In a statement released this week, the National Down Syndrome Congress urged that doctors and other healthcare workers be required to provide up-to-date and accurate information about the lives of people with Down syndrome to women who are undergoing prenatal testing.

The statement comes in response to a recent policy shift by the American College of Obstetricians and Gynecologists (ACOG) which vastly widens access to prenatal testing for all pregnant women. In its Practice Bulletin No. 88, published in December, ACOG recommended that invasive prenatal testing including amniocentesis and chorionic villus sampling should be offered to all pregnant women regardless of age.

The December ACOG Practice Bulletin effectively makes all prenatal tests and screens available to all of the 6 million American women who get pregnant each year, thus establishing a new standard of care and ratcheting up expectations for insurance coverage and legal liability involving pregnancy.

In refuting what it called ACOG’s implication that “a baby with Down syndrome is a bad outcome that should be avoided,” the NDSC struck at the overwhelming correlation between prenatal diagnoses of Down syndrome and abortion in this country. About 90 percent of women who learn that their fetuses have Down syndrome choose to abort their pregnancies.

“The NDSC believes that individuals with Down syndrome have innate worth and should be treated with dignity and respect,” said the statement, which was unanimously endorsed by the organization’s 22-member board of directors. Three members of the board themselves have Down syndrome.

“Our goal is not to limit a woman’s access to prenatal screening, nor to limit her reproductive choices. Rather, it is to ensure the screening and diagnostic process is done in the context of an informed personal conversation with the woman’s doctor, during which current, balanced information is given about the reality of Down syndrome today,” the statement said.

Previously, amniocentesis and chorionic villus sampling were routinely offered only to women who would be over age 35 at the date of delivery, or who had a family history. The ACOG Practice Bulletin offered no rationale for the change, which marked the second time in a year that the professional organization dramatically expanded access to prenatal testing.

The NDSC statement criticized ACOG for presenting “no scientific evidence” to support its recommendation for the universal offer of invasive testing, and for failing to name the authors of the recommendation or discuss the authors’ potential conflicts of interest.

It heralds a broadening of the national conversation about where to draw the line between preventing disability and embracing human diversity. While the NDSC statement did not raise objections to prenatal testing and abortion in general, it implicitly questioned the ethics of singling out for elimination one particular fetus with a genetic difference that is not life-threatening.

In recent years, prenatal testing has exploded into a multi-billion-dollar worldwide industry, with tests available to detect hundreds of genetic disorders. Potential parents already have the tools to detect fetuses with such nonlethal traits as blindness, deafness, and a predisposition to diseases that don’t typically manifest themselves until adulthood, as well as surgically correctible problems like cleft palate and club foot.

At the same time, growing numbers of medical malpractice and “wrongful birth” lawsuits are pushing insurance costs for obstetricians to record highs, resulting in a situation that ACOG has called a “medical liability crisis.”

Studies have shown that many women choose to abort for diagnoses of less serious conditions, as well as to select their baby’s sex. Scientists theorize that it may not be long until prenatal tests can extend into such areas as homosexuality, intelligence and even male baldness, adding a new level of tension to the already heated abortion debate.

A poll by the National Opinion Research Center in 2006 found 70 percent of Americans saying that women should be able to obtain a legal abortion if there is a strong chance of a serious defect in the baby. But the NDSC position calls attention to the fact that there is no national consensus on what exactly a “serious defect” might be.

A 2005 study by the Guttmacher Institute found 13 percent of women who had abortions reporting that possible problems affecting the health of the baby contributed to their decision to terminate. Some 1.21 million abortions were reported in 2005, the most recent year for which figures are available.

The NDSC is one of two national organizations representing the approximately 350,000 Americans who have the condition, as well as their families. Down syndrome, a non-life-threatening condition in which people have 47 chromosomes instead of the usual 46, is generally marked by mild to moderate cognitive impairment as well as a tendency to heart problems and some other medical conditions.

It is the leading target for prenatal testing because it is the most common genetic birth defect, occurring once in every 733 to 1,000 births, according to the NDSC and the National Down Syndrome Society.

Families of people with Down syndrome are becoming increasingly vocal in advocating on their behalf. They maintain that their loved ones are valued citizens, and say obstetricians and gynecologists have largely failed to inform prospective parents of medical and educational advances that have dramatically improved the lives of people with Down syndrome and more than doubled their life expectancies in recent years.

A 2005 study in the journal Pediatrics found physicians using negative language when delivering diagnoses of Down syndrome, and failing to provide accurate and up-to-date information to prospective parents.

If prenatal testing can take place in an atmosphere of informed consent, based on accurate and balanced information, the NDSC wrote, “… we hope decisions can be made based on knowledge and not fear.”

This entry was posted on Friday, January 18th, 2008 at 2:32 pm and is filed under Down syndrome, NOT2BEMISSED, PB Articles & Essays, abortion, genetics, prenatal diagnosis. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.  Email This Post