A new perspective on prenatal screening

Writing in Canada’s professional journal of obstetrics, representatives of the Canadian Down Syndrome Society raise strong questions about the ethical implications of recent recommendations that all pregnant women be offered prenatal screening for Down syndrome.

“Our vision is of a proud Canada where all are welcome, where diversity is embraced, and where everyone’s genes are valued equally.”

CDSS vice-chair Rhonda Grant and executive director Krista Flint define Down syndrome as “a naturally occurring chromosomal arrangement that has always been part of the human condition.”

They maintain that social constructs and belief systems have aligned to cause perceptions that DS is a birth defect or an illness, a perception they say is flawed. They draw parallels between Down syndrome screening and prenatal sex selection, saying both practices are rooted in cultural biases that cause inequitable treatment and reduced quality of life for the targeted group.

Among their recommendations:

• Professional education for physicians and health care providers about the reality of lives lived with Down syndrome.


• A broad-based effort to provide accurate and balanced information to pregnant women, both about DS specifically and also about the realities of life with a disability.


• The use of value-neutral language by doctors in discussing Down syndrome with patients.


• A comprehensive plan to put prospective parents in contact with support groups or other knowledgeable parties.

Grant and Flint note that two members of the organization’s 11-member board have Down syndrome, as do twelve members of a board advisory committee. They describe the advisory board members as “university students, entrepreneurs, artists, employees and spouses who share our concerns about the new recommendations from the Society of Obstetricians and Gynaecologists of Canada (SOGC) and the implications of those recommendations for them and other people with disabilities.”

The letter is published in the July issue of the Journal of Obstetrics and Gynaecology Canada (JOGC), Canada’s peer-reviewed journal of obstetrics, gynecology, and women’s health.

MS discovery sparks predictable treatment hopes

Scientists reporting in the New England Journal of Medicine report that three genes will offer new understanding to multiple sclerosis and may lead to new treatments. Skeptics among us will be forgiven for remembering that scientists had the same idea half a century ago, after French geneticist Jerome Lejeune identified the triple 21st chromosome in Trisomy 21 (Down syndrome). And have new treatments for Down syndrome materialized? Nope. There are, however, lots of very profitable prenatal screens and tests that are widely used to prevent the births of infants with Down syndrome.

Diabetic and determined

Team Type 1 in training. Photo by New York Times

The New York Times reports that athletes with Type 1 diabetes are "blasting out of the starting gate in full force.

"Because of new technology, the emergence of companies that help them manage their illness, the rise of successful role models and sheer determination, they are running marathons, doing 100-mile bike rides, completing Ironmen — many with their doctor’s blessing."

Democrats shift policy on abortion

Stephanie Simon, writing in the Los Angeles Times, notes that Democrats in Congress and on the campaign trail are adopting some of the language and policy goals of the antiabortion movement.

"In a striking shift, Democrats in the House last week promoted a grab bag of programs designed not only to prevent unwanted pregnancies, but also to encourage women who do conceive to carry to term.

"The new approach embraces some measures long sought by antiabortion activists. It's designed to appeal to the broad centrist bloc of voters who don't want to criminalize every abortion — yet are troubled by a culture that accepts 1.3 million terminations a year."

The story also notes the return of the Kennedy-Brownback bill, which disappeared in committee in the last session of Congress and was reintroduced last week.

"Liberal stalwart Edward M. Kennedy (D-Mass.) is working with staunch conservative Sam Brownback (R-Kan.) to mandate more support services for pregnant women carrying fetuses with genetic abnormalities, such as Down syndrome. Focus on the Family, an influential conservative ministry, praises that bill as 'lifeaffirming.' "

Millions for "wrongful birth"

Amara Estrada, right, hugs the wife of her attorney after the judgment was announced.
Photo from the St. Petersburg Times

A jury has awarded a Florida couple more than $20 million in what is being called a "wrongful birth" case. The parents had alleged that a geneticist was negligent in failing to prenatally diagnose their child's genetic syndrome. They testified that they would have terminated the pregnancy had they known.

" ... because the doctor works for the University of South Florida, the family will have to persuade the Florida Legislature to award most of the money. State law caps negligence claims against government agencies at $200,000.

"Daniel and Amara Estrada claimed in the lawsuit that if their first child's condition - a genetic disorder called Smith-Lemli-Opitz syndrome - had been correctly diagnosed, a test would have indicated whether their second child would also be afflicted ...

"But, they say, Dr. Boris Kousseff, who treated their first son, Aiden, after his 2002 birth determined that the child's birth defects were not specific and did not diagnose Smith-Lemli-Opitz syndrome."

Related links:

-- From the St. Petersburg Times, this story:

"From the moment their son was born, Amara and Daniel Estrada knew he would suffer. Baby Aiden had webbed toes, a cleft palate, low-set ears, a small head and genitals so tiny doctors had a tough time determining his gender..."

-- Link to the Smith-Lemli-Opitz Foundation website.

No genetic privacy? No problem.

Medical investor Esther Dyson explains why she feels comfortable exposing her genetic and medical information on the Internet. She acknowledges that she doesn't have deep secrets or vulnerabilities that might expose her or her relatives to stigma or loss of insurability, and wonders what transparency may mean to others who are "less fortunate."

No matter, she says; the broader spread of medical and personal information on the Internet and elsewhere is "inevitable." See her Wall Street Journal column here.

The next generation of bionic people

New Yorker staff writer Ben McGrath chronicles the life of Claudia Mitchell, a young woman who loses her arm in an accident and gets a bionic replacement. The story in the July 30 issue is available at newsstands, not on the Internet.

A helping hand for families living with chronic illness

The Los Angeles Times reports on three nonprofit websites that offer web pages to families with chronic illness, allowing them an easy and effective way to communicate with family and friends. Leading sites are Caringbridge.org, CarePages.com and theStatus.com. Families praise them for helping to promote a community of care around their loved ones.

Alzheimer's treatment seen

And while we're on the subject of doom, Alzheimer's style, British researchers report that an effective treatment may not be far off. From the (London) Evening Standard. Link here.

Amnio report sparks disability debate

A report in the current Journal of Obstetrics and Gynaecology of Canada concludes that American data has understated the risk of miscarriage during amniocentesis. The paper quotes the authors as saying that the American findings are “misleading and should be interpreted with caution.” Story from the (Toronto, Canada) Globe & Mail here. The story sparked an impassioned public comment session, with newspaper readers debating the value of late-in-life pregnancies and the lives of people with disabilities. Link here.

Fetal medicine expert tells all

In an interview in the (UK) Guardian & Observer, fetal medicine pioneer Charles Rodeck tells us how things look from his side of the examining table. It's a sobering view. Rodeck is the founder and head of the unit for fetal medicine at University College Hospital, London, and was among the first physicians to pioneer fetal ultrasound in the seventies.

Among his revelations: doctors are increasingly being called upon by panicked parents to predict the level of disability that may be present in a child, and they are not equipped to do it.

... Unless a fetus is suffering from a particularly well-defined abnormality, it is impossible for a physician to predict how a condition will manifest itself in any child. "Our diagnostic abilities have outstripped our therapeautic skills," Rodeck said. "We now screen more women and can identify a huge variety of abnormalities, but we still can only treat a minuscule fraction...."

"... I have to tell parents all the time that just we don't know or can't predict exactly how their child will be affected by any particular condition," he said. "Often we can't even give a name to the abnormality suffered by a fetus...."

Rodeck also offered stiff criticism to the commercial IVF industry, which he characterized as "very competitive."

"Some clinics try to keep a step ahead by offering more interventions than their competitors, even if they know these procedures are uproven and may not work. This can become exploitation..." He said he is particularly concerned about a growing number of pregnant women he sees who have been prescribed unnecessary, unproven and possibly harmful drugs by private clinics.

The full story can be seen here.

Who is helped and who is harmed by using donor eggs?

The practice of using donor eggs for assisted reproduction is growing dramatically, giving older and infertile women new hope of giving birth. (Your Gamete, Myself, by Peggy Orenstein, New York Times magazine, July 15.) While we hear lots of enthusiasm among those who stand to profit personally or financially, the sad truth is that many thousands of young egg donors are being lured by the promise of quick cash without adequate information about the risks they may face of serious physical harm, damage to their future fertility, or even death.

Because egg donation is virtually unregulated, long-term studies about the effects of intense hormonal medications and surgical procedures on young women have not been done. Women and their doctors ought to lobby for regulation and oversight, so the safety of egg donors will not be overlooked in the market’s multi-million-dollar quest for eggs promising certain hair color, eye color, and taste in movies.

Related links:

From the New England Journal of Medicine: The egg trade -- making sense of the market for human oocytes, Debora Spar, March 29, 2007

From the BBC: Safety of egg donation 'unclear' -- June 30, 2005

Early screening cuts births of children with Down syndrome by 50 percent in Denmark

Early ultrasound screening, coupled with a blood test, has reduced the number of children born in Denmark with Down syndrome by 50 percent, according to Professor Karen Brondum-Nielsen of the Kennedy Institute in Glostrup, Denmark.

The findings were the result of an analysis of data collected in three counties in Denmark, accounting for about one-fifth of the nation’s population, for the years 2004 to 2006. The analysis followed a recommendation for new guidelines for prenatal diagnosis in 2004 by Denmark’s National Board of Health.

Until September 2004 the Danish government had recommended that only pregnant women over the age of 35 should be offered the combined non-invasive tests, which are carried out between the 11th and 14th weeks of pregnancy.

But Denmark's national health board subsequently recommended that the early tests should be made available to all women who requested them, regardless of age. The combined testing regimen included a nuchal translucency ultrasound along with a maternal blood test.

Brondum-Nielsen reported that women whose initial screen indicated an elevated chance of Down syndrome were then offered an invasive test (amniocentesis or chorionic villi sampling). As a result of the early screening, she said, rates of invasive testing declined during the period studied.

See the reports here and here.

"... The professor concluded that there was a need to analyse the psychological impact of the policy, both in regard to the pre-test counseling available to pregnant women and their attitudes towards screening."

Prenatal screening tied to MD concerns over lawsuits: Economist

In a report from the Economist, ACOG's prenatal testing and screening guidelines are attributed at least in part to physician worries over wrongful birth litigation. See the story here:

Wanted: Perfection. Doctors try not to be sued over Down syndrome babies

Key quote:

The new guidelines may also be triggered by the surge in lawsuits. In November an ACOG survey found that 65% of obstetrician-gynecologists had reduced their practices for fear of liability claims. Clinic workers confirm that women who have imperfect babies tend to blame doctors. One nurse says her clinic can't afford the insurance to ward off the suits. 'If more tests reduce our risks, then so be it.' (emphasis mine)

What's remarkable to me is that more media attention hasn't been paid to the connection between wrongful birth lawsuits, lack of tort reform and the broadening of prenatal testing. Although ACOG has presented the guidelines as a response to requests from women, the Economist makes the point that the guidelines often are not well implemented, and many women are feeling ill-served.

From the story:

Many obstetricians are clearly overworked, with no time to offer more than suggestions and results. And although the guidelines describe these tests as options, many pregnant women are feeling badgered. Some are being asked six times or more whether they want an amniocentesis.

The economic subtext becomes more clear when you read the most recent ACOG report on litigation here. Among the key findings from the 2006 ACOG survey on professional liability:

-- Almost 70% of ob-gyn survey respondents have made changes to their practice as a result of the affordability and/or availability of professional liability insurance, and 65% have made one or more changes to their practice as a result of the risk or fear of professional liability claims or litigation.

-- A total of 89% of respondents indicated they had at least one professional liability claim filed against them during their professional careers, or an average of 2.6 claims per ob-gyn.

-- Top lawsuit allegation made against gynecologists: delay-in or failure-to-diagnose.

In other news:

From USA Today:
A mother's view of a word that wounds: 'Retard'

From the Independent (UK):
Screening IVF embryos 'can damage birth chances'
(See the original report in the NEJM here.)
Childhood asthma gene identified by scientists

From the Guardian (UK):
Benoit son's disability questioned

From WPVI-TV in Philadelphia:
Gifts for every parent

Prenatal screening panic

Dear Pat,

A dear friend's niece is facing a crisis. She is pregnant at 35 with one little daughter, and the prenatal screening tests are showing but not yet conclusively the possibility of Down Syndrome in this pregnancy. She is understandably overwhelmed. She won't have a complete report for another 10 days. Do you know what resources are available for counseling and helping a woman at this point in her life? I am sure there are many and some will presumably come from the OB-GYN, but if you have any suggestions, they would be welcome.

I have always told my daughters that in any critical situation there is time, as strange as that may sound, to still examine things and think them through. This definitely feels like one of those moments. This woman is utterly overwhelmed and I have tried to offer my friend encouragement to help her slow down, gather information, think carefully and proceed with care. The stakes on either side of her choice are very high.

What can we tell her?

Claudia
______

Yes, you're right: there is time to gather information and think it through. Unfortunately there’s a lot of confusion out there, and it seems that we’ve been much more successful in developing tests than in helping people interpret the results.

First, there’s the confusion about the tests themselves. Your friend should be aware that the prenatal screens used in the first trimester produce data in what is called a "probabilistic" format. In other words, they are not definite; they say that you may have one chance in X number of a particular result.

It's important to know that what the woman receives are odds (sort of like Saturday night in Las Vegas), and that the screens are designed in such a way that they deliver many false positives as well as false negatives. I've had email from women who have been told they had a high probability of a child with DS only to have a child without it, and women who were told their child would likely not have DS and then did have it. In all likelihood, her doctor will recommend followup testing of amnio or CVS, which will offer more definitive (although not infallible) information.

Then there’s the confusion about what a diagnosis of Down syndrome could mean. Everyone is unique, and there’s no way to predict what a person will be able to do by looking at their chromosomes. Recent advances in education and healthcare have brought about marked improvements in outcomes for people with DS these days, according to parent reports. (See "Prenatal tests put Down syndrome in hard focus" in the New York Times.) But national outcomes data is not kept, so it's understandable that medical professionals who have minimal contact with people with DS may well be unaware of progress that parents are seeing.

In a recent survey of mothers of children with DS published in the American Journal of Obstetrics and Gynecology, Dr. Brian Skotko found that parents feel obstetricians and genetic counselors fall short when it comes to delivering a prenatal diagnosis of Down syndrome to pregnant women. (You can access the study here.) Mothers who received a prenatal diagnosis of DS reported that doctors did not give them a balanced view of the possibilities and realities of life with Down syndrome, and did not provide up-to-date information.

With that in mind, your friend might want to contact her local Down syndrome organization. In my experience, predictions by doctors and lists of symptoms in medical textbooks can be very limiting. It’s not until you meet other families and get current information that you begin to see the possibilities. The National Down Syndrome Congress and the National Down Syndrome Society, available on the internet here and here, may be able to help you find a local affiliate.

And if that’s not enough to think about, you should also be aware that OB/GYNs are feeling the bite of rising medical liability insurance costs as courts in some states have been awarding damages in what are being called "wrongful birth" lawsuits. With that kind of backdrop, it's understandable that many doctors are insisting that women get prenatal screening (or sign a waiver declining it) as a way of warding off potential lawsuits. Sadly, this only adds to the level of anxiety that surrounds the topic of prenatal screening.

As I'm typing this, my daughter Margaret is busily reading "Julia and Jacques Cooking at Home" by Julia Child and Jacques Pepin, looking for recipes for tonight's dinner. She has completed high school and a post-secondary culinary arts program, and is excited that she will be moving into her own apartment with a couple of girlfriends (with some help from mom and dad) later this summer.

I guess I'd want to tell your friend that in the final analysis, being a parent to any child is both work and a gift. Like many things in life, it mostly requires that we keep smiling and keep showing up. Having a few good friends also makes a world of difference.

P.S. Here's a link to a story from the Sacramento Bee the other day about a "precocious" third-grader who's performing in her local junior production of "The Music Man." Her name is Katina and she's got DS. The photos are adorable.

Topics in prenatal diagnosis: Cosmetic enhancement, bullying, homophobia ....

The British Human Fertilisation and Embroyology Authority has granted a license to a London family clinic to screen embryos for a genetic disorder which causes a severe squint. The action is being described as the first time a British clinic will be allowed to screen embryos for cosmetic problems. Critics say the action is inappropriate because the condition is not life-threatening. Story from the BBC here; from the London Telegraph here.

The Telegraph account quotes Prof. Gedis Gurdzinskas, who received the license, as saying that he would screen for any genetic factor, cosmetic or otherwise, that might cause a family severe distress.

When asked if he would screen embryos for factors like hair colour, he said: "If there is a cosmetic aspect to an individual case I would assess it on its merits.

"[Hair colour] can be a cause of bullying which can lead to suicide. With the agreement of the HFEA, I would do it. If a parent suffered from asthma, and it was possible to detect the genetic factor for this, I would do it. It all depends on the family's distress."

As long as there is money to be made screening pregnancies and embryos, there will be no shortage of people willing and eager to perform the service. But as the saying goes, the fact that we can do a thing is not an argument that we should. Increasingly, it seems, we are turning to market forces to eliminate problems that more properly should be addressed by social action. Prenatal screening to avoid bullying by those who don't like our hair color? Please.

If parents perceive themselves as being morally obliged to create "perfect" children who will not arouse social opprobrium, society will inevitably become less tolerant of those who are different, whether that difference resides in disability, a luxurious crop of red hair, or sexual orientation. For more on the topic of selecting for sexual orientation, see Alice D. Dreger on the Bioethics Forum: "Liberty and Solidarity: May We Choose Children for Sexual Orientation?"

She argues that prenatal screening attaches negative attitudes to the conditions that are screened, recounting a case in which a friend was "scolded" by a stranger for having a child with Trisomy 21 (Down Syndrome).

"I can fully imagine a scenario where, thirty years from now, a woman tells a friend her son has come out as gay, only to have the friend respond, “Didn’t you get the test?!” Could we really imagine that offering such a test would have no negative impact on how an already-homophobic culture views people who are gay (and their parents, for that matter)?"

Here's her conclusion about prenatal screening and termination for homosexuality (which she credits to researcher Simon LeVay:

"... we shouldn't ban it. Because that would be allowing governments to make decisions about our reproductive choices, which isn't a good idea. . . . But I reserve the right to become hysterical about it.”

Now that's productive.

More on the so-called "gay gene" from the Toronto Star here.

Still more on the "pillow angel" saga

The Seattle Post-Intelligencer carries an insightful column by Anne McDonald about Ashley, the 6-year-old girl whose uterus and breast buds were removed at the request of her parents. The parents had argued that it would would be easier to care for their daughter, who has mental and physical disabilities, if she did not grow to an adult size, and that a childlike body would afford her "more dignity and integrity than a fully grown female body." In their blog, the parents (who have not revealed their identities publicly) refer to their daughter as "Pillow Angel."

Last month, in the face of an investigation and mounting controversy by disability rights advocates, Children's Hospital in Seattle admitted that the hysterectomy was illegal. See link.

McDonald's column explores her own experiences as a child whose growth was attenuated and whose potential was overlooked by medical professionals. She questions the assessments of Ashley's abilities, and criticizes the decision to subject the girl to surgery without an effort to obtain her participation and consent for the procedure.

Her words:

"My ongoing concern is the readiness with which Ashley's parents, doctors and most commentators assumed they could make an accurate estimation of the understanding of a child without speech who has severely restricted movement. Any assessment of intelligence that relies on speech and motor skills cannot conceivably be accurate because the child doesn't have any of the skills required to undertake testing. To equate intelligence with motor skills is as absurd as equating it with height.

"The only possible way to find out how much a child who cannot talk actually understands is to develop an alternative means of communication for that child. An entire new discipline of non-speech communication has developed since I was born in 1961, and there are now literally hundreds of non-speech communication strategies available. Once communication is established, education and assessment can follow, in the usual way.

"No child should be presumed to be profoundly retarded because she can't talk. All children who can't talk should be given access to communication therapy before any judgments are made about their intelligence.

"Ashley's condemned to be a Peter Pan and never grow, but it's not too late for her to learn to communicate. It's profoundly unethical to leave her on that pillow without making every effort to give her a voice of her own."

More unintended consequences of prenatal diagnosis

A friend sends this article from the Sunday Times in London. Here's the text:

"More than 20 babies have been aborted in advanced pregnancy because scans showed that they had club feet, a deformity readily corrected by surgery or physiotherapy."

The article goes on to say that abortions were also carried out for webbed fingers or extra digits, which can be corrected by simple surgery. All the terminations took place after the 20th week of pregnancy, although the specific week of pregnancy for each was not disclosed. The data, from the Office for National Statistics, added to controversy that had been ignited when a British woman had an abortion at 28 weeks for cleft palate, another surgically correctible condition. It's worth noting: babies delivered at 27 weeks have a survival rate of more than 90 percent.

More text from the article:

"Some parents, doctors and charities are increasingly worried by what they see as a tendency to widen the definition of “serious handicap”. The handicap provision, which does not exist in most other countries, permits abortions to be carried out until birth. It was intended to save women from the trauma of giving birth to babies likely to die in infancy."

Among people who have had club foot: Kristi Yamaguchi, the American figure skater who won an Olympic gold medal in 1992.

PWD* reacts to prenatal screening

The Washington Post runs letters in response to "Haunting Echoes of Eugenics." Bridget Brown, a woman with Down syndrome, compares widespread prenatal screening and termination with genocide directed toward people with disabilities. Her words:

I have a full and wonderful life, and the world needs to know that I do not "suffer" from Down syndrome. Most people I know with disabilities have full and productive lives. My heart breaks when I think that I might be part of the last generation of people with Down syndrome. The world will never again benefit from our gifts. But I will continue to hold hope for people with disabilities. And I will pray for all the people who think we don't have the right to live.

Ms. Brown's letter goes to the heart of the ethical conundrum surrounding universal prenatal screening, which Michael Sandel powerfully explores in "The Case against Perfection: Ethics in the Age of Genetic Engineering" (just out on Harvard University Press). Is total reproductive choice completely beneficial to society? Ms. Brown's experience doesn't lead her to that conclusion. As a person with a disability* (PWD), she encounters daily the uninformed and negative preconceptions people have about her and the quality and value of her life.

Sandel explores the issues around reproductive choice and views it as a mixed blessing. He worries that individuals who are granted this kind of control over their children will come to be held accountable for their children's perceived flaws. The implication: that those who screen and terminate will come to be seen as "responsible" parents, thus justifying a society that lacks empathy and compassion for the lives of those who differ from accepted norms.

Taken together, the aggregation of our private, individual decisions seems to reflects a deep and undiscussed discomfort with those who are different. The implicit message we seem to be sending is that while ethnic diversity is valued and supported in our society, genetic diversity is not. How comfortable would any of us be explaining that paradox to Ms. Brown?

Further reading on this topic: "Confessions of a 'Genetic Outlaw'", by Elizabeth R. Schlitz, in Business Week, July 20, 2006.
____

It's worth noting: this is not a discussion about Roe v. Wade. It is a discussion about the paucity of informed consent in prenatal screening, and the collective social effects of individual decision-making.

What's Lost in Prenatal Testing

By Patricia E. Bauer
The Washington Post
Sunday, January 14, 2007; B07

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 I thought. 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 tiny fist, 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 and Gynecologists (ACOG) this month that all pregnant women get prenatal screening for Down syndrome. I worry that universal screening brings us all closer to being like that woman at the sandbox -- uninformed, judgmental and unable to entertain the possibility that people with disabilities have something 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 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 -- that less able somehow equates to less worthy. Like the woman in the park, we're assigning 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 expectations for 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 be joined 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.