Nursing Clio

As everyone who reads this blog (or is on Facebook or Twitter) is by now well aware, the Supreme Court’s recent ruling in the Hobby Lobby case has dealt yet another powerful blow to women’s right to access contraceptives and manage their own health care, reproductive choices, and bodies. But a recent law—this one in Louisiana and regarding prenatal testing and counseling—poses yet another, but much less recognized, threat to women’s reproductive freedom.

In May, Louisiana joined several other states (Massachusetts, Kentucky, Delaware, and Maryland) in passing a version of the Down Syndrome Information Act. This measure is part of the pro-information movement, which attempts to balance disparate groups and agendas within the Down syndrome community by bringing together both pro-choice and pro-life Down syndrome advocates in favor of providing women balanced, medically-accurate, and sensitive information about options when faced with a prenatal diagnosis of Down syndrome. The act as intended requires doctors to give appropriate medical information about the diagnosis and the options. It also requires doctors to give referrals to genetic counselors and relevant support services when delivering a prenatal diagnosis of Down syndrome to a patient.

However, Louisiana added a limiting stipulation to the law—one that mandates that state-sponsored materials should not “explicitly or implicitly” present “pregnancy termination as a neutral or acceptable option,”[1] even though professional standards dictate that doctors do so. So now Louisiana doctors will be faced with dealing with a state-specific law that requires them to give out information to patients that does not include neutral information on the option of termination, which violates professional standards of care (not to mention ethical or moral ones). As Nancy McCrea Iannone, co-author of “Diagnosis to Delivery: A Pregnant Mother’s Guide to Down Syndrome” and Prenatal Outreach Coordinator of her local Down syndrome group, argues in her recent piece on the issue, “Beyond destroying the original unity between left and right, beyond ignoring the hard-fought consensus among representatives of medical and Down syndrome groups, Louisiana’s legislation creates a very difficult situation for providers and patients alike.”[2]

The Louisiana law, unlike the ones in other states, was not spearheaded by the Down syndrome community. As Stephanie Meredith, the Lettercase/Medical Outreach Director at the University of Kentucky’s Human Development Institute and author of “Understanding a Down Syndrome Diagnosis” and the co-author of “Diagnosis to Delivery: A Pregnant Mother’s Guide to Down Syndrome” explains, “In most states, Ohio, Kentucky, Massachusetts, etc., the law was initiated by grassroots Down syndrome advocates who were truly trying to walk a fine line between respecting both reproductive and disability rights. In Louisiana, the law was driven largely by the Bioethics Defense Fund, and my understanding is that the leaders of the local Down syndrome organizations were unaware that the law had been introduced.”[3] This distinction in the origins of the bill is a significant one. The Bioethics Defense Fund frames the change to the law as an issue of discrimination and argues that presenting termination as an acceptable option for women in the event of a prenatal diagnosis of Down syndrome constitutes state-sponsored discrimination that violates the Americans with Disabilities Act. The Bioethics Defense Fund is a pro-life group concerned with creating “prolife policy guides” for legislatures to further their anti-abortion agenda, and it has played a significant role in the recent legislative attempts to erode reproduction rights for women.  Given the lack of Down syndrome advocates’ involvement in the development of the law and the Bioethics Defense Fund’s clear anti-abortion agenda, the change to the Louisiana law seems designed to co-opt a movement aimed at addressing the specific needs and concerns of those in the Down syndrome community and warping that movement to serve an anti-abortion, pro-life agenda.

Ironically, those in the Down syndrome community who advocated for the initial act argue that this new version of the law serves only to further the Bioethics Defense Fund’s pro-life agenda while sacrificing the needs of the actual community it’s pretending to serve. Mark Leach, a bioethics specialist at the University of Kentucky’s Human Development Institute, and Nancy Iannone have written about the problems of prenatal Down syndrome diagnosis and counseling and think that this change to the law will most likely do little to reduce termination rates in the event of prenatal diagnosis of Down syndrome. As they point out, ACOG guidelines for prenatal testing and diagnosis require that the option of termination be discussed. Further, Louisiana recognizes “wrongful birth/life” claims, which means that doctors who fail to meet the ACOG guidelines and counsel women about termination as an option would open themselves up to the possibility of a wrongful birth claim. Leach argues that, for Down syndrome prenatal diagnosis, the “inertia is heavily in favor of counseling about termination” because “the medical community is inculcated through their medical training and medical context to see prenatal testing as finding something ‘wrong’ that needs to be ‘fixed.’”[4] These advocates make the point that this new law will actually set back the cause of those in the Down syndrome community who wish to lower the rates of termination after a prenatal diagnosis of Down syndrome by not allowing doctors access to state-sponsored materials that aim to present this information in a balanced and neutral way. For example, the Lettercase booklet “Understanding a Down Syndrome Diagnosis” that is typically distributed under the original act presents termination as an option, but it also gives important information about what the diagnosis means for the child, information that can dispel misconceptions about the condition that might encourage women to terminate. Instead, the new law will encourage doctors to counsel patients based on their own assumptions and biases, whatever those biases may be.

Though it won’t address the needs of the Down syndrome community, the law will further erode women’s reproductive rights by legislating what information the Louisiana Department of Health and Hospitals can give women during their pregnancies. Like the recent Hobby Lobby decision, the change serves the primary purpose of making it clear that women’s reproductive choices are not a matter of health that should be determined by themselves in consultation with their doctors, but rather a matter of public debate and legislation. As Nancy Iannone puts it, the thinking seems to be that “the more friction you can insert into the process, the more you interfere with information getting to patients.”[5] The goal of groups such as the Bioethics Defense Fund seems to be to introduce as much “friction” as possible into the medical system when it comes to abortion. These groups chip away at our reproductive rights by disrupting the relationship between the medical provider and the patient, between the patient and the medical procedure, and between the patient and access to information. Given the cultural trend towards more and more restrictions on access to birth control and abortion, and a greater legal climate of legislation about how doctors can counsel and interact with their patients regarding reproductive choices, this law will discourage doctors from honestly and accurately counseling women on all of their options. While clearly the proponents of the law (given the Bioethics Defense Fund’s track record and clear anti-abortion stance) hope to make it more difficult for doctors to discuss termination, what the pro-information movement has shown, and many advocates in the Down syndrome community have come to realize, is that everyone’s best interests are served by giving women balanced, accurate, and sensitive information about their options.

Further, the language of the law itself raises red flags about what information the new literature put out by the Department of Health and Hospitals will contain. The law dictates that termination not be presented as “an acceptable or neutral” option. The implication of this choice of language is that the law allows termination to be presented as long as it is depicted as an unacceptable option or in a non-neutral (read: biased against termination) way. Will shaming and harassment about reproductive choices, then, become part of the medical model in the state? Those who are pro-life will undoubtedly see this possibility as a victory. Even those within the Down syndrome community who are generally pro-choice but are concerned about the rate of termination of Down syndrome pregnancies and who view the issue in terms of disability rights, rather than solely reproductive rights, might see it that way as well. However, it’s not hard to see how presenting the issue in an explicitly biased way designed to shame women into continuing pregnancies will surely not be an effective strategy. Even further, though shaming is unlikely to change women’s minds, as Iannone asserts, “shaming techniques are much more likely to result in increased emotional fall out for women who choose to terminate,”[6] putting the emotional health of these women at greater risk. In fact, Iannone points out, “shaming” potentially occurs with all women receiving a diagnosis, whether directed by those pushing termination or those discouraging termination: “The Lettercase booklet was written carefully to avoid any harmful persuasive language, and thus protects the emotional health of all patients receiving a prenatal diagnosis, regardless of their decisions.”[7]

The Louisiana legislature took one of the few areas in reproductive health that attempts to bring together those on differing sides of the abortion debate—the pro-information movement—and warped it into something that will weaken patient care and could potentially lead to state-sponsored shaming of women’s reproductive choices. This will also damage the very community it purports to serve and make it harder for women to have access to balanced, non-biased, and medically-accurate information when deciding whether or not to continue a pregnancy. Finally, it further weakens Louisiana women’s already tenuous ability to control their reproductive choices (the other abortion law passed in June in the state was a TRAP, a targeted regulation of abortion providers, likely to shut down abortion providers in the state). If prenatal testing and counseling is the new front of the abortion wars, then we can expect more attempts by organizations such as the Bioethics Defense Fund to legislate how and when doctors can give information about termination to their patients. Of course, that puts already vulnerable women—women facing difficult prenatal diagnoses—squarely on the front lines. That’s the real shame of this new law—it seems like the one thing that all sides of the issue should be able to agree on is the need to put women and their families first.

UPDATE: Since this post was written, Pennsylvania also passed a version of the bill called the Down Syndrome Prenatal Information Act (read about it here and  here), requiring that doctors give information from the state’s Department of Health to patients receiving a Down syndrome prenatal diagnosis. Pennsylvania’s bill does not mention information about termination or indicate that patients should receive any counseling on pregnancy options in the event of a prenatal diagnosis. Mark Leach also posted an important and interesting piece on just how contentious this issue is becoming within the Down syndrome community. He explores the tensions that prompted the National Down Syndrome Congress (NDSC) and the Global Down Syndrome Foundation (GDSF) to write and distribute their own Down syndrome prenatal diagnosis booklet that does not include information on termination, even though the NDSC and the National Down Syndrome Society (NDSS) were part of the Down Syndrome Consensus Group that came together to write the original Lettercase booklet in 2009.

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Works Cited:

[1] LA HB 1058

[2] McCrea Iannone, Nancy. “Keep Abortion Politics Out of the Pro-Information Movement.” How Did We Get into This Mess? 21 June 2014.

[3] Meredith, Stephanie. Message to the author. 3 July 2014. Email.

[4] Leach, Mark. Message to the author. 7 July 2014. Email.

[5] McCrea Iannone, Nancy. Message to the author. 9 July 2014. Email.

[6] McCrea Iannone, Nancy. Message to the author. 9 July 2014. Email.

[7] McCrea Iannone, Nancy. Message to the author. 11 July 2014. Email.