International Down Syndrome Coalition for Life. http://idscforlife.wordpress.com/
Described in 1866 by John Langdon Down, an English physician.
Jerome Lejeune, the French "Father of Fetology", identified the actual chromosomal variation.
Down Syndrome occurs in about 1 of every 733 live births.
Nearly 80% of these Down variations occur in women younger than 35, and can affect people of all ages, races and economic levels.
It isn't anything a mother does that causes her child to have Down Syndrome. [C.Bell, 1/07, GCH letter]
The way the risk of Down’s Syndrome is described makes a big difference in how it is perceived. A woman who is 35 has a .4% chance of having a baby with Down’s…a 99.6% chance of having a baby WITHOUT. A woman who is 40 has a .9% chance of having a baby with Down’s…a 99.1% chance of having a baby WITHOUT. A woman who is 45 has only a 2% chance of having a baby with Down’s…a 98% chance of having a baby WITHOUT. According to the late Dr. Hymie Gordon, past chairman of medical genetics at Mayo Clinic, the same low risk applies even to a woman who’s already had a baby with Down’s.
For example, a woman who is 30 years old has only a .1% chance of having a baby with Down’s. This means she has a 99.9% chance of having a baby WITHOUT Down’s.
The way the risk of Down’s Syndrome is described makes a big difference in how it is perceived.
A woman who is 35 has a .4% chance of having a baby with Down’s…a 99.6% chance of having a baby WITHOUT.
A woman who is 40 has a .9% chance of having a baby with Down’s…a 99.1% chance of having a baby WITHOUT.
A woman who is 45 has only a 2% chance of having a baby with Down’s…a 98% chance of having a baby WITHOUT.
According to the late Dr. Hymie Gordon, past chairman of medical genetics at Mayo Clinic, the same low risk applies even to a woman who’s already had a baby with Down’s.
In that case, there is a risk of NOT GREATER THAN 1% that she will have another baby with the syndrome. Considering how good the ‘odds’ are and the dangers which prenatal tests always pose to the preborn baby, why would ACOG be recommending this be done on every pregnant woman, regardless of her age? [N Valko RN, 10Jan07]
A Disturbing Step Towards Eugenics. The February 5th recommendation of the Society of Obstetricians and Gynecologists of Canada (SOGC) for all pregnant women to be offered non-invasive prenatal genetic screening for fetal aneuploidy, with a particular emphasis on Down’s syndrome, is a disturbing step towards eugenics in our society.
The National Post reported on January 6, 2007 that according to the executive vice president of the SOGC, this screening was being recommended “so that a greater number of women would have the option to terminate their pregnancies should fetal abnormalities be detected”.
COLF called upon all Canadians, especially obstetricians, gynecologists and expectant parents, to uphold the inherent worth and dignity of every human life and to protect the basic human rights of the disabled, including first and foremost their right to be born. Prenatal diagnosis demonstrates the positive advancements of science when it is employed to safeguard the life and integrity of the child and the mother, and does not place them at risk.
However, for most genetic conditions that can be identified in the womb, including fetal aneuploidy and particularly Down’s syndrome, there are no available cures or therapies that can be administered before the child is born.
The predominant purpose of prenatal genetic screening for fetal aneuploidy is thus to offer parents the option of aborting “defective” babies. "This places parents in the position of making life-death decisions based on their own preferences, fears, and guesses about the future quality of their own lives and their children’s. Yet human life is worth more than a series of rational calculations. So many Canadians with an illness or disability have made a positive contribution to our lives. Such people remind us that perfect health and a normal IQ are not required for happiness, friendship, and love of life. Rather than offering the parents of these children a way of eliminating their unborn, we should be providing them with more resources and support." [7Feb07, Press Release, COLF; Eckstein, Compassionate Healthcare Network (CHN), www.chninternational.com]
DOWN SYNDROME AND ABORTION
By Susan W. Enouen, PE
If current trends continue, it may eventually become "unacceptable" for parents to continue a pregnancy knowing that their baby has Down syndrome. Recent US studies have indicated that when Down syndrome is diagnosed prenatally, 84% to 91% of those babies will be killed by abortion.1,2,3,4 This trend is not isolated to the United States. In England, a 2004 study showed that 94% of babies who were diagnosed prenatally with Down syndrome were subsequently aborted.5 When all Down syndrome babies are considered – those diagnosed prenatally as well as those only diagnosed with DS after birth – studies show that 26% to 37% of these tiny lives will be ended by abortion.6
An estimated 70% of all pregnant women in the United States will choose to have prenatal screening tests.* Certain screening results in combination can predict DS with up to 90% sensitivity,7 but they are not definitive. Women shown to be at high risk may then choose to have a cytogenetic test, either amniocentesis or chorionic villus sampling (CVS), to check for the extra chromosome that would indicate DS. As first trimester screening tests become increasingly reliable, more women are choosing CVS because it can be done in the 9th to 12th weeks of pregnancy, thus allowing an earlier abortion. It has been shown that the younger the unborn baby, the greater the likelihood that a woman will have an abortion for DS.2 It should also be noted that in up to 1% of the pregnancies tested by amniocentesis, the baby is lost. C
VS is even more dangerous as over twice as many babies die and a few are born with handicaps.
When a woman finds out that her unborn baby has Down syndrome, what is she facing? In a 2004 study out of Harvard Medical School, researcher Brian Skotko found that women in this situation felt anxious and scared when learning of the diagnosis, and about half felt rushed or pressured into making a decision about continuing the pregnancy.8 Their feelings may have been partially influenced by the doctor's approach. Most health care providers tend to assume that if a woman consents to prenatal screening or diagnosis, she is willing to discuss abortion as an option. Also, many doctors in these cases may see advantages in ending the pregnancy as soon as possible to avoid the medical risk to the woman of a late abortion. Combine this predisposition with the perceived "burden" of raising a child with Down syndrome, and many women could convince themselves that abortion is their most prudent "choice."
To counteract this effect, it is also true that doctors presenting the prenatal diagnosis can positively influence the outcome if they provide balanced information about DS. The same Harvard study found that mothers who chose to continue their pregnancy after a prenatal diagnosis of Down syndrome did so for personal reasons such as conscience and religion, but also because they had gotten information about Down syndrome, either in printed materials or from talking to a parent of a child with DS. However, most of the mothers felt that their doctors did not explain DS adequately and in a balanced fashion. They suggested that doctors and genetic counselors should convey consistent, accurate and sensitive messages about life with a child with DS, and that doctors, nurses and hospitals should provide contacts with local DS support organizations.8
As helpful as many DS support organizations can be to parents of children with DS, some of the largest ones have abdicated any responsibility for reducing abortions of babies with birth defects. The March of Dimes, the National Down Syndrome Society, and the National Down Syndrome Congress all take a neutral stance on abortion, ostensibly because they don't want to judge or to tell anyone what to do. However, a neutral stance on abortion is not a neutral policy. It implies that the killing of these innocents is in the best interests of society, and can therefore be justified. Instead, these organizations need to take a stand in defense of all babies with Down syndrome, born and unborn. They could have an unparalleled influence on the current situation by putting a positive face on these unborn babies, whose humanity and inherent value to society shine through at the moment of birth. There is no telling how many precious lives could be saved if they did.
* Maternal serum tests measure the levels of certain substances in the mother's blood: alpha-fetoprotein (AFP), human chorionic gonadotropin (hCG), and estriol, and are combined with maternal age to calculate a risk factor for Down syndrome in a pregnancy. Another screening test, an ultrasound marker called nuchal translucency, measures the accumulation of fluids behind the neck of the fetus.
1 Forrester MB, Merz RD. 1999. Prenatal diagnosis and elective termination of Down syndrome in a racially mixed population in Hawaii, 1987-1996. Prenat Diagn 19(2):136-41.
2 Kramer RL, Jarve RK, Yaron Y, Johnson MP, Lampinen J, Kasperski SB, Evans MI. 1998. Determinants of parental decisions after the prenatal diagnosis of Down syndrome. Am J Med Genet 79:172-174.
3 Caruso TM, Westgate MN, Holmes LB. 1998. Impact of prenatal screening on the birth status of fetuses with Down syndrome at an urban hospital, 1972-1994. Genet Med 1(1): 22-8.
4 Wertz, DC. 1997. The Impact of Prenatal Diagnosis on Down Syndrome, Anencephaly and Spina Bifida. GeneSage, GeneLetter. Accessed at: www.genesage.com/professionals/geneletter/archives/theimpact.html
5 The National Down Syndrome Cytogenetic Register 2004 Annual Report. Accessed at: www.wolfson.qmul.ac.uk/ndscr
6 Siffel C, Adolfo C, Cragan J, & Alverson CJ. 2004. Prenatal Diagnosis, Pregnancy Terminations and Prevalence of Down Syndrome in Atlanta, Centers for Disease Control and Prevention, Atlanta, Georgia; Birth Defects Research (Part A) 70:565-571.
7 Grant SS. (September 30, 2000): Prenatal Genetic Screening. Online Journal of Issues in Nursing. Vol. 5, No. 3, Manuscript 3.
8 Skotko BG. 2004. Prenatally diagnosed Down syndrome: Mothers who continued their pregnancies evaluate their health care providers. Am J Obstet Gynecol 192, 670-7. [Life Issues Connector, 1/07, www.lifeissues.org]
Offering certain prenatal testing can have serious and even medico-legal ramifications.
How do you handle this area of modern medicine? The following is a recent article by Dr. Steve Calvin, aaplog member. Dr. Calvin is a Minneapolis physician and cochair of the Program in Human Rights and Health at the University of Minnesota.
Steve Calvin: OK to test for Down syndrome? It's complex
Prenatal diagnosis is now much easier and safer. But it is a mix of conflicting — and sometimes hidden — agendas.
The maternal instinct that motivates pregnant women is powerful and truly remarkable. In more than 25 years of obstetrical practice, I have seen mothers subject themselves to painful procedures, nasty medications and months of tedious bed rest — all motivated by the desire to nurture and protect a healthy baby. Fortunately most of their efforts are rewarded.
Early pregnancy can be a mixture of anticipation and anxiety. The possibility of
abnormality always lurks in the back of a mother's mind. One of these variations is Down syndrome — caused by the presence of an extra chromosome 21. It occurs at conception, and the ri
sk increases with maternal age.
In an unscreened population, 1 in 800 babies are born with DS. In Minnesota, that would be 75 to 80 children per year, or 5,000 in the entire United States. Approximately 350,000 people with DS are currently our fellow citizens.
Down syndrome causes significant health problems and social challenges. No parent would deliberately make their daughter or son face a life with DS, but many parents accepted the challenge when it came. In this they have many advocates and much support through organizations such as the Down Syndrome Association of Minnesota. There is even a waiting list of families willing to adopt DS children.
But I believe that we are at a tipping point. The counterweight to societal support for people and families with DS is the expanding availability and promotion of prenatal DS screening tests.
When DS is confirmed, abortion is offered. Increasingly, it is chosen. In England and some major U.S. cities, more than 90 percent of DS fetuses are aborted.
Now the American College of Obstetricians and Gynecologists recommends offering Down syndrome screening to all pregnant women. A Dec. 31 AP story in the Star Tribune explained why invasive tests such as amniocentesis were previously offered only to pregnant women older than 35, and why advances in noninvasive testing now make it "safer" to offer the test to all 4 million women who receive pregnancy care each year.
The new, noninvasive prenatal screening involves both ultrasound and lab testing done in the first 3 months. Almost all fetuses with DS can be detected with fewer women requiring amniocentesis, a painful diagnostic procedure that has a small but real risk of miscarriage.
I am all for decreasing unnecessary medical tests and for increasing the accuracy of the testing that we do. But I also support responsible use of medical resources, prudent public policy, truly informed consent, and ethical consistency. The newly promoted testing for DS deserves critical examination on all these accounts.
As physicians, we have many motivations to offer screening tests, not the least of which is fear of a potential lawsuit for a failed diagnosis. To be fair, most of my colleagues are simply motivated by a desire to maximize choices for patients. Abortion is not always chosen.
Prenatal diagnosis is a major advance in obstetrics when it allows appropriate care at birth. But is facilitating the prenatal destruction of "less-than-perfect" life a medical advance?
Some published cost-benefit analyses ominously promote DS screening using the "cost" to society of a DS life and the cost of tests and abortion. At best, this is an affront to parents who were told their DS child would never be able to count change, but now functions as a productive taxpaying member of society.
And the $1,000 or more that testing will really cost for each pregnant women is going to be a health care bank-breaker.
Is decision making truly informed when screening is offered using questions such as, "You want to do everything for your baby, don't you?" Prenatal diagnosis is a mix of conflicting, unacknowledged and sometimes hidden agendas.
Many women tell me of the subtle and overt pressure that they have felt to undergo prenatal screening and to have an abortion if DS is found.
The promotion of DS screening is analogous to supporting equal educational opportunity for children as long as they make it to school, while allowing and even encouraging overt discrimination toward some kids at the bus stop. This kind of ethical incoherence is unsustainable in a truly caring society.
[Dr. Calvin; 11Jan07, AAPLOG.org]