The practice has been described by one physician as “eugenic abortion.”One survey of 499 primary care physicians treating women carrying these babies, however, indicated that only 4 percent actively encourage women to bring Down syndrome babies to term.
Down syndrome, which occurs in individuals who have three rather than two copies of the 21st chromosome, causes distinct physical characteristics such as low muscle tone and upward slanting eyes. It also causes mental retardation, which can range from mild to severe.
With the advent and increasing use of pre-natal testing, according to studies in the United States and United Kingdom, a diagnosis of Down syndrome has led to as many as nine out of 10 women choosing to abort the child.
A 2000 anonymous survey of 499 primary care physicians in the United States, published by Georgetown University, indicated that only 4 percent of physicians who attend women whose babies are pre-natally diagnosed encourage them to continue the pregnancy and allow the baby with Down syndrome to be born.
Thirteen percent of doctors attending pregnant mothers whose babies are discovered to have Down syndrome, this survey said, “emphasize” the negative aspects of Down syndrome and 10 percent said they “urge” the mothers to terminate the life of the baby.
Sixty-three percent reported they “tried to be as unbiased as possible when delivering a pre-natal diagnosis” and 10 percent indicated they “emphasize” the positive aspects of Down syndrome.
A 1998 study by the Department of Newborn Medicine at Brigham and Women’s Hospital at Harvard Medical School, published in Genetics of Medicine, concluded that in 1972, 1 in 1,000 babies were born with the extra chromosome that causes Down syndrome.
“There was no pre-natal detection between 1972 and 1974,” said the report, which then measured how many women aborted their Down syndrome babies between 1972 and 1994.
“Between 1972 and 1994 the percentage of infants with Down syndrome who were liveborn decreased dramatically,” the report said. “In the early 1980s, this decrease reflected the impact of amniocentesis among women 35 and older.
“By the late 1980s, pre-natal detection was common among women younger than 35 years and detection was by several modalities including AFP screening, sonography and amniocentesis. When the (Down syndrome) diagnosis was established before 24 weeks of gestation, 86% to 87% of the parents chose elective termination of the pregnancy,” it said.
Another 1998 study by Wayne State University published in the American Journal of Genetics concluded that almost 90 percent of Down syndrome babies were aborted between 1987 and 1997.
“In conclusion,” the report said, “our data confirm that most patients referred to a tertiary care center are likely to choose termination of pregnancy after the diagnosis of Down syndrome, even in the absence of severe ultrasound abnormalities.”
The 2004 annual report of the Down Syndrome Cytogenetic Register at the Wolfson Institute of Preventive Medicine in London found an even higher number of abortions were done after a pre-natal Down syndrome diagnosis in Great Britain. In 2003, 91 percent of cases with known outcomes resulted in abortion. The same percentage was recorded in 2004.
ACOG wants more testing
Studies show pre-natal testing for Down syndrome has become increasingly common over the last three decades, however, the American College of Obstetricians and Gynecologists (ACOG) in January 2007 called for even more testing.
“All pregnant women, regardless of age, should be offered screening for Down syndrome,” according to the new Practice Bulletin issued (Jan. 2, 2007) by the ACOG.
“ACOG also advises that all pregnant women, regardless of their age, should have the option of diagnostic testing,” the Bulletin states. “ACOG recognizes that a woman’s decision to have an amniocentesis or CVS is based on many factors, such as a family or personal history of birth defects, and the risk of pregnancy loss from an invasive procedure.”
But Dr. Will Johnston, president of Canadian Physicians for Life, reacted to ACOG’s pre-natal testing endorsement as another step toward eugenics.
“The progress of eugenic abortion into the heart of our society is a classic example of “mission creep,’ ” Johnson said in an article posted on the group’s Web site in February 2007. “In the 1960s, we were told that legal abortion would be a rare tragic act in cases of exceptional hardship. In the ‘70s abortion began to be both decried and accepted as birth control. In the ‘80s respected geneticists pointed out that it was cheaper to hunt for and abort Down’s babies than to raise them. By the ‘90s that observation had been widely put into action. Now we are refining and extending our eugenic vision, with new tests and abortion as our central tools.”
Today, women of all ages who seek pre-natal care with an obstetrician are offered screenings that can estimate the mother’s risk of carrying a Down syndrome baby.
These screenings include a blood test to find certain “markers” associated with the genetic condition and sonograms, which doctors can use to measure the fluid in the neck of the baby, or nuchal translucency, which also can indicate that the developing baby has Down syndrome.
If the results of these screenings indicate there is a higher risk that an unborn child might have Down syndrome, doctors offer the mother additional diagnostic tests, including amniocentesis, which requires inserting a needle into the womb to draw amniotic fluid so the chromosomes of fetal cells can be examined.
Another test, Chorionic villus sampling, or CVS, collects fetal cells from the placenta via the cervix. Both tests are almost 100 percent accurate in detecting Down syndrome in an unborn child.
Because they are invasive, however, both tests can cause a miscarriage. According to ACOG and the federal Centers for Disease Control and Prevention, for example, between one in 400 and one in 200 women have a miscarraige after amniocentesis. Other complications that can arise from amniocentesis include injury to the developing baby and infection.
The risk of miscarriage after first-trimester amniocentesis may be three times higher than the risk after second-trimester amniocentesis, according to the results of the Canadian Early and Mid-Trimester Amniocentesis Trial Group, which were published in The Lancet in 1998.
Results of a 2004 study published in Obstetrics and Gynecology suggested that early amniocentesis may also increase the risk of the deformity called clubfoot.
According to the Royal College of Obstetricians and Gynecologists (RCOG) in London, the additional overall risk of miscarriage from amniocentesis is approximately one percent. In other words, about one in every 100 women who have amniocentesis under ultrasound guidance after 15 weeks will miscarry.
RCOG also claims that the additional overall risk of miscarriage from CVS is approximately two percent. In other words, about two in every 100 women who have CVS under ultrasound guidance after 10 weeks will miscarry.
Dr. Lewis B. Holmes, a geneticist at Massachusetts General Hospital who participated in the 1998 study on pre-natal testing at Brigham and Women’s Hospital, said that some patients refuse pre-natal screening.
“The (patients) who have strong religious or cultural leaning … don’t take the test,” Holmes told CNSNews.com. “So they make their choice very easily.”
But many, Holmes said, use the pre-natal diagnosis of Down syndrome as a reason to end the pregnancy.
“Even though you encourage, ‘take your time, take your time,’ they usually display a real sense of urgency,” Holmes said.
Some parents of children with Down syndrome told CNSNews.com that when they got their diagnostic test results, they did not get the information they needed about the condition and the resources that are available to them and their children.
Lucy Talbot, the mother of a Down syndrome child, is president of Families Exploring Down Syndrome, a support group of some 200 families in Michigan that have children with the genetic condition.
Talbot said her group’s Changing Lives program, developed by the National Down Syndrome Society, is designed to teach medical professionals how to give a compassionate diagnosis and provide the resources and support that parents need.
“(The doctor) says, ‘Your baby has these characteristics, we think your baby has Down syndrome,’” Talbot said. “They say, ‘We’re going to do some blood work,’ and they walk out of the room.”
“You’ve just changed a person’s life forever,” she said.
Dr. Holmes said he offers detailed information about Down syndrome to parents, as well as giving them the option of speaking with parents who have children with the genetic condition.
But Brian Skotko, a resident physician at Children’s Boston Hospital, said Holmes is the exception, not the rule. Skotko cited the results of a questionnaire sent out to 1,105 ACOG fellows and junior fellows in 2004.
Among the 60 percent that were returned, 80 percent said they felt qualified to counsel patients about genetic issues and pregnancy, but 45 percent rated their residency training regarding prenatal diagnosis as “barely adequate” or “non-existent.”
Skotko, who has a sister with Down syndrome and serves on several boards of Down syndrome advocacy groups, said pre-natal testing has put the fate of unborn children in their parents’ hands.
“Current testing affords couples to learn, if they so desire, pre-natally whether or not their fetus has Down syndrome,” Skotko said.
“I encourage all parents to think about and answer two essential questions, which I think can be their guideposts through all pre-natal testing that’s available during pregnancy. One, they need to answer for themselves when does life begin and then answer the question, what forms of human life are valuable?” he added.
“The first question will determine for them when life starts,” he said, “so what testing done at certain times may determine for them whether or not termination is allowable in their own moral compass.”
“And then once life begins, they then need to answer the other question, what forms of human life are valuable?” said Skotko. “Some people say, once life begins, all forms of human life are valuable--others say, once life begins, only certain characteristics are valuable.”
New tests could increase abortions
Now, a new pre-natal blood test that could check a baby’s DNA has been developed by researcher Dr. Stephen Quake and his team at Stanford University. Quake said a broader test is needed.
Carol Boys, chief executive of the Down’s (sic) Syndrome Association in Great Britain, told the BBC that the less invasive blood test will make pre-natal testing safer and more common.
“There is no question that these non-invasive tests will be introduced in the next few years,” Boys said. “It’s therefore incredibly important that potential parents are given accurate information on Down’s (sic) syndrome before they make a choice about whether to terminate or not.”
But Alison Davis of the No Less Human group that is a part of the British Society for the Protection of Unborn Children said in an article on lifenews.com that the new test wasn’t a positive development.
“"The new non-invasive test for Down's syndrome will inevitably mean more pre-natal testing, leading to more abortions of babies with the condition. Describing this as a 'breakthrough' is offensive to people who live with Down's syndrome, and to all who recognize the equal right to life of disabled people,” she said.
(Next story in this series: One woman who chose to give birth to her Down syndrome son speaks out.)