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What’s Lost in Prenatal Testing? Why Encourage Testing for Down Syndrome….

By Patricia E. Bauer
The Washington Post, Sunday, January 14, 2007;

She was a fresh-faced young woman with a couple of adorable kids, whiling away an hour in the sandbox at the park near my home. So was I, or so Ithought.

New in town, I had come to the park in hopes of finding some friends for myself and my little ones. Her eyes flicked over to where my daughter sat, shovel gripped in a tinyfist, and then traveled quickly away. The remark that followed was directed to the woman next to her, but her voice carried clearly across the playground. “Isn’t it a shame,” she said, an eyebrow cocked in Margaret’s direction, “that everyone doesn’t get amnio?”

It’s been more than 20 years, but I saw the face of that woman again when I read about the recommendation from the American College of Obstetricians andGynecologists (ACOG) this month that all pregnant women get prenatal screening for Down syndrome. I worry that universal screening brings us allcloser to being like that woman at the sandbox — uninformed, judgmental andunable to entertain the possibility that people with disabilities havesomething to offer.

The ACOG news release notes that the recommendations are based on consistent scientific evidence and will allow obstetricians and gynecologists to best meet their patients’ needs. Until now, women 35 or older were automatically offered genetic testing for Down syndrome; under the new guidelines, less invasive and earlier screening options will be extended much more broadly.

What’s gone undiscussed in the news coverage of the guidelines seems to be a general assumption that reasonable people would want to screen for Down syndrome. And since nothing can be done to mitigate the effects of an extra 21st chromosome in utero, the further assumption is that people would be reasonable to terminate pregnancies that are so diagnosed.

Certainly, these recommendations will have the effect of accelerating a weeding out of fetuses with Down syndrome that is already well underway. There’s an estimated 85 to 90 percent termination rate among prenatally diagnosed cases of Down syndrome in this country. With universal screening,the number of terminations will rise. Early screening will allow people to terminate earlier in their pregnancies when it’s safer and when their medical status may be unapparent to friends and colleagues. I understand that some people very much want this, but I have to ask: Why?Among the reasons, I believe, is a fundamental societal misperception that the lives of people with intellectual disabilities have no value — thatless able somehow equates to less worthy. Like the woman in the park, we’reassigning one trait more importance than all the others and making critical decisions based on that judgment. In so doing, we’re causing a broad social effect. We’re embarking on the elimination of an entire class of people who have a history of oppression, discrimination and exclusion.

Much of what people think they know about intellectual disabilities is inaccurate and remains rooted in stigma and opinions that were formed when institutionalization was routine. In fact, this wave of terminations and recommendations comes as people with Down syndrome and other intellectual disabilities are better educated and leading longer, healthier and more productive lives than ever. Nowhere in the fine print of the ACOG recommendations are these misconceptions or the advances of recent years recognized. Perhaps this is not surprising: OB-GYNS concern themselves primarily with mothers and well babies, not people with intellectual disabilities. But it’s frightening, too, when you consider the millions of lives affected by their guidance, explicit or otherwise.

Federally funded research has found that physicians have lower expectationsfor people with intellectual disabilities than do other professionals. Some 81 percent of medical students polled by Special Olympics in 2005 said that they are “not getting any clinical training” about people with intellectual disabilities. The Hastings Center found that 80 percent of genetics professionals polled said they personally would terminate a pregnancy involving Down syndrome. These are the people advising pregnant women in the harried days when the clock is ticking.

Here’s my fervent hope: that calls for universal prenatal screening will bejoined by an equally strong call for providing comprehensive information to prospective parents, not just about the tests but also about the rich and rewarding lives that are possible with disabilities. If physicians and genetics professionals are willing to learn from people with disabilities and their families, they can disseminate the nuanced, compassionate message at the core of diversity and human rights: All people have value and dignity and are worthy of celebration.

Plastic shovels no longer captivate Margaret. She’s more interested in her school roommates, her part-time job, the Red Sox and, at least recently,wrestling on TV. She knows how to hold an audience and how to bring down the house with a one-liner. And, like most of my relatives, she knows how to be an absolute pill some of the time. Such is life.

That day in the sandbox, I went home and cried. I didn’t know what to say. I didn’t know whether the woman was right. Today, I know. She was wrong.

The writer is a former Post reporter and bureau chief.

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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.

Steve Calvin

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 abnormalities is Down syndrome — caused by the presence of an extra chromosome 21. It occurs at conception, and the risk 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 decisionmaking 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.

Steven Calvin is a Minneapolis physician and cochair of the Program in Human Rights and Health at the University of Minnesota.

©2007 Star Tribune. All rights reserved.

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