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Down Syndrome Laws Stir Debate

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Pennsylvania Gov. Tom Corbett, with Chloe Kondrich, 11, signed a law last month requiring medical practitioners in the state to provide families with information about Down syndrome when diagnosing the developmental disorder. (Jerome Lejeune Foundation)

Pennsylvania Gov. Tom Corbett, with Chloe Kondrich, 11, signed a law last month requiring medical practitioners in the state to provide families with information about Down syndrome when diagnosing the developmental disorder. (Jerome Lejeune Foundation)

Pennsylvania has joined a small but growing number of states requiring that a Down syndrome diagnosis be accompanied by useful, accurate information about the genetic disorder.

The Down Syndrome Prenatal and Postnatal Education Act, effective Oct. 1, mandates that medical practitioners give expectant or new parents “informational publications,” to be provided online by the state health department.

The Down syndrome advocates behind such state laws promote them as a way to give unbiased information to pregnant women at a momentous, stressful juncture. To date, laws are on the books in Maryland, Louisiana, Delaware, Massachusetts, Missouri and Kentucky in addition to Pennsylvania, according to the National Down Syndrome Society.

“This isn’t a partisan law. It’s not a pro-choice or pro-life law. It’s a pro-information law,” Kurt Kondrich, 51, of Upper St. Clair, Pa. said of the Pennsylvania bill he helped craft.

No doubt, though, advocates hope the information will discourage women from aborting affected fetuses now that noninvasive genetic testing is making diagnosis easier, earlier and more accurate.

In recent years, articles in popular media and even scholarly journals have carried such ominous titles as “Is Down syndrome doomed?” and “With new prenatal testing, will babies with Down syndrome slowly disappear?”

Kondrich has blogged about his fears of a “silent eugenic movement” against children like his daughter Chloe, 11.

“As prenatal genetic testing advances,” he wrote, “I challenge people to ask the question, ‘Who will be next to be identified . . . and eliminated because they don’t meet cultural mandates for perfection?’ “

Pennsylvania’s legislation was introduced in March by state Rep. Jim Marshall, passed with almost no opposition, and was signed by Gov. Tom Corbett — and Chloe — on July 18. Its track was quickened partly because medical groups such as the state chapter of the American College of Obstetricians and Gynecologists (ACOG) were not asked to weigh in.

The law “may be well-intended, but it clearly interferes with the physician-patient relationship, and ACOG opposes [it],” said Owen Montgomery, chair of ob-gyn at Drexel University College of Medicine.

Advocates for other genetic disorders may demand me-too laws, he said. “And what’s the penalty for non-enforcement?”

The Pennsylvania Department of Health cannot make sure all practitioners print out or give links to the informational publications, acknowledged spokesman Wesley Culp. The department is now working to select appropriate publications, which must include “physical, developmental, educational and psychosocial outcomes” and contacts for support services.

That choice could be tricky because of a question that has divided the Down syndrome community: Can information be considered unbiased if it doesn’t mention the abortion option?

The issue came to a head in 2008. Anticipating the debut of new noninvasive genetic tests, experts from major advocacy and medical organizations, including geneticist groups, developed an unprecedented guide called “Understanding the Down Syndrome Diagnosis,” available free online at lettercase.org. The booklet was supposed to become the resource to give parents.

But the next year, the two advocacy groups withdrew their backing rather than endorse two paragraphs on pregnancy termination. In 2012, they produced their own, briefer pamphlet, without mention of abortion.

“We have board members with Down syndrome,” said David Tolleson, director of the National Down Syndrome Congress. “In their minds, their advocacy organization should not be touting termination as coequal to other options. . . That’s like saying your life is not worth living.”

Today, such lives can be full and long — the average is 60 years, compared with 28 in the 1980s — thanks to laws protecting people with disabilities, and a shift away from institutionalization.

Down syndrome, caused by an extra copy of chromosome 21, causes mild to moderate intellectual impairment, physical delays, characteristic facial features, and in half of cases, correctable heart defects.

Most “people with Down syndrome now live at home,” says the Global Down Syndrome Foundation. “The overwhelming majority will learn how to read and write. Most are attending public school and some are graduating. More and more are holding down jobs.”

Still, prejudice persists.

Foundation cofounder Michelle Sie Whitten, whose 11-year-old daughter has the condition, recalled a genetic counselor showing her a video full of dire misinformation — then trying to comfort her by saying she could terminate the pregnancy.

Laws like Pennsylvania’s, she said, “are born of frustration in the Down syndrome community.”

The actual abortion rate is unknown, data being sketchy. A 2012 U.S. study estimated 67 percent, but many advocates cite 92 percent, from a 1999 international study.

The number of U.S. residents with the condition is also unclear, with estimates ranging from 250,700 to 400,000.

In any case, the picture may be changing.

Seven years ago, major medical groups urged that all women be offered screening and diagnostic tests for Down syndrome — not just those over 35, when the risk of chromosomal abnormalities rises.

But conventional screening yields many false alarms, while diagnostic tests, in which a needle is stuck into the womb, carry a tiny risk of miscarriage and can’t be done before 10 weeks of pregnancy.

That’s why the 2011 introduction of Sequenom’s noninvasive test was a watershed. With a sample of the mother’s blood at 9 weeks of pregnancy, “MaterniT21″ can extract and analyze fetal DNA to predict Down syndrome with up to 99 percent accuracy.

Sequenom, which has done 300,000 tests, now has competition from three other companies.

The right to abortion is a divisive moral issue, but for Down syndrome advocates, it is layered with questions about disability rights, self-determination, diversity and human dignity.

Louisville, Ky., lawyer Mark Leach, whose daughter has Down syndrome, tried to peel the layers in a blog entry titled, “What are we losing if Down syndrome disappears?”

“In this era of multiculturalism, biodiversity and interconnectedness, the loss of a kind of people seems intuitively to be tragic,” he wrote. “A narrowing of the diversity of the human condition does not seem to be something to be aimed for, but something to be regretted.”

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Comments (12 Responses)

  1. Dori Anderson says:

    It is ultimately the parents’ decision; but a percentage of anxious parents-to-be may be swayed. A difficult situation.
    Having worked with individuals with disabilities for over 30 years, I would like to see journalists use appropriate language such as “her 11-year old daughter with Down Syndrome or an intellectual disability” as opposed to “the condition”.

  2. vmgillen says:

    My daughter had Down’s (she passed away)… perhaps ALL prenatal tests, regardless of results, should include a strong recommendation for parents to do their research – AB/NT kids can be a real surprise when parents move from abstract thoughts of cute accessories to the frequently messy and costly reality of a child. BTW, how many abortions take place where there were NO prenatal tests? just wondering.

  3. Cathy P says:

    We adopted a 4 week old infant with DS 28 years ago. Last I checked, there was a long list of people waiting to adopt an infant with DS. That has to say something because these are people who have reviewed all the available literature about DS and made the decision to parent a child with DS so it just seems that biological parents should at least be aware of that same information. I don’t know why they would have to include the abortion option since I cannot imagine that this is something that people don’t already know. The fear that other disabilities would come to want the same? Why not? Someone carrying a child has an obligation to make the “best” decision not the easiest or the one the doctor would make. Our son always get a smile from people when we are out and his quality and appreciation for life far outshine many of the “normal” (not so normal to me) population. I do not believe that anyone can judge “quality of life” for an individual. Adoption is an option for those that do not want to parent.

  4. Laurie says:

    I’m so glad that prospective parents are given information about Down syndrome rather than just hearing only the negative issues (usually from people who have never known a person with DS). I completely agree, this is really just about being informed.

  5. Judith Greenbaum says:

    I do not have a daughter with Down syndrome but she does have moderate DD. When she was born alamost all MDs were telling parents with a child with Down syndrome that their child was “Severely” handicapped and should be institutionalized.
    This is a good law to counter the term “severely” and belp parents understand that children with Down syndrome have a range of abilities as well as disabilities, can go to school and learn,and can lead satisfactory lives.
    When and if parents are thinking of taking such a dire step as terminating a pregnancy they need to have the facts not some old fashioned nonsense.

  6. Liz Canto says:

    It is my feeling as a parent of a child with DS that Abortion must be part of the dialogue, as difficult as it is for many people to hear. It is and should still be an option offered to people. Not all children with DS do well and many still suffer a great deal based on involved health issues. Plus, the costs and supports are poor for people without extended family and monetary support. So as much as I hate to say it my feeling is that those that don’t want this as part of the conversation are in denial or have not struggled as many others have. Maybe their children are mild and do not have all the health issues and emotional issues that others might have.You can not keep this out of the conversation as an option. It is a reality that is tough, but it is still a parents right to be completely informed of all options.

  7. tom mcevoy says:

    The decision is the parents. Had we known that our son had Downs we may have aborted, but without some heart wrenching discussion. But, we did not know and we were given a son and brother that is a whole and complete person who we can’t imagine our lives without. He is our man. Wise and funny, he keeps us balanced. We love him so much it hurts. He holds two jobs and has and advice column on Facebook.

  8. Barbara says:

    My son is 23, with DS. Life is not sunshine rainbows and unicorns. That being said, I would not have aborted if I had known during pregnancy because I had been around children and adults most of my life with different challenges. And I support 100% legislation requiring up to date and comprehensive information on any and all genetic conditions. It just makes sense to give parents a complete picture. Abortion is still an option that parents can ask about, but I don’t see any need for it to appear in the information given to the parents any more than it would make sense to have abortion info in general handouts newly pregnant women may receive detailing what to expect during pregnancy.

  9. RandyLynn Barron says:

    Dori Anderson WELL SAID my friend. I’ll add that the limited information given is still prejudice. If it hadn’t been for a dear friend I’d never have learned about the most education and scientific organization The Institutes for the Achievement of Human Potential. They taught me so much and I saved my son’s life, he is 26 now!! Cheers good people. Cherish and learn from these wonderful people with an extra chromosome ;-)

  10. Mardra says:

    I believe the writer has just barely missed the point. The quote, “No doubt, though, advocates hope the information will discourage women from aborting affected fetuses…” Actually, speaking for myself as an advocate, instead consider that what advocates *hope* (are working towards) is that women will be able to make an informed decision, based on current evidence and information, about her choice to keep or abort. Certainly there *are* advocates who are Pro-Life – however there are also many advocates who are pro-choice. Given rise to the term- Pro-Information. It’s not a catch phrase – it’s the truth.

  11. Michael Weingram says:

    The concern I have is that the law was passed before the information it requires was available. Will it be only about the development of the child, or will it include information about the support services availability?

    It is unclear what the process is for developing or compiling the information. Also unclear is how will this information process be monitored, and who will monitor the people required to provide the information to the families.

  12. Mama2eight says:

    I’m all for giving good information to the parents! The information I got when I was pregnant and 35 was horrible! You would think that having a child with Down syndrome was the worst thing that could happen! We sure need to prevent that from happening! What?! It’s a baby that needs love and care.

    Five years later I gave birth to a little girl with Down syndrome. The books I read should have been burned! They still thought institutes were a good option. Very low expectations. I’m so glad my mother-in-law found some online support groups for me! They gave me realistic expectations. My daughter has done better than anyone expected. Don’t ever underestimate her! She will outsmart you! She’s one smart cookie!

    Why should abortion be part of the literature? This information is giving the other side of the coin. Does the abortion literature tell you why you would want to keep the baby? Just asking! If you don’t want to keep the baby, there are many families wanting to adopt.

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