests already exist, and I have 4 children and was offered those genetic tests for everyone of my pregnancies, and refused them all. But that was my decision, this no law doesn’t take away peoples free will does it? When will we stop blaming the government for things that we as indivuduals should be accountable for? I think it is sad that so many people terminate pregnancies due to their child having a special need. I am a mom of a child with cerebral palsy, not something genetic, not something we had any control over, but had I been given control, I would not have changed a single thing. Having a special needs child opens your eyes in ways you wouldn’t believe, it changes you in a way that is awesome, but unfortunately you don’t know that until you have made the decision to accept Gods plan for you. And if you chose to not follow that plan, and terminate a pregnancy then who am I to judge? I am a sinner just like the rest of th people on the planet, its not my job to judge. Just like it is not my job to take away a persons free will, to do so would make YOU a sinner on a whole different level, because even God gives us free will. If genetic testing gives a family time to prepare and time to soak on what their new role will be, i say AWESOME! If genetic testing allows a child to be born with a whole medical team on hand seconds after birth to give baby a better quality of life, AWESOME! As a country we allow all the negative thoughts dominate our reasoning, without ever looking at something glass half full.

  25. Mark Leach completely misconstrues the words of Justice Ginsburg in this quote: “Indeed, a member of the Court’s majority, Justice Ginsberg, previously stated in an interview that one purpose of abortion is to reduce “populations that we don’t want to have too many of.” ” Go back and read the NYT article for the original quote. It’s pretty reprehensible when Christians, who are taught that bearing false witness is evil, do just that. And as others have pointed out, the conclusions that Leach draws from the provisions of the Affordable Care Act are stunningly wrong. Conservative evangelicals have concluded the law is the WORST THING EVER and will do anything, including outright lie about what’s in the law, to turn public opinion against it. Reprehensible.

  26. You forget who will write the regulation, Kathleens Sebelius, a long time supporter of partial birth abortion,

  27. Discrimination is already happening to Down Syndrome adults. I went to my local office to get more services for my son, who is now 22. He’s also autistic and has lost ground, and has expressed a desire to have friends. I found a place that provides a Day Care setting but it costs $30 a day. We spent almost 3 hours at the place, to learn he was on a waiting list pending funding. I asked how long? a month, 6 months, a year? And got no answer. I WAS told when asked how he qualified to stress that it was under the diagnosis of PDD-NOS or Childhood Disentagration Disorder


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