What Does “Preventive” Care Mean? Further Thoughts on Prenatal Testing, Abortion, and Down syndrome

What does “preventive” mean?

Mark Leach (whose guest post this morning, “Supreme Court Unexpectedly Upholds Regulatory Elimination of Down Syndrome,” created quite a stir) and many others take it to mean that the government is advocating the prevention of the birth of children with Down syndrome. “Preventive,” by this reading, means an attempt to prevent Down syndrome. But many of you who commented today read “preventive” to mean something quite different. You read this language as giving doctors the ability to identify conditions like Down syndrome in utero and thus be better equipped to treat any subsequent health problems that arise as the pregnancy progresses.

Mark Leach’s post mentions a study about prenatal testing in California. He writes:

California has had a state prenatal testing program since the 1980’s. Program researchers have stated that the program’s purpose was to reduce the number of babies born with Down syndrome.

I asked him for the quotation he references since the full article is not available online. He replied with the quotation:

The California Prenatal Screening Program works to reduce the occurrence of birth defects and disability by offering prenatal screening and follow up services to pregnant women in California.

Are they intending to “reduce the occurrence” of Down syndrome itself or of potential complications associated with Down syndrome? Does “follow up services” mean abortion services or a more comprehensive set of medical options?

Back to the PPACA. What does “preventive” mean?

Perhaps to get at the answer it’s worth asking two other questions:

1. What is the intention of prenatal testing?

2. What is the result of prenatal testing?

I’ve recently been reading Testing Women, Testing the Fetus: The Social Impact of Amniocentesis in America by Rayna Rapp. Rapp chose to abort a baby in 1983 after an amniocentesis led to a diagnosis of Down syndrome. This experience led to a decades-long exploration of the significance of prenatal testing within our culture. Rapp writes, “The technology of prenatal diagnosis was developed explicitly to allow the selective abortion of fetuses facing serious disabilities because of atypical chromosomes and genes” (70). In other words, the initial purpose of prenatal testing was to give women the option to abort, and the vast majority of women who opted for such testing did so.

But even if prenatal testing was developed for the purpose of selective abortion, has selective abortion been the result? Moreover, is the government suggesting selective abortion of fetuses with Down syndrome as a collective good in the language used within the Affordable Care Act?

I’ve written before about the errors within the oft-quoted statistic that “90% of babies with Down syndrome are aborted.” This statistic is wrong for a variety of reasons, including the fact that it is out of date. At one point, of the small subset of women who chose amniocentesis during pregnancy and received a diagnosis of Down syndrome, 90% chose to abort. Now the number is probably closer to 70% with wide variations in various parts of the country and with reference to other demographic factors. In other words, prenatal testing with a diagnosis of Down syndrome very often, but with less frequency than in the past, leads to abortion.

And yet, prenatal testing can be used to provide prenatal care. Although the vast majority of women with a prenatal diagnosis of Down syndrome still chose abortion, an increasing number use a prenatal diagnosis as information that helps them prepare well to care for their child whether through emotional preparation or making a decision to give birth in a major medical center.

Is the PPACA’s inclusion of free prenatal testing as “preventive” care really an indication of a desire to prevent the births of babies with Down syndrome? Or is it a desire to help women prepare well for the births of their babies? Or something in between?

Regardless of intention, I hope that our representatives in Congress will call for a change in the language to consider prenatal testing an aspect of prenatal care. Moreover, if our government wants to demonstrate the desire to support and include individuals with disabilities and Down syndrome within our culture, representatives should lobby for funding of the Prenatally and Postnatally Diagnosed Conditions Act. Yes, the act calls for accurate and up-to-date information when offering a prenatal diagnosis, and yet it has gone almost entirely unfunded. At the same time, the NIH has received millions of dollars to pursue prenatal tests.

Prenatal testing was designed for the purpose of selective abortion. An increasing number of women use it for the purpose of prenatal care. Let’s hope the government demonstrates support not only to women who want the option of abortion when facing a prenatal diagnosis but also for the women who understand a diagnosis of Down syndrome as an opportunity to welcome another life into the world.

I am currently working on a book about prenatal testing to be published by Patheos Press early this fall. 

About Amy Julia Becker

Amy Julia Becker writes and speaks about family, faith, disability, and culture. A graduate of Princeton University and Princeton Theological Seminary, she is the author of Penelope Ayers: A Memoir, A Good and Perfect Gift (Bethany House), and Why I Am Both Spiritual and Religious (Patheos Press).

Comments

  1. Anna Quinn says:

    When my now 8-year-old daughter’s prenatal blood work showed a high likelihood of neural tube defects and her ultrasound showed cartilage in her heart (indication of Down syndrome), we received a letter from the state of California saying we might qualify for state funded testing and procedures. It gave us a number to call to follow up. It was all too obvious that state would prefer we abort, and it was creepy that our privacy was violated.

    • kristen inDallas says:

      Your doctor shared your confidential health records with a state agency? That is quite troubling.

  2. This is exactly what I said today when people were discussing the other post after the IDSC posted it on FB. Physicians need to be accountable for how they present a diagnosis. When I received a postnatal diagnosis, I wasn’t even given any information. It shouldn’t be that way. It needs to change.

  3. Mike Sullivan says:

    The answer lies in what benefit is there to the unborn child in being diagnosed with Down syndrome, bearing in mind that any health related issues should be picked up through routine antenatal health care, without a diagnosis. For example, off all babies born with a heart defect, only 4% have Down syndrome, but it is Down syndrome that is screened for.

    There is certainly no doubt that the main purpose of screening is birth prevention, and that the majority of births are being prevented where these programmes are in place. Preventing births based on biological difference points to eugenics.

    Lets remember that when the new blood tests were invented last year that the genetic scientists said that they hoped that it would encourage more mothers to take the test so that Down syndrome could be eradicated. That’s a big pointer to what is going on here.

    • I’ll answer from a personal perspective. My daughter’s duodenal atresia was picked up on a level 2 ultrasound after 20 weeks. I would not have had such an ultrasound without a prenatal diagnosis of Down syndrome. (And her heart defect was not visible at the first anatomy scan, so aside from CVS, Down syndrome may not have been picked up at all, or may have been suspected but not confirmed.)

      Our prenatal diagnosis allowed me to deliver Ellie with full monitoring, allowed me to have weekly NSTs, and most importantly, allowed us to have her transferred upon birth to the NICU and then to another hospital where she underwent a major surgery.

      Without the double bubble being confirmed, we would have fed her. She would have thrown up. A lot. She would have been unable to eat.

      Our prenatal diagnosis saved my daughter a world of hurt. So THAT is why it helpful. Yes, those same diagnostic tests are used for selective termination, but let’s not forget that some women have those tests to prepare.

      • Mike Sullivan says:

        I agree that where screening can provide life affirming care, then that is good. As a screening programme though, it is non therapeutic, as the level of harm through miscarriage is greater then the benefits across the whole population that is screened and tested. Presumably the health mandate could have ensured that screening is directed towards health care for the unborn child and not birth prevention.

        Certainly here in New Zealand have screening because the health service has stated that is cost effective as it is cheaper to prevent births than provide health care. That is how our health providers value our children’s lives.

  4. When we were having kids about 20 years ago, the only reason people gave for prenatal testing was to learn if the child had a defect that warranted abortion. We chose not to test.
    If instead the emphasis had been (as you suggest it should be) to assist parents to prepare for health issues, then we probably would have gone with testing. Once prenatal testing becomes a matter of care and not primarily an abortion-determiner, I think it will lose its stigma.
    Good job getting this conversation going, AJ.
    Tim

  5. Linda Aalderink says:

    Thanks for the conversations on this, Amy Julia. So important for our society and our kids.

  6. Mom to No One Important says:

    Since yesterday I have been doing a LOT of looking into the wording of the ACA and the recommendations of the IOM that went into the writing of the ACA over what is considered “preventive care.” Thus far, I have found no explicit mention of prenatal screening for chromosomal abnormalities being included in the preventive care provision. There is mention of “prenatal screening” with specific enumeration of screening for gestational diabetes, gonorrhea, syphillis, HIV, and hypertension during prenatal visits. While there is vague wording about genetic screening tests being offered during required prenatal visits, we all know that costs for testing or other procedures can, and often are, added onto the cost of an office visit. (An example would be an office visit for a cough that could be pneumonia. Diagnosis requires a chest X-ray, and there is often a separate bill for that than for the office visit where they tell you that you do have pneumonia.) There is also no mention of definitive/invasive testing being offered as preventive care, such as amniocentesis or CVS.

    • Amy Julia Becker says:

      @Mom to No One Important, sorry this took so long for me to get to you. I asked Mark Leach to comment on your message, and here is how he responded to me: Every time I discuss this, I always describe the provision as being “buried” within the PPACA regulations for preventive care services. Here is why:
      PPACA Sec. 2713 requires preventive care services for women. Health & Human Services (HHS) adopted regulations to provide these services, see 45 CFR 147.130, which adopt by reference the Health Resources and Services Administration (HRSA) guidelines. HRSA guidelines adopt the Institutes of Medicine (IOM) report on preventive care services for women. The IOM report requires no-cost well woman visits, which include prenatal testing for genetic and developmental conditions. Specifically, the IOM recommends “Well-woman preventive visits.” Included in the recommendations for these visits is “Prenatal Care for the Provision of Preventive Services.” It states, “The recommended content of the visit includes specific tests and procedures (e.g. … screening for … genetic or developmental conditions).”

      This is informed by the IOM report referencing earlier the National Business Group on Health’s “purchaser’s guide that recommends 46 clinical preventive service that should be included in employer health benefit plans.” Included in the recommended preventive services is: “Pregnant women should receive screening and counseling … for … prenatal screening and testing for … chromosomal abnormalities (for all women age 35 years and older), including, but not limited to amniocentesis, chorionic villus sampling, and ultrasound.” Further, the IOM’s “Recommendation 8″ states, “The committee recommends for consideration as a preventive service for women: at least one well-woman preventive care visit annually for adult women to obtain the recommended preventive services, including preconception and prenatal care.” At Table 5-6, the “List of Preventive Services to be Obtained During Well-Women Preventive Visits Under Recommendation 8″ lists for “Prenatal Care,” “Provide evidence-based tests, procedures, and screening for pregnant women to optimize birth outcomes and future chronic conditions, as well as topics for counseling and guidance for prenatal care.”

      The complete IOM report is accessible at this link: http://www.iom.edu/Reports/2011/Clinical-Preventive-Services-for-Women-Closing-the-Gaps.aspx

      The fact that the PPACA regulations requires no-cost prenatal genetic testing was discussed at a recent bioethics conference convened by Case Western, where panel speakers, including obstetricians and bioethicists, identified as yet another challenge to achieving informed consent, since the cost barrier will have been removed. Further, though these concerns have been expressed in print publications and in meetings with elected officials, there has not been a public statement expressing the negative, i.e. that prenatal genetic testing for conditions like Down syndrome are not included in the recommendations for no-cost prenatal care.

      I appreciate the commenter digging in to the process and I further appreciate the discussion my column has generated. Indeed, it is far more discussion than actually informed the drafting of the IOM report and the promulgation of the regulations. Hopefully, enough will have sufficient concern to ask for a change or clarification to the regulation.

  7. sonofbosco says:


    Let’s hope the government demonstrates support not only to women who want the option of abortion when facing a prenatal diagnosis but also for the women who understand a diagnosis of Down syndrome as an opportunity to welcome another life into the world.”

    Really?

    You can’t have it both ways… either it’s a life that needs protection or it’s not. My brother was diagnosed prenatally and it was a great assistance to help my parents PREPARE for Christian to arrive – not decide that this kid wasn’t worth their time and effort.

  8. wkdkween says:

    So what if prenatal testing leads to aborting a fetus with a disability? If a person is going to abort, they will. If a person is not going to abort, they won’t. It’s a personal choice. Why such an uproar. If you don’t want testing, don’t get it. No one is forcing you. Many people would like to be prepared. I had prenatal testing due to possibility of defects because of the medical history of the father. It was offered, not forced. You were told the statistics, risks, counselled and given a “choice”.

    • kristen inDAllas says:

      Not totally true. Some women are scared into getting the testing by doctors with a thousand what-if scenarios. If the tests come back a certain way the pressure to abort is real. A lot of people tend to defer to a doctor’s judgement on what tests they need and what they should do. Pregnant women are coursing with hormone, already scared and worried about being able to “do motherhood right” with so many different opinions out there (and people for some reason lose their filters around pregnant women) it is not always a predetermined decision. People tell you you’re a bad mother for not getting a test… then they tell you’ll be a failed mother if you try to raise a child with an abnormallity. That does have an effect.

  9. EnoughFish says:

    As long as it is used for what is, frankly, eugenics this tool will always carry a stigma and with good reason

  10. I keep hearing about pressure to abort, but I don;t see any and haven’t hears of any systemic pressures. If anything I see the opposite quite a bit. Now this might be because I am from Texas, and abortion is not up to women as much choice is obstructed from women. But I really feel that as there are no good adoption services, no good aid services, no way for some kids who cannot support themselves to grow up without relying on their parents, these are very personal questions for families. Adding services to provide help will further reduce the number of abortions, but lets not kid ourselves, we lionize parents of disabled children while not helping as we should, and families who publicly choose abortion are lambasted.

    this is tricky, and the eradication of Downs is a scary concept, but these aare also the tools to save lives and help children with other diseases.


CLOSE | X

HIDE | X