This week, a drug company called Sequenom has made their prenatal blood test, MaterniT21, available in select markets. This is the test I made reference to in a post or two over the summer: it’s the test that can examine fetal DNA from a maternal blood sample. What this means is that it can provide the information that, until now, could only be gotten from amniocentesis or CVS, and these are tests that carry a risk of miscarriage.
Well, I say it can provide the information that an amnio or CVS provides. These are tests that examine fetal genetics for a wide range of things. MaterniT21 looks for one thing, and one thing only: Down syndrome.
Amber Cantrell and I have interviewed quite a few women as part of an extended research project. Those who’ve chosen not to have an amnio or a cvs have said this was because of the risk of miscarriage. A maternal blood test carries no risk of miscarriage, and it can be done quite a bit earlier in the pregnancy than an amniocentesis. Earlier in the pregnancy matters because 90% of people who discover through testing that their fetus has Down syndrome decide to terminate the pregnancy. If you can learn that your fetus has Down syndrome earlier in the pregnancy, abortion is safer and easier.
As you all know, I am a big advocate of reproductive rights, so this isn’t a post saying that folks shouldn’t have abortions. It’s a post saying that I’m interested in seeing how this new technology affects our conversations about parenthood and disability. We’re a culture that often lets technology–rather than thoughtful ethical conversations, for instance–take the lead. So where will this technology lead us? What will it mean for the decision-making processes of women who are pregnant? What will it mean for people, like my daughter, who have Down syndrome?
Cross-posted at Baxter Sez.
Comments 11
Brad — October 27, 2011
Great point Alison. Free choice, of course, implied you are given the right information to make an informed and independent choice....otherwise it is not a choice at all.
Another interesting point to consider is "why focus on DS?" To the average person, it would seem to imply that this must be the "worst" of all "birth defects" and hence that is why they developed the test before singular tests for other conditions.
The truth is that it was developed first because it is relatively common (1 in 691) and because it is easy to detect (an entire extra chromosome). The test was an easy target, scientifically speaking, and had economics in its favor, but the average person will assume the singular test implies the severity of the outcome.
Joey — November 4, 2011
"MaterniT21 looks for one thing, and one thing only: Down syndrome"
Little misinformed - the test detects T13 and T18 and will let the doctor know if these aneuploids are detected. The test is currently undergoing clinicals to be able to 'market' the ability to say this - the information will published seperately in a different article. T13 and T18 are much less common therefore the clinical numbers were and are harder to obtain. Further - the future clinical protocol as established by the FDA for PMA will include T21, T13 and T18 as well as 'high risk and low risk' lot of misinformation out there - regardless the outcome will enable mothers to not lose healthy babies trying to figure out if they have a baby that may need more future care and the preperation that may need to be taken if necessary for that particular baby and the rest of his / her life.
joey — November 6, 2011
further - when applying the percentage of miscarriages in the "succes" rate for amnio - Maternit21 is safer and more accurate. Miscarriages account for 1-2% of all amnio's, that would put the amnio below the success rate of Maternit21. Interesting as the amnio claims the rate of their success with a disclaimer of "carries a small risk of miscarriage" Ummmm, excuse me but shouldn't creating a miscarriage be included in the "success' rate? Why is the miscarriage ratio not included in the literature of the success rate of the amnio. I would call a miscarriage a definite "misdiagnoses"
Nori Coleman — November 14, 2011
MaterniT21 is another sick way to intimidate women to their so called choice of making their womb a hostile place for their unborn child to dwell. I am a mother of eight and my youngest has DS.I used to think this was anawful thing as well as I used to think choice was a good thing but I had both backwards.Women need support and love during pregnancy not fear. We are told wecanbeanything we want to be these days: rocket scientists, lawyers, judges but we have to be sure we can handle being a mother of a so- called disabled-child the very thing our nuturing nature was meant to do. Materni T21 , abortion and all of the other prenatal tests and so called choicey things can go suck an egg to putit nicely leave women alone and let us be women and mothers what we were meant to be who bring about the most valuable thing in the world,life. It's not about survival of the fittest it's not abouta genetic test, it's about love and we are all capable of tthat regadless of our flaws.
Gerrie — November 15, 2011
One consequence of a more accurate test for Down ’s syndrome if it leads to more widespread testing or women for this condition is that more women will face the decision of abortion or not. Now women first face the question, “Would I abort my pregnancy if I knew I had Down’s syndrome, and if so am I willing to undergo a test that could cause miscarriage to get that information.”With the Sequenom™ MaterniT21™ test women will be able to get much more definitive information without a test that puts their fetus at risk from the test itself. This may lead to more women choosing to be tested.Putting aside the whole “pro-life vs. pro-choice” debate, the opportunity for earlier diagnosis will make technically easier and less physically traumatic abortions possible in women who have a Down’s Syndrome pregnancy.
Nori Coleman — November 15, 2011
Less physically tramatic for who the mother or the child with DS. There should never be the putting aside the issue of abortion because it will always be just as mentally traumatic in the first tri. or the second and third. No one should have to coose to terminate and that is what these tests set us women up to do. Maybe you need to watch the silent scream by by ex- abortionist Bernard Nathanson or look at some pics of what abortion really looks like.I am not for shoving this in peoples faces but if you are going to defend abortion at least be willing to look at what it really is just like the victims of the holocaust in mass graves instead it is just dumpsters and fetuses of babies in early life stages who may have been diagnosed with DS. Nine out of ten babies diagnosed with DS already end up in the dumpster I guess the test will getthe onesslipping through the cracks. Let's be a bit more civilized and compassionate and give our children a chance of life vs. choice of being pulled out of their mothers womb with surgical instruments 1st, 2nd or 3rd trimester. Let's not kid ourselves or let Sequenom kiduseither. Do they care about women, babies,or kids withDS or their corporatepocketbooks anyway. Maybe they'll even get a cut for each refferal to the abortion mill.
Joey — November 16, 2011
Nori - although I'm sure many here appreciate your very strong position in the matter of abortion - it appears as though a clear understanding of the test and its true benefits are going to be and will always be blind to your eye. Perhaps you should look at some of the articles and blogs regarding Maternit21 as opposed to amnio through the eyes of Brazil. They understand the true benefit of preparing a family for a downs baby and having the help they may need upon the babies arrival.
Nori Coleman — November 16, 2011
I am not against the test if it is to be presented with the positive attatchment to children with DS. As of this time a positive amnio or higher level ultrasound that detects DS is coupled with counceling from genetics on abortion and the wording that is used is that , " the baby may not be compatible with life". I don't know what the difference is betweenBrazil or the U.S. or any other country for that matter have to do with presenting a diagnosed pregnancy of a disabled child in a positive light . Being blind is a metaphor to being in the dark and I don't know if you have ever been to an OB/ gyn appointment or have been put through alpha fetal protien testing awaiting for someone to come back to you with test results and possibly tell you that your child is not worthy( or as they say compatible with ife, but I have. I have been put in this situation from those so called helpful less invasive tests and had to defend the right of my unborn child to live. I also understand the dangers of amnio and have been in the position of having to decline such a dangerous test. Like I said I am not against a test if it is presented along with a brochure of positive info. on having a child with DS but our society has already shown that these tests are used to weed out people with disabilities. Maybe you should read, about the dignity of life of every person born. What will the next non-invasive prenatal test be for IQ, deafness, or maybe the blindness you speak of then we can began to erradicate of of those babies,too. As far as preparing for a baby with DS or any other baby for that matter, it all falls into place if love is involved. It's as easy as painting the nursery pink or blue, it doesn't take rocket science and we should stop insulting people's capabilities of being able to handle such situations. Maybe that is were the blindness comes in people helping and supporting people and we wouldn't have so called choice to eliminate unwanted beautiful children with DS. I also invite you to visit my blog and see my wonderful son who has T21 no test could of prepared me for the love and wonder he gives to us everyday. The test you are speaking of does an injustice to people with T21 because it could never prepare anyone for what a child with Ds has to offer. I think you are missing the point . You don't know the pressure we women are put under to abort our childen these days even after a test that can produce false positives. It has been termed the culture of death for a reason.
Joey — November 16, 2011
I hear your passion and I bet you are one great mom. We obviously may not see eye to eye concerning the Maternit21 test, but that is our "choice". BTW - Brazil, abortion is illegal.
Nori Coleman — November 16, 2011
Well,I am glad to know this about Brazil that they have "chosen" the dignity of life, I hope they continue to be a role model for other countries such as the US and give an unborn baby the "choice" to have a voice especially those that may have some type of disability. I am glad that at least in Brazil the MaterniT21 test will not be used in the persuasion of women to rid themselves of their child with DS but for those of us hear in the US and other nations who have "chosen" to allow death in the womb we are not so fortunate. These type of tests have been and continue to be tools to detect and weed out society's so called" not compatible with life" I am very compassionate not so much passionate for my fellow men, women and children I guess I wish everyone born and unborn be protected. Most of the time the intent of a product isn't itself meant for bad but it is unfortunate that it ends up in the wrong hands and ends up being used for bad. If abortion wasn't an option this test would be a great asset but when making a choiceI like to use the scientific method and consider all of the data present. This test is already in the process of being used for the purpose of eugenics in countries who have chosen to legalize the killing of unborn babies by their own "choice".
ff — November 18, 2011
Nori,
First, and most importantly, kudos to you on being a mom that has everything it takes to be a good parent. Unfortunately, there are far too many women out there that do not have the mental fortitude, or many of the other things necessary, to bring a child into the world. I give you all the credit in the world for raising your family in a loving environment, however, to say that bringing a child with DS (or any other child) into the world "falls into place if love is involved" is simply ludicrous. The introduction of the MaterniT21 test, along with the introduction of future genetic tests, will provide valuable information to prospective parents. This test has nothing to do with eugenics, or suggestions in any way, to terminate "imperfect" fetus'. The world would be a better place if more parents like you existed, however, the reality is that too many people lack many of the components necessary to become a good parent to any child. Ultimately, if you cannot trust a woman with a choice...how can you trust her with a child?