Prenatal Testing and Disability Rights: Challenging “Genetic Genocide”

Studies in Law, Politics, and Society

ISBN: 978-1-78756-208-0, eISBN: 978-1-78756-207-3

ISSN: 1059-4337

Publication date: 19 July 2018

Abstract

This paper examines the implications of the disability rights critique of prenatal testing on the development of genetic policy and abortion rights. It traces the reappearance of the disabled body in public deliberations over reproductive and genetic politics that use disability to frame arguments about which bodies are worthy of protection, how and why we limit reproductive choices, and what reasons women may use to terminate their pregnancies. The disability critique of prenatal testing and selective abortion finds itself in productive tension with reproductive rights politics, which increasingly features disability in both pro-life and pro-choice messages. The uneasy alliance between disability and pro-life interests has profound implications for both disability legal scholarship and the sociolegal inquiry into the role of rights articulation – and rejection – by social movements.

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Citation

Heyer, K. (2018), "Prenatal Testing and Disability Rights: Challenging “Genetic Genocide”", Sarat, A. (Ed.) Studies in Law, Politics, and Society (Studies in Law, Politics, and Society, Vol. 76), Emerald Publishing Limited, pp. 101-129. https://doi.org/10.1108/S1059-433720180000076006

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Emerald Publishing Limited

Copyright © 2018 Emerald Publishing Limited


Introduction: “My Brother is a Blessing”

My moral opposition to prenatal testing and selective abortion flows from the conviction that life with disability is worthwhile and the belief that a just society must appreciate and nurture the lives of all people, whatever the endowments they receive in the natural lottery. (Asch, 2000)

My Brother is a Blessing: he has Down Syndrome. (Billboard by Prolife Across America, 2014)

This paper examines the political and legal impact of the disability rights critique of prenatal testing and selective abortion as outlined by disability scholar Adrienne Asch’s well-cited quote above. Asch points to a central but often unacknowledged issue in contemporary reproductive rights politics: the purpose behind prenatal testing is not only to give women and their families access to genetic information and family planning choices, but also contains central assumptions about the meaning of disability. Her claim that “life with a disability is worth living” is an open defiance to the unspoken assumption that a fetus diagnosed with a disability is better off not being born in the first place, and that abortion on the basis of disability is solid and uncontested public policy. At the same time, Asch frames her critique as a pro-choice feminist and thus posits her opposition as moral, rather than as a political or strategic.

Asch’s disability rights critique also stands in direct contrast to the apparent disability positive messages (“my brother is a blessing”) by anti-abortion activists, such as the one outlined in a billboard in a 2014 campaign by Prolife Across America. This nationwide campaign featured billboards depicting a smiling white boy cradling a white infant and offered a telephone number for “facts and counseling” for pregnant women. The tension between these two messages – one challenging assumptions that disability is an uncontested reason for abortion, and the other challenging the very same assumption to make the point that there can never be a legitimate reason to terminate a pregnancy – has profound implications for the role of disability in both pro-choice and pro-life abortion politics.

This tension between the disability rights critique of prenatal testing and reproductive rights has profound implications on the development of genetic policy and abortion rights. The disability rights critique – that prenatal screening and selective abortion of conditions associated with a disability constitute a form of “genetic genocide” – is increasingly influential in contemporary reproductive rights politics. Pro-life movements are drawing on the disability critique to refocus attention to reason-based abortion restrictions, posing that a disability should no longer considered to be a legitimate reason to abort a fetus. Similarly, pro-choice movements emphasize disability as the ultimate reason women need to have access to abortions, especially for politically contested late-term abortions. The rhetorical use of disability in reproductive politics has profound consequences for disability rights scholarship and activism. How does a movement based on a progressive politics articulate its opposition to central arguments underlying reproductive rights politics? What does it mean for a rights-based political movement to distance itself from an equally rights-based reproductive rights movement? As I have argued elsewhere, the disability rights movement is based on the articulation and extension of a civil rights model that focuses on autonomy, independence, and equal treatment (Heyer, 2015). The disability critique of life-and-death rights challenges progressive assumptions behind notions of autonomy and choice as inherently based on able-bodied norms and reflecting a history of “eugenic genocide.”

My argument proceeds in three parts. First, I will outline the disability rights critique of prenatal testing and selective abortion and place it in tension with the reproductive rights argument. Two types of arguments emerge: an “expressivist objection” to the meaning of disability as a life not worth living, and a challenge to the “autonomy” and “choice”-based argument for reproductive rights. The disability critique questions the degree to which women are able to make true choices for or against disability during genetic counseling, when the default response to a disability diagnosis is termination. The second part of the paper places this disability challenge into the contemporary reproductive rights setting that is witnessing unprecedented limits on abortion access. At the same time, new prenatal screening and testing technologies are dramatically increasing the number of women receiving information about their fetuses and confronting them with profoundly difficult choices about what do with the information they receive. These events have mobilized the disability community, specifically the Down Syndrome community, to counteract the disability bias in prenatal testing and demand new guidelines for genetic counseling. As an example of this mobilization the paper considers the passage of “Down Syndrome Information Acts” both in state legislatures and in Congress. The paper’s third and final section places the tension between disability rights and reproductive rights in the contemporary context of abortion-restrictive legislation that limits women’s reproductive choices in ways that echo the disability critique. This section examines the ways both reproductive rights and anti-abortion advocates use disability in their political struggles and suggests that this re-appearance of disability in political discourse offers important opportunities for the disability rights community to present a disability rights critique that affirms reproductive rights while still challenging public perceptions of disability and resisting threats to health care, women’s reproductive rights, and social justice.

The Disability Critique of Prenatal Testing: Expressivist Objections

Two central arguments animate the disability rights critique of prenatal testing and selective abortion. The first is an “expressivist objection” to the disabling messages sent by these policies. The expressivist argument claims that prenatal tests used to select against disabling traits express a hurtful attitude about, and send a hurtful message to the people who live with those traits. In that sense, prenatal testing and selective abortion is a way of reinforcing a medicalized model of disability by focusing on the individual impairment as a problem that needs to be eliminated – in this case by preventing the fetus from being born in the first place. Opposition to a medical model of disability has become a cornerstone of disability activism across the globe, which instead embraces a social model that points to the elimination of social barriers, discrimination and negative stereotypes as a way to address disability. Prenatal testing thus reflects an individualized model that once again points to the elimination of disabling traits as the focus disability policy. As disability activist Deborah Kaplan (2003) explains:

If persons with disabilities are perceived as individuals who encounter insurmountable difficulties in life and who place a burden on society, prenatal testing may be regarded as a logical response. However, if persons with disabilities are regarded as a definable social group who have faced great oppression and stigmatization, then prenatal screening may be regarded as yet another form of social abuse.

Another aspect of the expressivist objection focuses on what Asch and Wasserman (2005) have called synechdocal thinking – taking single trait to represent the whole. This critique suggests that parents who select against a fetus because of a predicted disability are making what is often a misinformed decision that a child with a disability will not be what they seek and will not be a child that enrich their lives. Prenatal testing for a condition such as Down Syndrome, for example, encourages a view of a fetus that focuses only on a single aspect of that fetus’ character – the additional copy of chromosome 21 – and ignores any other relevant aspects of who that fetus could become in the future. The reliance on this generalization is seen as morally problematic, even though Asch and others remain firmly pro-choice in their approach to abortion. They distinguish between their support for abortion rights in general and individual deliberations over a specific case, arguing that abortion of “any” child should be a woman’s right, whereas aborting “this” (disabled) child should not (Parens & Asch, 2000). As Asch (1999) explains,

When physicians, public health experts, and bioethicists promote prenatal diagnosis to prevent future disability, they let disability become the only relevant characteristic and suggest that it is such a problematic characteristic that people eagerly awaiting a new baby should terminate the pregnancy and “try again” for a healthy child. Professionals fail to recognize that along with whatever impairment may be diagnosed come all the characteristics of any other future child. The health professions suggest that once a prospective parent knows of the likely disability of a future child, there is nothing else to know or imagine about who the child might become: disability subverts parental dreams. (p. 1652)

The expressivist objection captures central messages about life with a disability as not worth living and questions automatic assumptions that parenting a child with a disability is necessarily a burden that subverts parental dreams. It emerges from a larger anxiety toward genetic policy within the disability community that points to the eugenic history of much of reproductive policy (Hubbard, 1997). While genetic research offers powerful solutions and medical treatments for many impairments, many disability scholars follow progress in this area with great trepidation. For example, Paul Miller and Rebecca Levine (2012) suggest that:

[…] the promise of genetic research is often described as the elimination of disabilities that occur naturally within the population. This leads disabled people to view the genetics revolution as one designed to prevent the birth of people like them. (p. 95)

In that sense, Miller and others see genetic research signaling a return to “genetic genocide” that is based on a long and painful history of eugenic policy. People with disabilities thus see the genetic revolution as one designed to prevent the birth of people like themselves. Although modern science has moved away from the pseudoscience of the American eugenic movements of the late 19th and early 20th century, genetic research is still fueled by misperceptions of disability as a trait that must be bred out of existence. The fact that life with a disability can be rich and fulfilling is often lost in the excitement of genetic discovery.

The disability critique thus emerges from long and painful history of eugenic policies that Paul Miller posits as a form of “historical trauma” we should consider alongside other historical traumas, such as slavery, colonialism, or the holocaust. The difference is that eugenic policies are based on “inherent biases and misrepresentations in part from within the medical and scientific communities, about life with a disability” (Miller & Levine, 2013, p. 96). Thus, “rather than guns or gas chambers, the weapon of destruction is misguided scientific policy for the sake of the ‘betterment of the whole.’”(Miller & Levine, 2012). Disability historians have done important work tracing this misguided policy in the development of the eugenics movement in the United States, which led to the institutionalization of persons with mental and physical disabilities (Nielsen, 2012), compulsory sterilization laws (Lombardo, 2008), and the development of immigration policy designed to exclude the “morally, mentally and physically defective” (Baynton, 2005). Nothing, however, exemplifies this disability bias and misguided ideas of social progress as well as the Supreme Court’s now infamous opinion in Buck v. Bell (1927) 1 . Oliver Wendell Holmes declared the social good of eliminating an entire class of persons by removing their ability to have children, because this “degenerate offspring” would invariably be executed for committing crimes, or “starve for their imbecility” – thus concluding that, “three generations of imbeciles are enough.”

While the eugenic reasoning in Buck v. Bell has been widely discredited (and compulsory sterilization laws overturned in Skinner v. Oklahoma 2 ), contemporary disability scholarship continues to document the persistence of eugenic thinking in modern medicine and health policy (Shakespeare, 1998). For example, the development of the contemporary abortion movement in the United States was deeply impacted by the rubella epidemic during the 1960s that occurred simultaneously with the Thalidomide scandal and right after the polio epidemic. Public images of disabled children, portrayed as tragedies and burdens on their families, generated new support for abortion reform (Hubbard, 1997; Reagan, 2010). Therapeutic abortion was framed as the only choice for women exposed to Rubella during pregnancy and thus paved the way for a new discourse on legalized abortion. Such linkages between medical epidemics and support for reproductive rights are also evident in contemporary responses to the Zika virus, which has Latin American countries reconsidering strict abortion laws and even the Catholic church hinting at relaxing standards on contraceptives (New York Times, February 2016).

Framed as an unimpeachable reason to terminate a pregnancy, disability is deeply linked to the articulation of reproductive rights. The disability rights critique calls attention to the ways progressive articulations of choice and autonomy reinforce negative assumptions and stereotypes of disability. The resulting tension between disability and progressive interests is evident in larger life-and death issues, most prominently in the disability critique of assisted suicide and death with dignity movements (Bagenstos, 2006). Here the disability movement broke rank with fellow progressives and publically opposed the right to die as inimical to the basic articulation of disability rights. Similar to the reproductive rights case, the disability rejection of a right to die argues that the “choice” over one’s right to die is never truly free and autonomous, but always informed by biases over the quality of life experienced by people with disabilities (Heyer, 2011). The disability movement is less proscriptive in the case of prenatal testing and selective abortion and maintains a strong pro-choice public stance. And yet, the tension between disability rights and reproductive rights has both ideological and political consequences.

The Tension Between Disability Rights and Reproductive Rights

The reproductive rights movement emphasizes the right to have an abortion; the disability rights movement emphasizes the right not to have to have an abortion. Disability rights advocates believe […] that all women have the right to resist pressure to abort when the fetus is identified as potentially having a disability. (Saxton, 2006, p. 105)

Marsha Saxton summarizes the key tension between the reproductive rights movement and the disability rights movement regarding reproductive freedom as the difference between a right to have an abortion and the right not to have an abortion. The disability critique articulated by Saxton, Asch, and others has always been grounded in a pro-choice dedication of women’s reproductive rights. And yet, their moral objection to selective abortion – as opposed to their general support for abortion rights per se reveals a central tension between the two positions. How can a general support of abortion rights include an exemption for an entire class of fetuses with disabilities? How can disability scholars sustain distinctions between any fetus, which could be aborted, and a particular fetus with a disability, which shouldn’t? This distinction hinges on a disconnect between a rhetoric of choice and a political commitment to the lives of people with disabilities.

Thus, while reproductive rights arguments focus on the autonomy of women’s choices, Saxton’s disability critique focuses on a personification of the fetus: “When we refer to the fetus as a disabled (rather than defective) fetus, we personify the fetus via a term of pride in the disability community” (Saxton, 2006, p. 110). She acknowledges that this identification places her at odds with fellow pro-choice feminists who traditionally resist personification of the fetus and fight fetal personhood laws:

The connection disabled people feel with the ‘disabled fetus’ may seem to be in conflict with the pro-choice stance that the fetus is only part of the woman’s body, with no independent human status. (Saxton, 2006).

The expressivist objection thus places disability activist in a central bind that cannot be addressed by legislative reforms or policy change as the autonomy-based objection. Saxton summarizes her recognition of this bind as follows:

As feminists, we are pro-choice, because women have to have control over our bodies. At the same time, we grapple with a ridiculous hypothetical: Had prenatal testing been available to my mother, I might not exist. We find ourselves confused by identifying with the fetus. (as quoted in Levine, 2015)

By grappling with the hypothetical and coming to terms with her own mortality, Saxton exemplifies what many consider to be an “irreconcilable difference” to the feminist pro-choice argument (Sharp & Earle, 2002).

The focus on of this difference is in the articulation of reason-based abortion restrictions that have become prominent in contemporary abortion politics. Making distinctions between ethically acceptable and unacceptable reasons for abortion violates the central premise of the autonomy and choice principles that underlie the legal basis of abortion rights in the first place: if women have a right to an abortion, then that right cannot be violated on the grounds that some people may find certain reasons for obtaining an abortion problematic.

And yet the choice argument tends to ignore the complexity of reproductive decision-making as women manage material realities, social support systems, family needs, and individual ethics in their decisions on whether or not to continue a pregnancy. For example, Alison Piepmeier’s research on women’s experiences with genetic testing and selective abortion challenges the assumption that women who terminate pregnancies of fetuses with genetic anomalies do so solely on the basis of disability bias (Piepmeier, 2013). Woman make decisions by balancing a complex array of needs and factors, including the kinds of emotional and material supports they can receive in carrying a disabled fetus to term. Thus, a decision to terminate a pregnancy on the basis of fetal disability might not necessarily be a result of synechdocal thinking as Asch suggests but rather a complex assessment of the additional time and resources necessary to raise a child with a disability. This decision-making is complicated in a political climate of increased cuts to state supports for families, coupled with increased abortion restrictions, and, as the next section explores, an increased pressure on pregnant women to test their fetuses for genetic anomalies.

The Disability Rights Critique: “Informed Choice”

The issue of choice thus becomes a central theme not only in reproductive rights discourse, but also in the disability critique of prenatal testing and selective abortion. Both arguments focus on women’s autonomous decision-making, but the disability critique questions the degree to which women faced with a diagnosis of fetal disability are truly able to exercise autonomous choices with regard to their options. How can women make informed choices about their disabled fetus when the default assumption is that they will terminate the pregnancy? The disability critique is an autonomy-based argument that does not seek to remove this autonomy in the case of selective abortion, but that reflects a concern with how and why women chose to obtain genetic information of their fetus, and what they do with the information once the test comes back as positive for a disability.

Disability scholarship has demonstrated the general bias against disability in the medical community, typically delivering a disability diagnosis as “bad news” that should automatically result in a decision to terminate the pregnancy (Parens & Asch, 2000; Rapp, 1999). Rather than framing genetic testing as a neutral quest for medical information about a fetus, this research suggests that genetic counselors view disability as predominantly negative for both children and families and will tend to advise parents to try again for a healthy child. Women on the receiving end of such counseling often see prenatal testing as a “Pandora’s Box” that empowers them with information but very little guidance of how to process the implications of that information (Dorgan, Williams, Parrott, & Harris, 2003). Rather than as a neutral quest for genetic information that is designed to reduce worries in pregnant women, prenatal testing often produces stress and anxiety, and many women undergo prenatal testing as part of routine prenatal care, without knowing that these tests are optional. Pregnant women thus become what Rapp (1999) has termed “ethics pioneers” navigating difficult choices about what to do with unprecedented levels of information about their fetus.

This negative view of disability stands in direct contrast to the ways people with disabilities rate the quality of their lives, which is no less positive or tragic than that of people without disabilities. Indeed, the medical community is not immune to a distorted view of disability that can be seen as a form of “blindsight”: they do not see people with disabilities as they see themselves (Bloom & Miller, 2011). Health professionals significantly underestimate the quality of life of persons with disabilities and overestimate the negative impact disability has on family members (Gill, 2000). As Silvers (1998) reminds us, “sighted people notoriously overestimate the disruptiveness of being blind because they can only speculate about it” (p. 53). Uncovering the effects of this blindsight in medicine and law has been a central project of important disability research on the impact of genetic policy that starts with the assumption that life with a disability is tragic, has less value, and should be prevented.

Disability scholarship on the disability bias inherent in prenatal testing, genetic counseling, and selective abortion posed a profound challenge to the medical community and resulted in extensive dialogue between disability scholars, medical ethicists, and genetic counselors. This dialogue resulted in the prominent Hastings Center Report, “Prenatal Testing and Disability Rights” under the leadership of Adrienne Asch and Erik Parens, which became important first step in challenging the medical community to examine both assumptions and practices about the role of disability in genetic counseling (Parens & Asch, 2000). It forced attention to central questions about the meaning of disability, assumptions surrounding the value of living life with a disability, and the general ignorance about the lived experience of disability within the medical community. It also prompted extensive research among medical ethicists examining the practice of genetic counseling and ways to address choices about disability.

One policy outcome from these dialogues has been the insistence on disability positive messages to balance out the “bad news” default. As I will show in the following section, the Down Syndrome community mobilized in this area to provide a lived experience perspective from parents of children with Down Syndrome. They argue that parents receiving a prenatal diagnosis of Down Syndrome should be entitled to receive genetic counseling that contains “balanced and unbiased” information about raising a child with Down Syndrome. The focus of this mobilizing has been policy change and legislative reform, such as the passage of “Down Syndrome Information Acts” both in state legislatures and in Congress that seek to correct against the anti-disability bias in genetic counseling.

It is this focus on policy change that distinguishes the choice-based disability critique from the expressivist critique. The autonomy and choice-based critique does not fundamentally challenge the basis of reproductive rights arguments as outlined in the expressivist critique but rather focuses on changing the way these choices are framed and exercised. The expressivist argument, in contrast, fully incorporates the fundamental tension between disability rights and reproductive rights and draws on a history of genetic genocide. While the choice and autonomy argument has provided the basis for legislative change, as I will show in the following, these legislative efforts have also inserted the disability rights argument into the contemporary context of conservative anti-abortion advocacy.

The Tension in Political Context: New Developments in Prenatal Testing and Screening

The disability rights critique of prenatal testing and selective abortion is especially critical in a contemporary political setting which sees unprecedented numbers of abortion restriction laws coupled with an equally unprecedented increase in prenatal testing technologies. The diminished access to abortion alongside the increased access to prenatal genetic testing sends “mixed messages” to both patients and doctors (Rebouché & Rothenberg, 2012). Pregnant women are in the position to receive more genetic information about their fetuses that force them to make reproductive choices in a setting where these choices are rapidly declining. Doctors, at the same time, are increasingly expected to perform more detailed prenatal testing while also being restricted about the kinds of counseling they can or must provide.

Two fundamental developments in prenatal testing technologies underscore the importance of this critique. The first occurred in 2007 when the American College of Obstetrics and Gynecology (ACOG) released new guidelines recommending that all pregnant women, not just women over the age of 35, be offered prenatal “fetal chromosomal screening,” and thus drastically expanding the number of women with access to screening. The ACOG recommendations suggest that women want screening for “peace of mind” and that their decisions regarding testing are based on many factors, such as:

[…] a family or personal history of birth defects, the risk that the fetus will have a chromosomal abnormality or an inherited condition, the consequences of having an affected child, the risk of pregnancy loss from an invasive procedure, and the options for earlier termination (ACOG, 2007).

Phrased in medical and neutral language these recommendations were presented as an impartial listing of options available to women, only one of which include terminating their pregnancies. The disability community, however, immediately criticized these as prejudicial to individuals born with congenital disabilities. For example, the National Down Syndrome Congress, one of the nation’s two large Down Syndrome advocacy organizations, condemned the ACOG testing guidelines for “convey[ing] tacit approval for terminating pregnancies where the fetus has Down syndrome” (NDSC, 2007). Down Syndrome is one of the most common congenital abnormality and the most widely tested genetic condition. There is a strong sense that Down Syndrome is being singled out for what conservative commentator George Will (2007) has called a “search and destroy mission.” Will, whose son has Down Syndrome, sees the recommendations as little more than an encouragement, “in a clinically neutral way” for parents to “choose to reject people like [his son] Jon as unworthy of life.”

The recommendations to expand prenatal testing for women under 35 were soon followed by the development of non-invasive methods of prenatal screening (NIPS). In 2011 a San Diego biotech company launched a new NIPS for Down Syndrome and other conditions with an extra chromosome. This method developed new technologies that could analyze fetal DNA present in the pregnant woman’s blood, and thus promised to reduce the need for invasive testing such as amniocentesis or chorionic villus sampling (CVS), both of which remove fetal cells from either the amniotic fluid or the placental tissue and thus carry a risk of miscarriage. NIPS promise very high detection rates and very low false negatives based only on a test of the mother’s blood. They can also be performed as early as the 10th week of gestation, with results returned as early as the 11th week, which is about the same schedule as a CVS, but without the use of a needle. Initially developed as a diagnostic, these tests are still only able to screen; only a first trimester CVS or a second trimester amniocentesis can accurately diagnose a fetal disorder; thus women receiving positive NIPS results should be offered diagnostic testing.

The fact that these are screening mechanisms, and not prenatal tests, has been of particular concern to the Down Syndrome Community. The concern is that women will use results as diagnostics without realizing that they will need additional testing and that they will not receive adequate information about Down Syndrome from their doctors as part of this screening (NDSS Position Paper 2012). Moreover, NIPS are not yet regulated by the Food and Drug Administration, and are only covered by health insurance to women considered at high risk for genetic abnormalities. This has advocates suggesting that having children with Down Syndrome may become the “province of the rich” if prenatal screening becomes universal and insurance companies cease to cover the medical and educational costs for raising them (Harmon, 2005). In a well-cited interview in the New York Times, disability scholar Michael Bérubé, who has written extensively about raising a son with Down Syndrome, argues that:

[…] the more people who think the condition is grounds for termination of a pregnancy, the more likely it will be that you’ll wind up with a society that doesn’t welcome those people once they’re here. It turns into a vicious cycle. (as quoted in Harmon, 2005)

The emergence of new testing technologies impacts both the expressivist and the choice-based disability critiques. First is the argument that genetic screening techniques threaten the very existence of people with disabilities by pruning away physical and intellectual difference from the genetic code. Placed in the context of disability rights activism that has struggled to expand acceptance of disability difference, this pruning away of disability traits appears as a step backwards. “It is ironic,” argues Saxton (2006), “that just when disabled citizens have achieved so much, the new reproductive and genetic technologies are promising to eliminate births of disabled children” (p. 105). She points to “commonsense assumptions” that screening techniques are designed to reduce the incidence of disease and disability and thus improve the quality of life (Saxton, 2006).

In that light, Saxton’s demand for the right not to have an abortion seriously questions the distributions of resources toward testing technologies and not toward the kinds of resources that improve the lives of people with disabilities who are already born. At issue with the disability critique thus is not only the individual choice toward aborting or not aborting a fetus with a disability, but the collective choice to prioritize the funding needs of a genetic revolution over those of people living with the very conditions the revolution seeks to eradicate (Rapp, 1999). Moreover, the expansion of these technologies to younger women sets a new norm that prenatal testing is not only a universal but also a personal responsibility to prune the human gene pool from genetic defects. The very existence of prenatal testing technologies provides an imperative to use them and then act on the result.

Disability Mobilization: Down Syndrome Information Acts and the PPDCAA

Disability organizations took the 2007 recommendations to expand prenatal testing for Down Syndrome as an impetus to intensify their legislative lobbying for reforms in genetic testing and counseling. The National Down Syndrome Society’s policy center was implemental in these efforts, leading to the passage of the 2008 “Prenatally and Postnatally Diagnosed Conditions Awareness Act” (PPDCAA). 3 Congress passed the law with broad bipartisan support, declaring its purpose as the provision of “up-to-date, evidence-based information about the conditions subject to prenatal and early postnatal diagnosis.” The focus of this information was to counteract the typical “bad news” information given to pregnant women receiving a positive diagnosis and instead present practical information on what life would be like for their child that is based on the lived experience of disability by both people living with the condition and family members. Parents would be given referrals to local and national networks for peer support and outreach. The Act also sets up a national registry of families interested in adopting newborns with Down Syndrome and other conditions.

The congressional hearings prominently featured the work of Brian Skotko, a physician and prominent advocate for the Down Syndrome Community. Skotko’s research on women’s experiences receiving a diagnosis that their child had Down Syndrome confirmed the necessity for reforms in the ways the diagnosis was delivered and in the accuracy of the information given (Skotko, 2005). Skotko reports that women are commonly told their children would never be able to live independently, have severe cognitive and health impairments, and, in general, receive inaccurate and outdated information about living life with Down Syndrome by physicians who had very little practical knowledge about the lived experience of a disability. Some clinics still distributed pamphlets using the outdated term, mongoloid. For example, Congressional testimony during the PPDCAA featured a woman recounting the information she received after giving birth to her daughter:

We were told that she probably would not walk until she was 3 or 4. She walked at 13 months. We were told she may not start talking until 2 years or later. Her first word was Banana at the age of 9 months (and she hasn’t stopped talking since). (Leach, 2016, pp. 87–88)

The woman’s daughter, now 20 years old, testified next:

I attend St. Croix Preparatory Academy and I am currently in their transitions program. I am a TA in lower school. I love to golf and do gymnastics. I love to paint. (Leach, 2016)

Such testimony issued powerful reminders about outdated assumptions about Down Syndrome that captured a bipartisan imagination. To ensure passage of the law, however, compromises were made that effectively de-funded the law. The initial bill had included a funding provision of $5 million for each of 5 years. The compromise bill removed the mandatory language and instead merely authorized the Secretary of Health & Human Services to provide grants for the development of patient education resources. The bill passed the Senate by unanimous consent on September 23, 2008, and passed the House by a voice vote on September 25, 2008 (Leach, 2016, p. 85).

Despite the bipartisan support for the PPDCAA, however, abortion politics became a central part of this law’s passage. Also known as the Kennedy-Brownback Act after its co-sponsoring Senators, the law represents a new alliance between pro-disability and pro-life interests. Kansas Republican Senator Brownback had originally envisioned the law as an anti-abortion measure and sponsored the law as part of his larger legislative agenda restricting abortion rights. For example, at the same time that Brownback was championing PPDCAA he also introduced the “Ultrasound Informed Consent Act” that would require physicians to show ultrasound images to a woman prior to terminating a pregnancy. These laws have now become common in state legislatures. It was the co-sponsorship by Democratic Senator Edward Kennedy that prevented the inclusion of anti-choice language into the law and directed its focus on the presentation of disability information and support for families.

Nonetheless, House Republicans framed their support of the law as an anti-abortion measure. Rather than focusing on the importance of fair and unbiased information about Down Syndrome, the Republican leadership has stressed the importance of adoption services, and to reduce the frequency with which women who learn that they are carrying a fetus with Down Syndrome will terminate their pregnancy. The House Republican Conference website introduces the law with an often-cited (but not well documented) statistic that “currently, 90% of children diagnosed with Down Syndrome are aborted” (Reilly, 2009).

The Kennedy–Brownback Act was widely praised by both disability rights and pro-choice organizations as well, but clearly for different reasons. The Disability Rights Education and Defense Fund, along with the World Institute on Disability and, importantly, the National Women’s Health Network and the Reproductive Rights Technologies Project, issued a joint press release praising the law for:

[…] providing accurate, balanced information about both the positive and negative aspects of disability [that] may expand peoples view of disability and of the potential for people with disabilities to participate in and contribute to society. (Reilly, 2009)

The press release confirms that disability advocacy groups and reproductive rights organizations “share an interest in receiving unbiased, nondirective information about prenatal genetic conditions,” and that “by providing more comprehensive information and resources, the PPDCAA may effectively expands women’s reproductive options.” Adrienne Asch and David Wasserman also praised the law as a “promising start” and the “first stage in restructuring the prenatal testing process” in an op-ed of the AMA Journal of Ethics (2011).

The fact that both disability and pro-choice activists can celebrate a law along with pro-life conservatives is indicative of the larger issue this article investigates. While the law’s stated purpose addresses central issues the disability rights community has been asking for – allowing for reproductive choices to be more informed by offering positive information about Down Syndrome – the question of termination remains fundamental to reproductive choice. Ultimately, women must be able to make a choice to terminate their pregnancies and not give birth to children with Down Syndrome, regardless of the disability-positive information they may receive from their doctors. In the question of implementing the PPDCAA, however, the inclusion of information about abortion as part of that counseling has become divisive.

It is in the state legislatures that the question of balanced prenatal information and the role of abortion counseling is being contested. While waiting for Congress to take action on the PPDCAA, Massachusetts in 2012 became the first state to pass a “Down Syndrome Information Act,” requiring health care providers deliver with each test result for Down Syndrome educational materials and referral to the patient’s local parent support organization. 4 The Massachusetts law was prompted by the development of noninvasive testing in 2011 and is widely considered a model statute for its broad mandate to provide “up-to-date, evidence-based, written information about Down syndrome that has been reviewed by medical experts and national Down syndrome organizations” (Bill H.3825). The written information given to parents and families must include not only medical information, such as physical, developmental, educational, and psychosocial outcomes, and life expectancy, but also connections to local and national Down Syndrome advocacy organizations. Other states quickly followed with their own versions of the law. 5

Only Massachusetts decided to fund the implementation of the law and distributed the only materials that meet the law’s requirements for being accurate, medically reviewed, and reviewed by Down Syndrome organizations: the “Lettercase” pamphlet, “Understanding a Down Syndrome Diagnosis” (www.lettercase.org). This pamphlet was produced by the National Center for Prenatal & Postnatal Down Syndrome Resources, which is the only one that has been approved by the National Society of Genetic Counselors as a resource that patients should receive with a test result. Most importantly, it follows the ACOG 2007 guidelines by mandating that termination of a pregnancy must be one of the options discussed once women have received information about Down Syndrome.

While the Lettercase pamphlet and the accompanying Down Syndrome Information laws are clearly not focused on abortion, they have become entangled with state-level anti-abortion politics that increasingly relies on disability in widening restrictions to abortion access. For example, while Massachusetts, Delaware, and Kentucky had Down Syndrome Organizations introduce Down Syndrome Information Acts, in Indiana and Louisiana it was pro-life organizations. In both of these cases, the laws added a final paragraph which prohibits that the information provided to pregnant women include reference to abortion as an option. In Indiana, the anti-abortion organization (“Indiana Right to Life”) that introduced the Down Syndrome Information Act also introduced a concurrent bill that specifically banned selective abortion for fetuses with Down Syndrome. This has prompted disability rights activists to criticize the Louisiana law for driving a “wedge” between disability rights advocates who are pro-choice and those who are pro-life (Perry, 2015a).

Moreover, the removal of the termination option from informational materials given to pregnant women has had the effect that medical professionals now refuse to hand them out in the first place because they violate medical guidelines and subject physicians to liability risks. This has subverted the very purpose of the law – presenting women with accurate information on Down Syndrome – and, once, again, women are receiving prenatal testing without receiving the information the disability rights community has fought so hard for. This has compelled one of the authors of the Lettercase pamphlet to warn the Down Syndrome Community that “the medical community is already suspicious of efforts by Down syndrome advocates as being Trojan Horses for pro-life information” (Leach, 2015). The Indiana law, he argues, is corrupting the important efforts of the Down Syndrome Community to bring accurate information to pregnant women by preventing women to receive this information in the first place because medical professionals will not give it to them. This uneasy alliance between disability and pro-life interests in the area of prenatal testing and genetic counseling is also reflected in the growth of reason-based abortion restrictions that are adding disability as a prohibited motivation.

Reason-Based Abortion Restrictions: Down Syndrome and Sex-Selection Abortion Bans

Two states currently have disability-based abortion bans: North Dakota (2013) and Indiana (2016). 6 These ban abortions solely for reasons of sex, race, physical or mental disability, including Down Syndrome. A physician who performs an abortion could face disciplinary actions or civil liability for wrongful death if he or she knows the procedure is being done in violation of gender or fetal disability restrictions. In Indiana, the bill also places restrictions on the handling of fetal tissue and requires remains of aborted and miscarried fetuses to be interred or cremated. The law is widely celebrated by conservative advocacy groups spearheaded by the Americans United for Life that has designed it as part of a larger legislative package of abortion restrictions termed the “Infants’ Protection Project.” 7

These laws are part of a growing trend in abortion restrictions based on women’s motives or reasons; the most common of which are those that ban abortions on the basis of fetal sex and race. Both the North Dakota and Indiana bans drew special attention for signaling out disability as a reason not to abort, especially in light of traditional legislative approaches to abortion that have always reserved fetal impairment as a legitimate, if not highly recommended, reason to terminate a pregnancy. And yet, the actual enforcement of the law’s disability prohibition is questionable: women whose fetuses are diagnosed with disabilities may still seek to terminate their pregnancies, as long as they do not inform their healthcare providers that this was their reason for doing so. Thus, as a matter of principle, the law cannot stop a woman from obtaining a pre-viability abortion or require her to give a reason for doing so.

Reason-based abortion bans signify a new approach to abortion restrictive legislation that proliferated in state legislatures after the 2010 election that ushered a record number of Republicans governors and legislators. This election is widely considered a “sea change” for abortion law, as states passed record numbers of laws restricting abortion access (Guttmacher Institute, 2012). Most of them were in the form of TRAP laws (targeted restrictions on abortion providers) that demand hospital admitting privileges for physicians and require clinics to meet the physical and staffing requirements of surgery centers. Other legislative restrictions included 20-week abortion bans, based on the medically disputed theory that a fetus feels pain at that point of gestation, as well as bans on the most common method of second-trimester abortions that use a form of dilation and evacuation. States have also instituted mandatory waiting periods that cause hardships for women who must travel to reach a clinic. Finally, there are a host of communication requirements that mandate physicians to show their patients pictures and renderings of fetuses, require them to tell their patients that fetuses might feel pain after a certain point in gestation, or force them to view their fetus before performing an abortion.

The inclusion of disability in these larger legislative efforts to restrict abortion rights introduces a fundamentally different challenge to both disability and pro-choice activists. Abortion bans on the basis of disability are different in that they focus solely on women’s motivations for an abortion rather than limiting access to facilities or mandating communications. While access and communication laws are justified as measures to protect women’s health, the disability bans portend to combat disability discrimination. 8 They take their cue from abortion bans on the basis of fetal sex, which were justified by the anti-abortion movement as a measure to combat sex discrimination. 9

These bans against sex selection speak of a problem of “gendercide” in the United States by directly targeting Asian American communities assumed preference for male children. (Pro-Life Future, 2016) And yet, these bans are addressing a social problem that does not exist – and in fact contributes to poor health outcomes to Asian American women. In that sense bans against sex selection are generally seen as ways to perpetuate discrimination, rather than prevent it (Kalantry, 2014). Because they ask physicians to scrutinize women’s reproductive choices, and because it is difficult to determine the true reason a woman has chosen to terminate her pregnancy,

[…] medical professionals may err on the side of caution and deny care to women in order to avoid liability under the law, even when a woman is not seeking a sex-selective abortion. (Kalantry, 2014)

Nonetheless, by using the language of gender equality and appealing to the civil rights of vulnerable groups, pro-life advocates sought to pose an argument against abortion that they felt was ethically and politically unimpeachable. How can pro-choice activists support the abortion of a fetus just because of its sex?

How can they, who so oppose patriarchy and discrimination on the basis of sex, consent to the ultimate form of patriarchy and discrimination, namely, the elimination of baby girls solely on account of their sex? (Mosher, 2007)

By publically exposing the types of motivations that lead women to make reproductive choices, and by determining which motivations are acceptable, the anti-abortion movement set the stage for a new frontier in abortion politics: challenging the widely acceptable choice of terminating a pregnancy on the basis of fetal disability.

While the stated reasoning behind the disability ban is a concern for disability rights, as I will show below, an important difference to the sex-selection ban is the question of implementation. While neither ban can compel women to state their reason for a pre-viability abortion, the disability reason is not only more common and expected, but it is also likely to follow genetic testing. Thus, there is a record of a woman’s knowledge of a positive prenatal diagnosis and a discussion with her doctor about her options. Once a physician becomes aware of her reasons, then, he or she would be legally required to refuse the abortion. In comparison, women electing sex-selective abortions – besides being far less common – have the opportunity to conceal their reasons and thus avoid the abortion ban on fetal sex.

As a new frontier in the anti-abortion message, disability has the power to shift the conversation towards women’s motivations and to generate the appearance of political alliances between pro-life and pro-disability interests. Pro-life campaign materials increasingly use images of smiling children with Down Syndrome to re-inforce their message that “every child deserves to live” (www.lifenews.com). The use of pro-disability discourse, anti-discrimination terminology, and the framing of disability selective abortion as a form of eugenics not only echoes fundamental critiques by disability activists but also engages pro-choice messages.

The Use of Disability in Pro-Life and Pro-Choice Politics

One example of this engagement is around the question of late-term abortion. Both pro-choice and anti-abortion messages powerfully engage disability in their campaigns to promote or defeat the restrictive abortion laws. Anti-abortion activists draw political alignments between pro-disability and pro-life messages. The reproductive rights community, in contrast, has used disability as a legitimate reason to resist restrictive abortion laws. Especially in the political struggle around late-term abortion, reproductive rights activists have portrayed disability as a tragic state that justifies abortion even for wanted pregnancies.

For example, in 2010 Nebraska passed a late-term abortion law, which banned abortion after 20 weeks on the basis of the fetal pain theory (the “Pain Capable Unborn Child Protection Act” LB 1103). The primary strategy of pro-choice activists involved in this struggle was to raise the issue of prenatal diagnosis of congenital disabilities as a rationale for protecting access to abortion in the third trimester. They sought to personalize difficult late-term abortion decisions by telling stories of women struggling with the “excruciating choice” to terminate a wanted pregnancy. For example, they publicized the story of Dana Weinstein in Mother Jones magazine to personalize this difficult decision. The article explains that:

Weinstein was faced with the prospect of giving birth to a baby that was expected to suffer from nearly constant seizures, could have required feeding tubes to stay alive, and could have been in a vegetative state, if it survived at all. She decided to end the pregnancy rather than continuing for another two months and prolonging the suffering. (Sheppard, 2011)

The article stresses the difficulty in this decision not only because this was a wanted pregnancy (“we wanted her and we loved her”) but also because it was tremendously difficult and expensive to have to travel out of state to receive a late-term abortion and then have her insurance cover the $17,000 in medical bills (Sheppard, 2011).

Another well-publicized late-term abortion story was published as part of a media fact sheet by the pro-choice organization NARAL. It features facts and legislative histories of late-term abortion legislation and illustrates them with personal stories like the one of Danielle Deaver. When her water breaks at 22 weeks and doctors could not find ways to save the pregnancy she decided to terminate and asked the doctor if she could help them “put an end to this nightmare” (NARAL, 2016). The doctor refused in accordance with the Nebraska ban, which had been in effect for just two months. As a result,

[…] the Deavers had no recourse to avert the pain and suffering that was to follow. Eight days later, after Danielle endured intense pain and infection, their daughter Elizabeth was born and survived for just 15 minutes. (NARAL, 2016)

The focus of this coverage was twofold. First was an emphasis on the effect of “forcing women to give birth to disabled children against their will” (National Journal, 2013). In the context of protecting women’s abortion rights, especially when it comes to terminating a wanted pregnancy, then, disability was framed as a “tragedy” and a “defect.” Forcing women to give birth to a child with a disability would ruin families, both financially and emotionally, and cause tremendous pain and suffering to both mother and child (Jesudason & Epstein, 2011). The second focus was on the costs of raising a child with a disability. Pro-choice rights activists would frequently cite studies showing the costs of raising a disabled child – including out-of-pocket costs and the indirect impact on the family’s earning potential – can run as much as $30,500 a year. They point to the fact that right on the heel of abortion restrictions, Congress voted to slash $40 billion dollars over the next decade from the food stamp program, half of whose recipients are children (Rosenbaum et al., 2013). A more effective way of encouraging parents in North Dakota and other states to continue pregnancies and give birth to children with disabilities would be to provide more public funding for the care of these children: something the disability rights movement has been demanding for years (Jarman, M. 2015).

In direct contrast to the pro-choice framing of disability as an unimpeachable reason to protect women’s ability to choose abortions, anti-abortion advocates used empowering and positive language to describe the joys of parenting children with disabilities. For example, the anti-abortion site Abortion73.com states that:

[..] abortion advocates argue for the right to abort children who might grow up with a disability, as if disease or handicap somehow strips a person of their right to live and relegates them to a life of misery. Such a suggestion is barbaric and inhumane and has no place in a just society. There are children of all ages, and adults, too, who are alive today and are living through all manners of disease and disability. Do these physical limitations make them less human? (Abort73)

The National Right to Life Committee uses similar language. It has issued a talking points manual that coaches anti-abortion activists how to respond specifically to challenges that disability is a legitimate reason for terminating a pregnancy. The manual suggests the argument that:

[…] aborting a child with a disability or illness is the height of prejudice. When a family learns that the child they are expecting may have a special need, that family needs support and good solid medical information – not the death of their most fragile member. Society must flee this attitude that uses arbitrary yardsticks to measure people’s worth. (National Right to Life Committee, 2014)

Anti-abortion activists have skillfully used disability empowering language in framing their opposition to abortion. They embrace disability as positive and enriching to counteract the pro-choice movement’s use of disability as a legitimate reason why women may choose to terminate a wanted pregnancy. Right to life advocates also like to point to the eugenic roots of Planned Parenthood (“Margaret Sanger’s Eugenic Legacy”) to make the claim that contemporary abortion policy continues the quest to “limit and discourage the overfertility of the mentally and physically defective” (Franks, 2005).

This growing alliance between disability and pro-life interests has powerful political implications for the disability movement and for the framing of disability rights as a progressive extension of the civil rights frame. The contemporary debate on selective abortion places disability rights activists, which predominantly identify as a progressive political movement, in the same camp as political conservatives who do not embrace civil rights heritage of the disability rights movement and who actively work to dismantle poverty-reduction measures. It is no secret that the support for disability within the anti-abortion community stops at birth: it neither recognizes nor promotes the kinds social expenditures necessary for women to actually raise and care for the children with disabilities that would be saved from abortion. The pro-choice side is much more closely allied with progressive political causes that meet all families’ needs; and yet it champions the right to terminate pregnancies precisely because they would lead to the birth of a child with a disability. Disability advocates now find themselves in a position where they must insert their critique of selective abortion within the pro-choice community while simultaneously hold the pro-life community accountable for oversimplifying the choice of abortion and disability.

Feminist Responses to the Use of Disability in Abortion Politics: Implications for Disability Scholarship

Feminist legal scholars, who have followed the trend of reduced abortion services and the increasing marginalization of abortion as medical care, have paid increasing attention to the intersection of prenatal testing and abortion politics. They warn that, “without careful consideration of how genetic prenatal testing and abortion intersect, policy debates may be co-opted by anti-abortion rhetoric, rather than focus on the implications for health care delivery” (Rebouché & Rothenberg, 2012, p. 986). Moreover, they suggest that as prenatal testing is evolving, states will inevitably seek to regulate genetic counselors and obstetricians as they do abortion providers with laws that, for example, would dictate ethics training, licensing, or facility standards in excess of normal requirements.

Reproductive rights activists are well aware of the complex challenges women face in deciding to keep or terminate a pregnancy, and they are paying attention to the importance of not sending “anti-disability” messages” (Jesudason & Epstein, 2011, p. 542). In fact, they argue that

[…] the shared progressive values of the pro-choice and disability rights communities should have no place for oversimplifying disability as tragic, pitiful, or inspiring; erasing the difficulties in obtaining abortion services; and discounting family support policy agendas and their critical importance in abortion debates. (Jesudason & Epstein, 2011)

In highlighting anti-abortion groups’ “false advocacy for people with disabilities,” pro-choice activist Erin Matson challenged feminists to “more robustly utilize a disability rights lens so anti-choicers can’t continue to monopolize the discourse” (Matson, 2014). She warned that:

If we in the pro-choice movement don’t start paying serious attention to the ways in which our own practices contribute to the dehumanization of people with disabilities, we can’t claim to operate under a reproductive justice framework at all. (Matson, 2014)

The reproductive rights community has recognized the impact of the political climate since the 2010 election on its own strategies defending abortion rights. It acknowledges that:

[…] unrelenting attacks on abortion rights sometimes result in pro-choice advocates choosing to use reactive messages that feature individual stories of difficult decisions in the face of fetal diagnosis rather than using family supportive and affirming messages. (NARAL, 2016)

The disability rights community, in contrast, is not a unified political movement and has not publically endorsed either pro-choice or pro-life positions in the abortion debate. And yet it has embraced what most activists would consider a progressive political tradition in its civil rights approach to disability equal rights, full inclusion, and nondiscrimination. Indeed, the articulation of disability as a civil rights issue, rather than as a medical problem and social welfare concern, relied heavily on the political and legal strategies of the civil rights movement and women’s movement of the 1960s. Prominent feminists within the disability rights movement, like Asch, Saxton, and others, have openly embraced the importance of women’s reproductive autonomy as a basis of much of the disability movements’ own concern with self-determination, while simultaneously affirming their commitment to disability pride and a public challenge to negative assumptions about the lived experience of disability.

The Articulation of Disability Rights: Implications for Sociolegal Scholarship

The disability critique of prenatal testing and selective abortion suggests new ways of thinking about the articulation of rights. Disability activists are challenging notions of choice and autonomy that frame the liberal discourse around reproductive rights. They point to social pressures to get prenatal testing and then using genetic information in socially responsible ways – often presented by medical professionals who do not have disabilities themselves – that effectively coerce people into making decisions that reflect disability bias. In that sense, the disability critique questions the freedom of choice in reproductive politics when the default choice is always against disability.

Disability activists have problematized liberal choice and autonomy discourse in end-of-life issues as well. Articulated as a progressive extension of bodily autonomy and control over one’s death, the right to die movement fought conservative and religious efforts to curtail the growth of death with dignity legislation in state legislatures. Disability activists broke rank with fellow progressives and opposed this right as a reflection of discriminatory attitudes that life with a disability is not worth living. By rejecting a right to die as a free and autonomous choice for people with disabilities, the disability community resisted social assumptions about being “better dead than disabled” (Heyer, 2011). Similar to the extreme vulnerability of parents making decisions about their fetus, then, people with disabilities are facing social and financial pressures to make responsible choices and not to be a burden to their families that would compromise the freedom of their choice to end their lives. Given that reality, regulation of this particular right is arguably not restrictive of free choice, but instead is necessary to preserve true freedom of choice. The movement thus publically opposed aid in dying legislation – something it has not done in the abortion rights case – as a way to protect the rights of a vulnerable population.

This paper has focused on a movement strategy – the rejection of rights that are typically framed as liberal extensions of privacy and autonomy rights – that stands in direct contrast to the rights-embracing history of disability activism in the United States. Focused on the acquisition of rights long denied to people with disabilities, the movement has followed a civil rights trajectory to address a history of exclusion and discrimination. And yet there are life-and-death issues – such as the right to control the nature and timing of one’s death, the right to make reproductive choices that include the selective abortion of fetuses with genetic anomalies, and the questions inherent in prenatal testing to determine which fetus should be carried to term – that are inevitably marked by a disability history of “genetic genocide.” In pointing to the eugenic impulses behind these rights, the disability movement positions itself within neoconservative and fundamentalist religious critiques of progressive politics. Such internal conflicts within a movement that embraces both a progressive civil rights heritage and simultaneously articulates conservative political values have tremendous consequences for both movement politics and sociolegal scholarship on the articulation of rights within social movements.

Notes

1

Buck v. Bell, 274 U.S. 200 (1927).

2

Skinner v. Oklahoma, 316 U.S. 535 (1942).

3

Pub. L. No. 110-374, 2008.

4

“An Act requiring certain information relative to Down Syndrome be provided to certain parents and families” (Bill H.3825)

5

Florida followed in 2012, and Kentucky in 2013. In 2014, Delaware, Maryland, Pennsylvania, Louisiana, and Ohio passed Down Syndrome Information Acts (DSIA) into law. In 2015, Indiana, Illinois, Texas, and Minnesota followed with their own DSIAs.

6

Indiana HB 1337 (2016) and North Dakota HB 1305 (2013).

8

The Supreme Court recently invalidated central aspects of TRAP laws. In Whole Woman’s Health v. Hellerstedt (579 U.S. __ (2016) the Court ruled that the stringent restrictions on Texas abortion clinics and physicians had placed an “undue burden” on women’s basic right to abortion for up to the point that the fetus is viable outside the womb. The Court’s ruling was a clear sign that abortion laws regulating clinics and physicians must actually come with evidence that they fulfill a claimed interest – women’s health – and then weigh that purpose against the burden on women’s access to abortion. Texas’ failure to bring that evidence will have repercussions for TRAP laws in other states, including similar laws burdening abortion access for women, such as three-day waiting periods that cause hardships for women who must travel to reach a clinic. The National Right to Life Committee immediately announced that it will shift its legislative strategy away from TRAP laws and back towards the “humanity of the unborn child.” (“Anti-Abortion Group Presses Ahead Despite Recent Supreme Court Ruling” New York Times, July 7, 2016.)

9

Eight states prohibit abortion on the basis of fetal sex: Arizona, Kansas, North Carolina, North Dakota, Pennsylvania, Oklahoma, Pennsylvania, and South Dakota (Guttmacher Institute, 2016).

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