This article analyzes recent state laws and legislative debates in the United States concerning the prohibition of abortions performed because of a diagnosis of fetal disability. The article brings together critical theories to analyze the legislative records—including floor debates and committee hearings—in the four states that enacted disability PRENDAs before 2019. This analysis shows how social conservatives use disability PRENDAs to present themselves as the protector of the oppressed, while advancing their views about family and gender. Furthermore, I argue that PRENDAs place the burden for structural economic and political concerns on the shoulders of individuals, especially pregnant persons, while largely ignoring the medical-industrial complex as well as the government's own poor funding of social services for people with disabilities. Critical attention thus needs to be paid to how factors such as the ascendancy of genetics, the privatization of medicine, and the state's facilitation of capital accumulation for biotechnology corporations help constitute the ideal self-regulating risk-averse pregnant neoliberal subject. To bring attention to these factors, the article examines the political economy of non-invasive prenatal tests (NIPTs).


In May 2019, the US Supreme Court decided not to review the constitutionality of Indiana's prenatal nondiscrimination law. The law, which was signed by former governor Mike Pence, would prohibit abortions performed "solely because of the fetus's race, color, national origin, ancestry, sex, or diagnosis or potential diagnosis of the fetus having Down syndrome or any other disability." 1 The Supreme Court's decision not to review the case left in place the Seventh Circuit's opinion overturning the law as unconstitutional based on existing abortion jurisprudence. Yet Justice Clarence Thomas penned a concurring opinion that strongly suggested laws like Indiana's should be upheld in future decisions, after "further percolation" of the issue. 2 Thomas's 20-page opinion was mostly devoted to a historical account of eugenics, especially highlighting the links between birth control advocate Margaret Sanger and eugenics. He concluded:

Enshrining a constitutional right to an abortion based solely on the race, sex, or disability of an unborn child, as Planned Parenthood advocates, would constitutionalize the views of the 20th-Century eugenics movement. In other contexts, the Court has been zealous in vindicating the rights of people even potentially subjected to race, sex, and disability discrimination. 3

Indiana is not alone in considering or enacting a prenatal nondiscrimination law. In fact, eight states have enacted sex-selective abortion bans, three have enacted race-selective bans, and five have passed disability-selective abortion bans (Guttmacher Institute 2019), although court orders have blocked the implementation of many of these laws. While scholars have explored the race- and sex-selective bans (Denbow 2016, Musial 2014), my focus here is on disability-selective "prenatal nondiscrimination acts" (disability PRENDAs). These laws have been enacted only over the past few years. North Dakota was the first state to enact a disability-selective PRENDA in 2013; Indiana and Louisiana enacted disability PRENDAs in 2016; Ohio passed its version in 2017; and Kentucky's was enacted in 2019. The exact terms of these laws differ, as discussed below, but they all prohibit in some form abortion sought because of a potential for a fetal disability.

In this piece I offer an analysis of the terms of the debates in state legislatures about disability PRENDAs. I show how social conservatives use disability PRENDAs to present themselves as the protector of the oppressed, while advancing their views about family and gender roles. In particular, I provide a discourse analysis of the legislative records available from the four states that enacted disability PRENDAs before 2019: Indiana, Louisiana, North Dakota, and Ohio. The sources reviewed include floor debates and committee hearings in each state legislature. 4 I comprehensively reviewed statements from both elected representatives as well as the numerous interested parties who testified at state capitols. These legislative records provide a window into how state lawmakers and interested constituents have framed these bills and their implications.

The article's analysis of these legislative records employs the perspective of feminist disability theory, which, as Rosemarie Garland-Thomson puts it, "hinges on a broad understanding of disability as a pervasive cultural system that stigmatizes certain kinds of bodily variations" (2002, 5). Placing PRENDAs in the context of this pervasive cultural system requires attending to the complexity of political and economic systems. Doing so leads me to conclude that PRENDAs place the burden for structural economic and political concerns on the shoulders of individuals, especially pregnant persons, while largely ignoring the medical-industrial complex as well as the government's own poor funding of social services for people with disabilities. Critical attention thus needs to be paid to how factors such as the ascendancy of genetics, the privatization of medicine, and the state's facilitation of capital accumulation for biotechnology corporations help constitute the ideal self-regulating risk-averse pregnant neoliberal subject.

To bring attention to these factors, after the close reading of legislative debates, the article places PRENDAs in a broader context that is conspicuously absent from state deliberations. I examine the causes and ramifications of the recent widespread adoption of a new, potentially unreliable, prenatal screening test. Biotechnology corporations have largely spearheaded the precipitous rise in the popularity of these non-invasive prenatal tests (NIPTs), which have rapidly changed the practices of prenatal care worldwide. This section of the article examines the legal and regulatory framework that has enabled the rapid translation of the tests into clinical practice in the US and enabled the accumulation of large profits for biotechnology corporations. In particular, I offer an analysis of the political economy of NIPTs that is based on a thorough survey of the legal, regulatory, and economic issues that affect NIPT development and distribution. I discuss an array of topics, including the absence of regulation over NIPTs, key attempts to regulate NIPTs, medical professional guidelines, and medical malpractice doctrines to contextualize the routinization of NIPTs and to highlight the role of political economy.

This analysis of changes in prenatal screening builds on the work of scholars who have placed reproductive technologies in a broader context to show how they further neoliberal trends and place responsibility for health and risk on individuals (Rapp and Ginsburg 2004, Roberts 2009, Mykitiuk 2000). As Dorothy Roberts argues, "genetic selection technologies reinforce biological explanations for social problems and place reproductive responsibility on women, thus privatizing remedies for illness and social inequity" (2009, 785). In focusing on conservative attempts to prohibit selective abortions, I extend this analysis to show how social conservatives take up the language of oppression and discrimination in order to maintain a focus on individual reproductive decisions rather than to propose collective solutions that might lead to regulations of the biotechnology industry or more robust social welfare.

Thus, to contextualize the PRENDA debates further, after the section devoted to the political economy of prenatal screening, I examine important recent changes to social services for people with disabilities, including the privatization of these services. As examined further below, the social conservative agenda would put responsibility for support of people with disabilities on families and on faith-based services. Although critical of prenatal testing and selective abortion, supporters of disability PRENDAs nonetheless direct "attention away from social causes and solutions," which "reinforces privatization, the hallmark of a neoliberal state that seeks to reduce social welfare programs while promoting the free market conditions conducive to capital accumulation" (Roberts 2009, 785).

In bringing attention to the political and economic realms of disability and prenatal testing, I follow disability scholars and activists like Anne Finger who argues: "It is a little too pat to say that decisions about whether to have amniocentesis or to abort a disabled fetus are personal ones. Ultimately, of course, they are. But we need to have feminist, political language and ways of thinking about this issue…." (1983, 18). My goal here is to contribute to the development of that language and alternative ways of thinking through both an analysis of the social conservative use of disability as a way of pushing an anti-abortion agenda as well as a critique of the political economy of prenatal screening. While many scholars offer important critiques of the ableism of professional medicine and prenatal screening, those critiques are often limited by a failure to interrogate the role of capitalism. 5 In centering issues of political economy here, my aim is both to reveal the extent to which profit-driven medicine and technology shapes the landscape of reproductive politics and to argue that foregrounding a critique of the medical-industrial complex is a promising way forward for building solidarity between disability and reproductive rights activists. 6

Part of my concern here is that legislative debates on disability PRENDAs are one of the few venues for public discussions of prenatal testing and selective abortion. This has meant that the right is able to assert itself as the protector and voice of the disabled community. Indeed, as Finger (1983) has argued, "right-to-lifers" are often one of the most prominent groups confronting the ableist aspects of prenatal testing. One thing feminists need to confront is that, while Justice Thomas got a lot wrong in his concurrence in Box, he is right that prenatal testing and selective abortion cannot be totally divorced from the legacy of eugenics and its devaluation of people with disabilities. It's a problem if Justice Thomas is one of the few prominent voices drawing attention to this issue. A thorough-going left analysis of prenatal testing that both upholds women's right to bodily integrity and freedom and is also attentive to the political and economic conditions that structure individual decisions is sorely needed to combat the right's aligning of itself with disability activism.

This article's approach is thus indebted to the burgeoning scholarship and activism around reproductive justice, which similarly argues for non-interference in reproductive decisions at the same time that it calls for structural changes that would alter the conditions under which such decisions are made (see Roberts 1997, Ross and Solinger 2017). For example, SisterSong (2020), Women of Color Reproductive Justice Collective, explains Reproductive Justice "as the human right to maintain personal bodily autonomy, have children, not have children, and parent the children we have in safe and sustainable communities." Achieving this involves an analysis of power and structural injustice and thus, as Alison Piepmeier argues, Reproductive Justice offers a promising frame for discussions of reproduction and disability. Piepmeier sees reproductive justice as a helpful response to the limitations of feminist pro-choice language in the context of prenatal testing and abortion. While the language of choice "is individualized and ignores the broader societal contexts that shape reproduction, parenting, and our understanding of children," reproductive justice focuses on those broader contexts (2013, 161). In fact, in interviews with parents and prospective parents, Piepmeier found that many of them understood their decision as "far more complex than the rhetoric of 'choice' suggests" (2013, 177).

Similarly, a scholarly emphasis on the ethics of choosing selective abortion has tended to let the biotechnology industry off the hook for its role in shaping reproductive care. Attention to the political economy of prenatal screening offers a productive left alternative that heeds Alison Kafer's call to confront the progressive rhetoric of the antiabortion movement instead of succumbing to "the logic of the pro/anti-abortion binary," which fuels the idea that "anyone who expresses concern about particular abortion practices or rhetorics can too easily appear as an enemy of feminism and an opponent of reproductive rights" (2013, 18). 7 This does not mean that we should treat a decision to have an abortion after a positive genetic screen as necessarily morally problematic. I agree with Claire McKinney (2016) that judgments like that reduce the complexity of pregnant individual's decision-making and that "supporting people's reproductive choices reinforces a belief in bodily self-determination … and individuation." This commitment to bodily self-determination and individuation is shared with disability politics and hence points the way toward "a feminist pro-disability reproductive agenda" for which many scholars have advocated (Garland-Thomas 2002, Garland-Thomas 2005, Piepmeier 2013, Rapp and Ginsburg 2004).

Vulnerable Fetuses and Family Values

Disability PRENDAs are part of a coordinated nationwide effort to prohibit abortion and eventually overturn Roe v. Wade. The influential organization Americans United for Life (AUL) publishes a state legislative guide each year. For the last several years the guide has included model legislation for a sex- and disability-selective abortion ban. A portion of each of the laws studied here almost directly reproduces language found in the most recent AUL guide (2019), though they adopt different provisions of the model law. For example, the Ohio law would prohibit abortion sought "in whole or in part" because of any indication or diagnosis of Down syndrome as well as "[a]ny other reason to believe that an unborn child has Down syndrome," 8 while the North Dakota law is more expansive and prohibits abortion for "sex selection" and "abnormalities." 9 Louisiana's law would apply only 20 weeks after conception and prohibit abortions sought "solely because the unborn child has been diagnosed with either a genetic abnormality or a potential for a genetic abnormality." 10

Each of these laws exempts "pregnant women" from any criminal or civil liability under the statute, instead targeting physicians for penalties. The AUL guide even presents someone who obtains a prohibited abortion as a "crime victim," who should be afforded all of the protections of other crime victims (2019, 324). In the wave of anti-abortion legislation that has preoccupied legislatures in many states in the last decade or so, legislation overwhelmingly and explicitly targets doctors and medical providers for criminal sanction, not pregnant persons, under the guise that medical providers prey on women and pressure people into abortion (see Siegel 2008). This allows conservatives to frame their denial of agency to pregnant persons both as a way of facilitating women's true agency and as a way of expressing concern for the most vulnerable people: fetuses (see Denbow 2015). In other words, the discursive presentation of fetuses as defenseless and at risk allows pro-life lawmakers to obscure the denial of agency of the subordinated that is at the base of so much conservative thought (Robin 2011).

PRENDAs add "protected categories" to the description of the fetus, which intensifies this dynamic. Not only do social descriptors of race, sex, and ability help establish the fetus as a social being, they also intensify the vulnerability and marginalization of the fetus. It is noteworthy that these laws are often titled prenatal nondiscrimination acts and that supporters frequently present them as anti-discrimination civil rights laws. 11 One of the strongest legislative supporters of PRENDAs, Indiana Senator Liz Brown, made the argument that PRENDAs are constitutional under US Supreme Court precedent on abortion because they are anti-discrimination measures. 12 Representative Casey Cox in the Indiana House described the PRENDA bill as part of "a human rights' cause" because it focuses on "those who are the most vulnerable." He went on to frame it as an equality measuring, saying: "[This legislation] redirects the sentiment about who is worthy of the protection of our laws…. at the very least it places those suffering from a disability or of being a non-preferred race or gender on equal footing with other babies …" 13 Along these lines, Jessica Koehler from Ohio Right to Life testified, "abortions resulting from tests like these … are discriminatory toward those with disabilities. It is that simple. How contradictory this seems to be, in a time where our culture so highly values diversity and works so hard to promote acceptance of the marginalized members of our communities." 14

The fetus is variously figured in legislative hearings and debates as vulnerable and "defenseless," 15 as well as innocent. Several lawmakers portrayed children with disabilities as especially innocent and angelic. In Louisiana, Representative Edmonds argued in favor of the disability PRENDA by positioning the legislatures' role "constitutionally, professionally, and emotionally" as the protector of "the innocent," further portraying children with disabilities as "the greatest angels and blessings." 16 To highlight the innocence and purity of people with Down syndrome, a PRENDA advocate in Ohio noted that it was unlikely that you could find one person with Down syndrome who has been "caught up in our opioid epidemic." 17 These statements are part of a broader trend in anti-abortion rhetoric and recent legislation to employ the idea of fetal innocence (see Denbow 2016, Guenther 2012). In the case of PRENDAs, innocence is mobilized alongside, and intertwined with, the heightened vulnerability and marginalization of fetuses marked by disability, race, or sex.

Fetal innocence and victimization are juxtaposed against the threat and guilt of the pregnant person who would abort a fetus with a positive test result for a genetic condition. She is often presented as a threat and often as falling short of the responsible and selfless mother ideal. Importantly, the innocent fetus acquires its symbolic force in part from its distinction from, and opposition to, the irresponsible, the guilty (see Guenther 2012). As one of the sponsors of the Ohio PRENDA bill, Representative Sarah LaTourette, said: "Not everyone is fit to parent a child with Down syndrome; I will be the first person to admit that." 18 Another sponsor of the Ohio bill, Derek Merrin, said: "The inability or unwillingness of a parent to care for their child should not be a death sentence …" 19 One of the most explicit examples of rendering parents selfish came from William Schuh, "a father of an adult disabled person" and a board member of a "major provider of services to the disabled" in North Dakota. In written testimony, Schuh argued that humans have "infinite ability to rationalize our own self interest when confronted with situations that may cause us perceived or feared inconvenience or hardship." 20 Thus, pregnant persons who would abort are sometimes presented as particularly irresponsible and selfish, which runs contrary to the social conservative ideal of motherhood. Indiana Senator Brown revealed her distrust of women in noting, "I would be happy to have a bill that would mandate family be involved" in the abortion decision. 21

These comments present the primary problem to be addressed as one of the irresponsibility, selfishness, or ineptitude of the mother, not a lack of social, economic, or emotional support. This framing releases the state from any obligation to provide such support; PRENDAs protect fetuses as isolated individuals to which the only public responsibility is ensuring they are born. Conservative lawmakers tend to ignore the lack of social services for people with disabilities and treat as trivial the reproductive labor involved in raising children with special needs. 22 Some of the most powerful anti-PRENDA testimony was from women of color who noted that marginalized women already bear a disproportionate burden of unremunerated and unsupported reproductive labor. Jessica Roach from an Ohio group that she described as "a Black Woman led reproductive justice organization," made reproductive labor central in her argument against PRENDAs: "If what this assembly stands for is the right to life, it must also consider the stand for actual living entities, those that have additional family members and self, to care for, that require our health, well-being, and presence in order to accomplish the daily tasks at hand." 23

In a society that fails to provide adequate medical care and social insurance for families caring for children with disabilities, this legislation would most harshly affect mothers in poverty and mothers of color. Those with resources would be able to travel and to attain abortions despite disability PRENDAs and, if they did bear a child with a developmental disability, would be more able to bear the financial costs of childrearing. Roach's testimony brings attention to how, in Jasbir Puar's words, "state discourses of inclusion"—in this case disability PRENDAs—instrumentally invoke "[t]he category of disability to actually produce debility and sustain its proliferation. In a literal sense, caretakers of people with disabilities often come from chronically disenfranchised populations that endure debilities themselves" (2017, xvi). For Puar, debility is the other side of disability. As she explains the two "are necessary supplements in an economy of injury that claims and promotes disability empowerment at the same time that it maintains the precarity of certain bodies and populations …" (xvii). PRENDAs enable conservative lawmakers to claim they are taking an inclusive stance yet they fail to address systemic issues that keep many caretakers in a state of precarity.

Moreover, in presenting themselves as the protectors of marginalized people in the womb, Republican lawmakers portray themselves as protectors of national Christian values. A common refrain of disability PRENDA supporters was to point to state and federal anti-discrimination laws such as the ADA as evidence of state and national commitments to inclusion. Many disability PRENDA supporters explicitly invoked Christian values, often characterizing them as the foundation of US law. Janne Myrdal from the Concerned Women for America of North Dakota said "our founding fathers clearly delineated the right to life as one that is unalienable and endowed by our creator." 24 In Ohio, Josh Brown from Citizens for Community Values argued that "American and Ohioan law—which is rooted in Judeo-Christian values—values all human life. All of us are created in the image of God." 25 Senator Ronald Grooms, who voted for the Indiana legislation, said: "I think this bill is an example of what sets America and the United States and Indiana apart as far as being, I'd say the word Christianity." 26 These comments invoke a myth of American inclusion to fortify a sense of nationalism, which is pitted against the un-American and anti-Christian values of those who would abort.

Yet the limits of the myth of inclusion are evident in the array of judgements with which parents of children with disabilities are confronted. In North Dakota, a mother of a child with Down syndrome, Beth Nodland, showed how those who bear babies with genetic conditions can be subjected to ableist and fiscally conservative judgements about who should bear the costs of raising children. She gave the following neutral testimony on the bill:

I want to read to you some direct responses to me that I get on national forums … 'The difference with the downs is that it is preventable. The amniocentesis after 35 pretty much eliminates the potential. Yet for the people who refuse abortion [they] should be made responsible for the lifelong up keep of these kids they will bring into the world. Since there is … choice there is no excuse for blatant neglect or [ir]responsibility… ' Another one is, 'All is well and good for people who can afford to have this type of child, but for the people who do not have the resources the American taxpayer, pays and pays and pays and pays until death do them part …' … So the question is do we pay for their sustenance? Do we take care of the weakest among us? This bill is a big national conversation that needs to happen. What do we do as a people and what do we do to support people once they are born? (sic). 27

Nodland's testimony illustrates how parents who have children with Down syndrome, precisely because they have a choice that has been enabled through technological developments and the availability of abortion, may be blamed for their decisions and expected to bear all costs themselves. 28 The fact that she was neutral on the bill, but grateful for the opportunity to have a conversation about this issue, illustrates the danger of PRENDA debates being one of the few venues for public deliberation concerning prenatal testing and the support of people with disabilities.

When the most prominent public discussion concerning reproduction and children with disabilities is in the context of PRENDAs, the right is able to frame the issue in a way that obscures the larger cultural, economic, and regulatory context. 29 This context puts people in the position of, first, having to make a decision about prenatal screening and abortion and, second, being presumed solely responsible for bearing the economic and emotional hardship of that decision (see Denbow 2015). The above testimony underscores the need for the very kind of left analysis of the genetic screening industry offered in the next section. It also indicates the need for more funding for social services for people with disabilities. Moreover, while the use of non-discrimination language in these laws is an attempt to place this legislation in the tradition of progressive civil rights legislation, like that legislation, PRENDAs can be critiqued from the left for their assumption that discrimination should be thought of as a matter of individual harm and actions rather than as a result of systemic social and economic issues.

The Political Economy of Non-Invasive Prenatal Testing

[I]t was one thing, and bad enough, that a mother out of fear and with state sanction and lack of loving support, destroy the child in her womb. But it is another dangerous and socially degrading step, that genetic testing has been turned to the task of providing a quality product.

-William Schuh 30

One way to understand this shift in issues that comes with improvements in reproductive technology is to see it in the context of the history of technological improvements. What usually accompanies such change is a rise in the standards of production … With new reproductive technology, will our standards for our children rise?

-Barbara Katz Rothman 31

William Schuh's statement, quoted above, is one of the few instances in state legislative records of a critique of prenatal testing itself. While Schuh elides the question of material support for raising children, suggesting that it is a lack of love that leads to abortion, he does make the important point that the genetic testing industry seems to treat fetuses as commodities. In this regard, his testimony echoes that of feminist scholar Barbara Katz Rothman, also quoted above. The fact that legislative debates generated so little discussion of the prenatal testing industry is significant. In fact, in the focus on the individual, PRENDAs obscure the political and economic structures that inform the development and proliferation of prenatal screening. The medical-industrial complex and the underfunding of social services for people with disabilities are key to understanding the complex issues that prenatal testing raises. PRENDA opponents rightly and extensively commented on cuts to, and the general underfunding of, social services for people with disabilities. However, a consideration of the prenatal testing industry and the role of medical malpractice in routinizing testing was largely absent from debates and testimony. This section offers a preliminary discussion of the political economy of a new form of prenatal testing to show why this is a significant oversight.

Scholarship on prenatal testing also tends to avoid significant engagement with political economy. 32 Much of the scholarship about the practice of abortion after a positive test result for a genetic condition like Down syndrome focuses on ethics. Many of these ethical analyses center on how and in what ways prenatal testing and selective abortion might reflect and reinforce stereotypes and stigma of disability (Asch and Waserman 2005, Kaposy 2013, Nelson 2007, Steinbock 2000). 33 While this ethical literature sometimes acknowledges that aspects of the political economy can form the context within which the testing is developed and becomes routinized, a deep look at the political economy of prenatal testing and disability services is largely absent from these debates. 34 Yet one of the preconditions for seeking an abortion due to a genetic condition of the fetus is the availability of prenatal screening and diagnosis. Focusing on the role of political economy in the development and routinization of new forms of prenatal screening reorients the discussion and opens up different avenues for regulation and public discussion.

While the ability to diagnose the fetus in utero is not especially new, over the course of the last decade, the terrain of prenatal screening has changed dramatically with the entrance onto the market of NIPTs, sometimes called cell-free DNA testing. 35 NIPTs were developed in the wake of the completion of the Human Genome Project (HGP), which was completed with approximately $2.7 billion of US taxpayer funding. 36 Some prominent advocates for the HGP heralded its potential to lead to prenatal testing that would in turn lead to abortion of diagnosed fetuses. 37 As Adrienne Asch explains, "[s]ome proponents of the Human Genome Project from the fields of science and bioethics argue that in a world of limited resources, we can reduce disability-related expenditures if all diagnoses of fetal impairment are followed by abortion" (Asch 1999, 1652).

NIPTs can be used earlier in pregnancy than the more invasive and riskier procedures of amniocentesis and chorionic villus sampling (CVS) and are more accurate than maternal serum screening. Unlike amniocentesis and CVS, NIPT carries no risk of miscarriage because the test is performed through a simple blood draw. A pregnant person's blood contains placental cell-free DNA, and NIPTs analyze that placental DNA to screen for certain chromosomal conditions, usually including Down syndrome, trisomy 18, and trisomy 13. NIPTs can also sometimes be used to screen for absent or duplicate sex chromosomes (National Institute of Health 2019).

Although amniocentesis, CVS, and other prenatal tests raise some of the same ethical and political concerns as NIPTs, I focus here on NIPTs because that technology has been quickly adopted in medical practice and has altered the landscape of prenatal care in distinct ways. Crucially, medical researchers have pointed out that, unlike older prenatal tests, "the clinical translation of NIPT technologies has been predominantly spearheaded by industry" (Agarwal et al. 2013). Furthermore, as a 2012 article in Nature noted, "[o]bservers expect the advantages of the non-invasive tests to expand the pool of women who opt for prenatal genetic screening each year from fewer than 100,000 to as many as 3 million" (Hayden 2012). Chris Kaposy (2013) has argued that the routine use of NIPTs will likely increase rates of selective abortion.

The routinization of NIPT use means large profits for biotech corporations. Over less than a decade, NIPT companies have attracted millions of dollars of venture capital funding, and 6 million pregnancies have been screened using NIPTs globally. By 2025 NIPT revenues are projected to surpass $2.5 billion (Molteni 2019) as the tests are predicted to expand the number of pregnant people who use prenatal screening to almost 3 million annually. Importantly, prenatal testing is not necessarily limited to those who can afford it; welfare systems and private insurance increasingly cover genetic screening as it becomes a routine part of prenatal care (van den Daele 2006, Bumiller 2009). Because of the lucrative market for the screening, in the last decade there have been a dizzying array of acquisitions, intellectual property lawsuits, and settlements involving the companies that produce NIPTs.

The regulatory context has contributed to the steep rise in the popularity of NIPTs. The screening tests are classified as laboratory-developed tests (LDTs) and because of a loophole are not subject to FDA regulation. Yet the FDA has noted the problems with NIPTs, including their potential to produce high rates of false positives and false negatives. The agency has come up with "a possible approach to LDT oversight," but, in general, NIPTs remain free from FDA regulation (Office of Public Health Strategy 2015, FDA Discussion Paper 2017). 38 Congress has also failed to develop a legislative response. Instead, the screening tests are under the oversight of the Centers for Medicare and Medicaid Services as part of the Clinical Laboratory Improvement Amendments (CLIA) program, which is "primarily concerned with the process of testing" (Office of Public Health Strategy 2015).

Unsurprisingly, the biotech industry is opposed to more regulation on the grounds that it would undermine innovation and patient care. The industry position on regulation is sometimes funneled through seemingly neutral organizations. For example, one anti-regulatory advocacy organization, the Association for Molecular Pathology (AMP), bills itself as "an international nonprofit medical society that has as its mission to advance the clinical practice, science, and excellence of molecular and genomic laboratory medicine through education, innovation, and advocacy to enable the highest quality health care." 39 Its name and mission statement, as well as many of its position papers, evoke a commitment to the public trust and patient care while being obtuse about the organization's connection to biotech corporations. Yet the company lists Roche, one of the makers of an NIPT called Harmony, 40 as a "diamond partner." 41 Before being appointed, the executive director "spent 14 years in the biotechnology and diagnostics industries, in various education, marketing and business development roles." 42 Though the scope and direct influence of corporate money on the lack of regulatory or legislative oversight of NIPTs is beyond the purview of this article, the foregoing demonstrates that corporations have sought to influence regulation in a way that would protect their profits. It is worth noting that the American College of Obstetricians and Gynecologists (ACOG) also frames regulation as a threat to innovation. In its comment to the FDA on proposed LDT regulation, ACOG argues that "innovation can and has improved women's health," citing NIPTs as an example. This presumes that women's health is improved through fetal screening. New options are understood as enhancing health, yet what constitutes health and whether health should be the sole goal go unquestioned.

In 2015 modest legislation to address concerns about NIPTs was introduced in Congress. HR 3441, the Accurate Education for Prenatal Screening Act, would have directed the CDC to develop prenatal screening education for patients after consultation with disability support organizations, medical professionals, patient advocates, and prenatal screening companies. 43 ACOG submitted written testimony opposing HR 3441, arguing that the bill was too descriptive, premature, and duplicative. With regard to its duplicative claim, ACOG expressed preference for the "exciting new public-private partnership" of the Perinatal Quality Foundation (PQF) over legislation. PQF is a non-profit that "facilitates the transition of emerging technologies into clinical care." 44 This framing assumes that emerging technologies should be translated into clinical care and suggests PQF's close alliance with the medical technology industry. In fact, PQF has received contributions from Sequenom and Quest Diagnostics, two companies that are significant players in the genetic screening industry (Quest Diagnostics 2013, Sequenom 2015). In advocating a public-private partnership to address the myriad health and ethical concerns that NIPTs raise, ACOG ignores the tension between profit-driven industry and the public good. More than that, they may be redefining the public good in a neoliberal and biotech idiom. Roxanne Mykitiuk argues that "genetic testing and genetic understandings of health, are seen as a means to create the ideal citizen of the post-Keynesian order—one vigilant about her/his economic burden or contribution to society and willing to discipline themselves or their procreative activity in the name of maintaining healthy and productive citizens" (2000, 112).

The fact that private industry is not centrally concerned with ethics or the public good is apparent in direct-to-consumer advertising for NIPTs. A 2016 study of online direct-to-consumer NIPT advertising found that none of the websites of the major NIPT companies include content on ethical issues. Some websites offered services that are not clinically indicated. Although clinical practice guidelines recommend the tests only for pregnancies with an increased potential for chromosomal conditions, some websites present the tests as though they are for all pregnancies. In fact, the tests are more unreliable when used on pregnancies with less of a likelihood for a chromosomal diagnosis (Farrell et al. 2016). Also, the regulatory decision to allow direct-to-consumer advertising—yet another example of the lack of regulation over the biotech industry—has fueled the widespread adoption of NIPTs in clinical practice (Bromfield and Lenderman 2017). My own review of the online direct-to-consumer advertising of the four major companies that dominate the NIPT market in the US reveals that these companies present the screening as an antidote to anxiety. One company even named its test "Harmony." Thus, a company that helps stoke fear of abnormal fetal development then offers a product to ease the very anxiety that it played a role in creating. This is a clear example of capitalist creation of new markets. It also highlights how industry does not just provide "more options" but actually constitutes an ideal self-regulating neoliberal subject.

Medical professional guidelines and practice have also played an important role in facilitating the adoption of NIPTs and producing a self-regulatory norm of pregnancy. ACOG guidelines recommend that "[a]neuploidy screening or diagnostic testing should be discussed and offered to all women early in pregnancy, ideally at the first prenatal visit" (2016, 2). Though the guidelines state that information and counseling should be non-directive, they also reflect and reinforce a narrow medical understanding of disability: "The intent of counseling for aneuploidy is to inform the pregnant woman about chromosomal disorders, provide information regarding her specific risk of carrying a fetus with aneuploidy, and review the available options so that she can make an informed choice regarding screening or diagnostic testing" (2016, 3). Information that physicians provide about chromosomal disorders is likely to be deeply reflective of the medical model of disability, which emphasizes bodily impairments rather than social context. 45 Asch (1999) has called for an overhaul of the counseling that prospective parents receive, noting the large curricular gaps in genetic counseling programs and medical schools on the topic of life with disability. A common theme in disability critiques of prenatal testing is that medical professionals often hold ableist beliefs (Finger 1983, Asch 1999). 46 Even when counseling is nondirective it can convey a message that disabled lives are less valuable.

In fact, in legislative discussions, some PRENDA supporters blamed doctors' elite and ableist prejudices more than pregnant persons for the rise of abortions after a positive prenatal screen. In keeping with trends in pro-life rhetoric, some PRENDA supporters portray doctors and the "abortion industry" as coercive. While PRENDA opponents tended to claim that physicians give factual and non-directive information to women, they failed to address the stories of parents of children with disabilities who described ableist reactions from medical professionals. After being told her fetus had a 50% chance of Down syndrome, Kathy Allen in Louisiana testified:

my doctor's next statement to me was, 'I have scheduled an amniocentesis.' He didn't ask me whether I wanted this invasive procedure, he simply told me that he had scheduled it. I felt as though I was being pressured into having a medical test for the doctor's benefit and not for mine. Since there was no information being provided to me about Down syndrome, I knew in my spirit that the only reason to confirm a diagnosis of Down syndrome was to give me the option of terminating the pregnancy. 47

Simply pointing out, as opponents of disability PRENDAs often do, that PRENDAs interfere in the patient-doctor relationship and would stifle frank communication, is not a sufficient response to concerns about ableism in the medical profession.

Importantly, ACOG guidelines contain no attention to the fact that the very decision to have a screening test puts pregnant persons in the position of having to make a choice about pregnancy termination based on the information received. In this way, genetic screening funnels responsibility for the management of social problems like the treatment and status of people with disabilities onto individuals, primarily pregnant women. As Rayna Rapp argues, "[w]omen are both constrained and empowered through technologies like amniocentesis to serve as our contemporary moral pioneers." Women are also, "[a]t once held accountable at the individual level for a cascade of broadly social factors which shape the health outcome of each pregnancy and individually empowered to decide whether and when there are limits on voluntary parenthood" (1999, 317-318). In focusing on women or individual doctors as the locus of responsibility and wrongdoing, rather than lack of social support or the profit-driven prenatal testing industry, PRENDAs perpetuate this. As Roberts writes, "[w]idespread prenatal testing has already assigned pregnant women primary responsibility for making the 'right' genetic decisions" (2011, 217).

Medical guidelines present prenatal testing as an issue of information and risk management, despite declaring that all decisions should be informed by "the patient's clinical circumstances, values, interests, and goals" (ACOG 2016, 1). Yet, these tests and the guidelines themselves constitute pregnancy as an event to be managed through self-regulation and risk assessment. The language of risk in prenatal testing reinforces the social construction of disability as a hardship and struggle for families. Asch argues that the literature should instead frame diagnoses as "possibilities" or "likelihoods" because the language of risk presumes that disability is negative and should be avoided (2000). Although professional counseling on genetic testing may present the information attained from testing as an end in itself, Nancy Press and colleagues argue that this obscures the "primary purpose of reproductive genetic testing—the ability to terminate a pregnancy for a fetal anomaly" (2011, 95). 48

One factor that influences doctor-patient discussions about prenatal screening is fear of medical malpractice lawsuits. Wrongful birth lawsuits—in which parents sue a physician for not adequately warning of genetic risks or for failing to diagnose the fetus—offer an avenue for liability. These lawsuits often put parents in the uncomfortable position of having to argue that they would have sought abortion if the fetus had been properly diagnosed (Ossorio 2000, Pergament and Ilijic 2014). Though such lawsuits are uncommon, some plaintiffs have recovered substantial awards under these suits (Pergament and Ilijic 2014). As Roberts notes, "[w]hile there are virtually no legal consequences for doctors who encourage genetic tests, doctors who fail to use them may be liable for damages in 'wrongful birth' lawsuits" (2011, 219; See also Ossorio 2000). In fact, an earlier screening test was quickly adopted as a routine part of prenatal care after ACOG issued a Legal Alert warning physicians that they could face liability if they did not offer it (Press et al. 2011). However, fears of an onslaught of medical malpractice litigation is likely overstated.

Medical professional organizations and medical malpractice insurers often push a false narrative of a "crisis" of medical malpractice liability that frames patients who sue as getting windfall payments that increase malpractice premiums and drive physicians out of practice. This "tort reform" narrative grossly misrepresents the issue. First, it downplays the existence of medical malpractice and the real injury done to patients when physicians act negligently. Second, it ignores that limits on medical malpractice liability do not translate into lowered physician insurance premiums, which highlights the problems with the largely unregulated profit-driven malpractice insurance industry (Boehm 2005). Third, it ignores the role of patients' skyrocketing health costs as a reason for suing (Boehm 2005, Studdert, Brennan, and Thomas 2000, Hickson et al. 1992). In fact, an important component of the medical-industrial complex is that the wealth of pharmaceutical and biotechnology corporations depends on the debt of patients. Parents who are faced with exorbitant medical bills for a child with a disability may look to a lawsuit as one way to ease their debt. Thus, the very existence of privatized medical insurance and the gross inadequacy of health insurance in the US create an atmosphere that encourages malpractice lawsuits. 49 Fear of liability, in turn, may encourage physicians to push screening and downplay its ethical complexity. 50 Medical malpractice suits are another instance not only of letting the biotech industry off the hook for the myriad consequences of its technologies but also increasing corporate profit.

The lack of government oversight of NIPTs and the state's facilitation of capital accumulation in the biotech industry are both connected to the privatization of medicine. As Mykitiuk puts it, there has been a "shift in state policy from social protection to the encouragement of capital accumulation." The state fosters the biotechnology industry, "justified on the basis of its contribution to health," while biotechnology itself prioritizes "individual responsibility and risk management in the realm of health" (2000, 108). In the absence of government oversight of corporations, responsibility now falls on individuals to make decisions and exercise responsibility for medical screening that has been developed largely without public debate or input. Yet, through PRENDAs, state governments are exerting power over individual medical decision-making. This is an example of what Lauren Berlant describes as an aspect of the privatization of medicine that manifests as "a rerouting of the relations of governmental, corporate, and personal responsibility rather than as it often seems to be, the ejection of the state from oversight of the public good in deference to corporations" (2007, 770). 51

Were state actors deeply concerned about the well-being of pregnant persons and people with disabilities, they could think about how to regulate the development and marketing of prenatal screening as well as the role that public subsidies and intellectual property law play in intensifying the profit motive behind technology that has far-reaching social consequences. Yet too often technological innovations and medical progress are accepted as both beneficial and inevitable. The biotech industry, which depends heavily on the investment decisions of venture capitalists, largely drives decisions about the development and adoption of a technology with complex ethical and political implications.

Disability, the State, and Faith-based Social Services

I'll tell you there are extra financial costs of raising a child with special needs, but God always provides.

-Will Hall 52

While the state has facilitated the development and adoption of NIPTs into clinical practice in the ways described above, it has simultaneously failed to support people with disabilities. Examining the trends in public support for people with disabilities enables a deeper understanding both of the context within which PRENDAs are enacted and how PRENDAs relate to broader political trends and issues. In fact, opponents of disability PRENDAs often bring up the lack of public funding for services for people with disabilities in their states, while supporters rarely confront this issue. 53 In not confronting social services, the social conservative family values argument becomes conducive to neoliberal redistributive goals. Bringing an analysis of public services for people with disabilities to the discussion of PRENDAs illuminates the alliance between neoliberalism and new social conservatism in this context. Germane to this discussion, then, is Melinda Cooper's (2017) argument that family values are central to the alliance between "new social conservatism" and neoliberalism. For Cooper new social conservatism includes the neoconservative concern with domestic social issues and the new religious right comprised of conservative Catholics and evangelicals. She demonstrates how both neoliberalism and the new social conservatism arose in response to the varied social movements of the 1960s-1980s. Those movements—which focused on issues like civil rights, welfare rights, feminism, and AIDS—sought to separate economic redistribution through social welfare from the gendered division of labor and sexual normativity. Cooper argues that "it was only when the liberation movements of the 1960s began to challenge the sexual normativity of the family wage as the linchpin and foundation of welfare capitalism that the neoliberal-new social conservative alliance came into being" (21). Whereas the common perspective is that family values are incidental to the neoliberal turn, Cooper argues that they are in fact central.

Viewing social services for people with disabilities and disability PRENDAs through this framework illuminates how social conservative family values work alongside the neoliberal agenda of cutting social services. While PRENDAs reflect the anti-abortion stance of social conservatives and PRENDA supporters present themselves as the saviors of people with disabilities, most lawmakers who support disability PRENDAs do not advocate for increased public funding for education and other services for people with disabilities. 54 This is consistent with the social conservative belief that families and private charities can best provide services. A faith in the notion that "God always provides" undermines calls for increased public services. In fact, all of the states that have enacted disability PRENDAs, with the exception of North Dakota, have significant Medicaid waiver waitlists for people seeking services for intellectual or developmental disabilities. 55

To the extent that states do fund services for people with disabilities, many of those funds go to faith-based organizations. This can be traced to the Charitable Choice Legislation, passed under President Bill Clinton, which allows the government to use public funding to pay for explicitly faith-based social services from religious providers. As such, this law conforms to the religious right view of religious freedom as the "right of deprivatized religion to impose moral law in the public realm" (Cooper 2017, 282) rather than the right to be left alone by the state. In Cooper's analysis, faith-based welfare services serve the goals of both neoliberals and social conservatives: they use private charity money to offset cuts in welfare. They also allow social conservatives to provide social services and welfare with conditions so that they can promote Christianity and traditional "family values." As David Mitchell and Sharon Snyder note, in prioritizing charity, neoliberalism has led to a "willy-nilly approach" to services for people with disabilities (2015, 16).

As an example of how services for people with disabilities are often deeply intertwined with Christian evangelicalism and also invoke the idiom of neoliberalism, consider Downsize Farm, a certified provider of services for the Ohio Department of Developmental Disabilities and an important provider of services in its region. Bob Custer, the co-founder of Downsize Farm testified in a committee hearing in support of Ohio's disability PRENDA. Custer, a pastor, and his wife, Midge, decided to start Downsize Farm after the birth of a son who has Down syndrome. Downsize farm is explicitly faith-based; its website contains many Biblical references and statements like, "At Downsize Farm, life is looking up because our help comes from the Lord." 56 The Farm also partners with The Spotted Cow Coffeehouse to employ people with disabilities. The websites for both the coffee shop and the farm are littered with market-based terms and a call to self-sufficiency and entrepreneurship. 57 The people that the farm serves are referred to as "clients." The coffeehouse declares that its "goal is to enrich workers' lives by empowering them to learn about coffee origins, products, and how it is prepared." 58 Though this does not appear to be the case at the Spotted Cow, it is worth noting that many employers who hire people with disabilities are able to pay them below the minimum wage. 59

The emphasis on employment and "pre-vocational" services at Downsize farm and other organizations that offer services is in keeping with the trend toward pushing "personal responsibility" in social services as well as to the imperative for productivity of those with disabilities. In Ohio, prioritizing employment for people with disabilities is an official state policy enacted under former Governor John Kasich. 60 This turn to employment for people with developmental disabilities should be understood in the context of the centrality of disability as a category for the provision of welfare. Deborah Stone has demonstrated that disability became a key category of the welfare state in order to resolve the distributive dilemma of industrial capitalism. People clinically certified as disabled were deemed deserving of welfare. More generally, as Stone notes, the "concept of disability embodied in the administrative category represents a politically fashioned compromise at any given time and place about the legitimate claims to social aid" (1984, 27). The turn toward prioritizing vocational and employment-based services for people with disabilities reflects the contemporary ethos of individual responsibility. Public welfare is increasingly tied to employment and "work opportunities."

In fact, many PRENDA supporters highlighted the productivity of people with Down syndrome. 61 For example, Merrin, the sponsor of the Ohio House bill, testified that: "Many individuals with Down syndrome are healthy, productive, employed, and integral members of society." 62 The 2019 AUL legislative guide includes in its findings for the Prenatal Nondiscrimination Act that many people with Down syndrome or other "physical or mental deformities … are able to support themselves financially, obtain an education, and live independently." Moreover, "as technology advances and as medical treatments and educational methods improve" such people "will increasingly be self-dependent and productive citizens" (2019, 319). The focus on independence and productivity here and in legislative debates justifies states' lack of funding for support services for people with disabilities. It also reinforces the idea that disability is primarily a medical condition, marked by "deformities" to which the best answer is innovation in medicine, not a change in social structures. This line of thinking would support further cuts to support for people with disabilities who are employed.

Conclusion: Neoliberalism and Conservative Identity Politics

This discussion illustrates how the issue of disability-selective abortion plays very well into most PRENDA supporters' overall social conservative worldview, which in turn often furthers neoliberalism. PRENDA advocates who also support cuts to Medicaid and other public services place primary responsibility for the support of people with disabilities on the family and faith-based charity. This illuminates, then, how faith and social conservatism can fuel the re-regulation of corporate and individual responsibility that often marks the privatization of medicine. It also shows how the social conservative focus on saving a marginalized, presumptively innocent group of people distracts from issues of political economy and public support. 63

In The Twilight of Equality Lisa Duggan discusses how conservatives have strategically targeted progressive, identity-based movements to justify neoliberal reforms that shrink public services and institutions. For example, in 1997 conservatives attacked a radical sex-positive conference at SUNY New Paltz, and this fueled efforts "to downsize or eliminate public institutions, in the name of cutting business taxes and creating a more pro-business climate in the state" (2003, 31). The perception that economic issues are separate from the "culture wars" obscures how backlash to cultural movements is tied to neoliberal economic reforms.

The logic and context of PRENDAs, however, offer a twist on this dynamic. Rather than presenting themselves as a reaction to identity politics and questions of oppression, PRENDA supporters adopt the language of oppression and identity in a way that furthers neoliberalism. That is, lawmakers who advocate for PRENDAs espouse a concern for the most vulnerable instead of just maligning left social movements and causes. Yet the way they invoke this language and the purpose for which they wield it, separates the question of identity and cultural values, on the one hand, from questions of economics, corporate power, and the distribution of resources, on the other. PRENDAs offer an example of how social conservative family values and neoliberalism can work in tandem to distract from the material inequalities that capitalism and institutional sexism, racism, and ableism produce. Making PRENDAs a legislative priority both offers an opportunity to malign calls for reproductive freedom and enables conservative lawmakers to look like they are doing something for the most marginalized. While the social conservative response claims to protect the most vulnerable and innocent, it offers no collective political vision or mandate. 64 Family values manifest as punishment and prohibition directed primarily at women.

This critique of PRENDAs illustrates the danger inherent when the most prominent voices discussing prenatal testing are doing so as part of an effort to prohibit all abortion. The very terms of state debates often obscure the political and economic questions concerning the prenatal testing industry and social services funding. The fact that researchers have used "non-invasive sequencing to read a whole fetal genome" (Hayden 2012, 454)—which could provide parents with a host of medical and non-medical information about fetuses—underscores the importance of a more robust political and public discussion about this emerging technology. As Roberts imagines, we could create "a new utopia arising from feminists' radical resistance to enlisting women as genetic screeners in service of a neoliberal agenda, a resistance that is emboldened by new alliances—joining reproductive justice with antiracist, disability rights, and economic justice movements that recognize their common interest in contesting a race-based reprogenetic future" (2009, 800).


I would like to thank Susanne Beechey, Amber Knight, and the anonymous reviewers for their insightful comments on earlier drafts of this manuscript. Katrine Padilla and Abibat Rahman-Davies provided invaluable research assistance. A Cal Poly Research, Scholarly, and Creative Grant supported this research.


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  • Van den Daele, Wolfgang. 2006. "The Spectre of Coercion: Is Public Health Genetics the Route to Policies of Enforced Disease Prevention?" Community Genetics 9(1):40–49. https://doi.org/10.1159/000090692
  • White, M.T. 1999. "Making responsible decisions: an interpretive ethic for genetic decisionmaking." Hastings Center Report 29:14-21. https://doi.org/10.2307/3528534

State Legislative Records


  1. Indiana House Enrolled Act No. 1337 (2016).
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  2. Box v. Planned Parenthood of Indiana and Kentucky, Inc. 587 U.S. ____ (2019), slip opinion, p. 20.
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  3. Box v. Planned Parenthood of Indiana and Kentucky, Inc. 587 U.S. ____ (2019), slip opinion, p. 20.
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  4. Each state has a different public archive system. I extensively reviewed each state's public archive and analyzed all floor debates and committee hearings in which a disability PRENDA was discussed.
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  5. For example, Adrienne Asch argues "that most of the problems associated with having a disability stem from discriminatory social arrangements that are changeable," (1999, 1650) yet the ideal society she seems to favor is one in which industries would cater to the "'market of millions of children and tens of millions of adults'" with disabilities (Gliedman and Roth quoted in Asch 1999, 1656). This vision takes for granted the compatibility of profit-driven industry and a just society.
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  6. I thus disagree sharply with Sharp and Earle's (2002) argument that the feminist and disability movements have irreconcilable differences. Their argument relies on an oversimplification and mischaracterization of feminist support for abortion as a matter of liberal rights and choice when in fact feminist arguments increasingly prioritize reproductive justice and include an awareness of structural inequalities. In fact, activist organization Generations Ahead has provided an example of how disability and reproductive rights advocates can work together. See Roberts and Jesudason (2013).
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  7. This is especially important to do when we consider the transnational and intersectional aspects of the antiabortion movement. Carol Mason has shown how progressive rhetoric is "used to foster right-wing politics by way of, and beyond, the fight over abortion" (2019, 665) and calls for more attention to the transnational and intersectional elements of anti-abortion efforts. Attention to how disability intersects with gender, race, and class in the context of disability PRENDAs and prenatal testing reveals an important element of antiabortion work in the United States that may be exported to other countries and that must be confronted domestically.
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  8. Ohio Revised Code, Section 2919.10.
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  9. North Dakota Century Code 14-02. 1-02.
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  10. Louisiana Rev. Stat. Ann. § 40:1061.1.2 (B).
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  11. See Cromer (2019) for more on how advocates for fetal personhood present themselves as part of movements for racial justice.
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  12. Indiana Senate Health and Provider Services Committee. 2016. Video. Jan. 27. http://iga.in.gov/information/archives/2016/video/committee_health_and_provider_services_3900/
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  13. Indiana House. 2016. Video. March 9. http://iga.in.gov/information/archives/2016/video/house/
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  14. Koehler, Jessica. 2017. Ohio House Bill 214 House Health Committee Testimony. Sept. 19. https://www.legislature.ohio.gov/legislation/legislation-committee-documents?id=GA132-HB-214
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  15. Barry Sheets, a legislative consultant for the Right to Life Action Coalition of Ohio, implored representatives to "stand together to uphold protections for defenseless unborn life." Sheets, Barry. 2017. Ohio House Bill 214 House Health Committee Testimony. Sept. 20. https://www.legislature.ohio.gov/legislation/legislation-committee-documents?id=GA132-HB-214
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  16. Louisiana House Health and Welfare Committee, 4/20.
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  17. Gill, Susan. 2017. Ohio House Bill 214 House Health Committee Testimony. Sept. 20. https://www.legislature.ohio.gov/legislation/legislation-committee-documents?id=GA132-HB-214.
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  18. LaTourette, Sarah. 2017. Ohio House Bill 214 House Health Committee Testimony. Sept. 13. https://www.legislature.ohio.gov/legislation/legislation-committee-documents?id=GA132-HB-214. See Kluchin (2011) for an in-depth discussion of the notion of fitness in the eugenics movement.
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  19. Merrin, Derek. 2017. Ohio House Bill 214 House Health Committee Testimony. Sept. 13. https://www.legislature.ohio.gov/legislation/legislation-committee-documents?id=GA132-HB-214
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  20. North Dakota House Human Services Standing Committee. 2013. HB 1305 Minutes, p. 24. Jan. 22. https://www.legis.nd.gov/files/resource/63-2013/library/hb1305.pdf
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  21. Indiana Senate Health and Provider Services Committee. 2016. Video. Jan. 27. http://iga.in.gov/information/archives/2016/video/committee_health_and_provider_services_3900
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  22. There is tension here between the selfish woman idea that emerged at times in the legislative debates and the statute's rendering of women as victims. The deliberate decision of many in the pro-life movement to present themselves as more compassionate toward women partly explains this divergence. More theoretically, this tension perhaps reveals the paradoxical character of this turn in pro-life campaigns. On the one hand, women should be primarily responsible for the consequences of their sexual and reproductive actions. Kristin Luker (1984) demonstrated that this was a key component of how many pro-life activists in the 1980s conceived of what it meant to be responsible for your procreative decisions. On the other hand, women are not ultimately responsible for their sexual and reproductive actions and lack agency in the absence of legislative "protection."
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  23. Roach, Jessica. 2017. Ohio House Bill 214 House Health Committee Testimony. Oct. 25. https://www.legislature.ohio.gov/legislation/legislation-committee-documents?id=GA132-HB-214
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  24. North Dakota House Human Services Standing Committee. 2013. HB 1305 Minutes, p. 31. Jan. 22. https://www.legis.nd.gov/files/resource/63-2013/library/hb1305.pdf
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  25. Brown, Josh. 2017. Ohio House Bill 214 House Health Committee Testimony. Sept. 20. https://www.legislature.ohio.gov/legislation/legislation-committee-documents?id=GA132-HB-214
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  26. Indiana Senate Health and Provider Services Committee. 2016. Video. Feb. 24. http://iga.in.gov/information/archives/2016/video/committee_health_and_provider_services_3900/
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  27. North Dakota House Human Services Standing Committee. 2013. HB 1305 Minutes, pp.4-5. Jan. 22. https://www.legis.nd.gov/files/resource/63-2013/library/hb1305.pdf
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  28. This echoes many of the responses that Piepmeier (2013) received after writing about her decision to forego amniocentesis and giving birth to a daughter with Down syndrome.
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  29. In fact, Nodland, although neutral on the PRENDA bill, is "grateful" for the fact that it is opening a discussion.
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  30. North Dakota House Human Services Standing Committee. 2013. HB 1305 Minutes, p. 25. Jan. 22. https://www.legis.nd.gov/files/resource/63-2013/library/hb1305.pdf
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  31. 1986. The Tentative Pregnancy: Prenatal Diagnosis and the Future of Motherhood. New York: Viking Press, p. 218.
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  32. An exception is Chris Kaposy's (2018) excellent discussion of capitalism and NIPTs.
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  33. Marsha Saxton summarizes disability scholars' critiques: "[The disability community] believe[s] that the current promotion and application of prenatal screening has a potent message that negatively affects people with disabilities, influences women in decision making about their own pregnancies, and reinforces the general public's stereotyped attitudes about people with disabilities" (2000, 148).
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  34. For example, Chris Kaposy favors regulatory reforms to address the bias against people with disabilities that he argues often motivates prenatal testing and selective abortion. Yet Kaposy does not centrally grapple with questions of political economy, instead merely noting that reforms would have to confront "practice guidelines that require offering prenatal testing to all pregnant women, and potential negligence liability for not doing so" (2013, 320).
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  35. Some commentators note that a more accurate term would be non-invasive prenatal screening since the technique is not strictly speaking diagnostic.
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  36. The amount is in FY 1991 dollars. See National Human Genome Research Institute 2010.
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  37. In advocating for the HGP, James Watson (former Head of the HGP at the National Institutes of Health) foregrounded the "hope" that more knowledge on genetics would be of utility for "antenatal diagnostic procedures" (quoted in Asch 1999, 1651).
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  38. Although several studies demonstrate high accuracy of the tests, many of those studies were either directly funded by corporations that developed the test under study or conducted by employees or others with close ties to the industry. Also, many of the studies limit their analysis to those who are at high risk for carrying a fetus with Down syndrome. See Palomaki, et al (2011), Ehrich et al. (2011), Norton et al. (2012), Sparks et al. (2012).
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  39. https://www.amp.org/advocacy/position-statements-letters/perfect-storm/
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  40. Harmony is not currently available in the United States as a result of a patent lawsuit.
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  41. https://www.amp.org/
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  42. https://www.newswise.com//articles/amp-appoints-mary-steele-williams-to-position-of-executive-director
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  43. HR 3441, 114th Congress (2015-2016), https://www.congress.gov/bill/114th-congress/house-bill/3441/text
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  44. https://www.perinatalquality.org/AboutUs.aspx
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  45. As Asch and David Wasserman (2005) argue, a common reason for seeking selective abortion relies on stereotyping and taking one characteristic of a potential person to understand the totality of that person.
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  46. See also Skotko (2005) and Rapp (1999) on the medical personnel's judgements of parents who received a Down syndrome diagnosis after birth. Even when professionals provide nondirective counseling, it may not address the needs and concerns of prospective parents (Caplan 1993; White 1999).
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  47. Louisiana House Health and Welfare Committee, 4/20.
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  48. The economic incentives of genetic counselors, who are supposed to provide nondirective counseling, may also play a role in pushing prenatal testing because of the way costs are allocated in medical institutions. Press (2000) points out that salaries for genetic counselors often have to be paid through billing for the medical procedures to which counseling leads.
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  49. The fact that some medical professional organizations like the AMA as well as commentaries in medical journals (see Lockwood 2017) perpetuate the myth of a medical malpractice crisis heightens fears of liability. See also Palmisano (2005), a former president of the AMA, penned an article perpetuating the myth of a liability crisis and blaming personal injury lawyers for preventing meaningful reform.
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  50. As Deborah Pergament and Katie Ilijic argue, "concerns about liability regularly guide clinical activities intended to facilitate informed decision-making by patients" (2014, 1442).
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  51. This is similar to what Roxanne Mykitiuk (2000) describes as "re-regulation."
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  52. Louisiana House Health and Welfare Committee, 4/20
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  53. For example, many Democratic Indiana lawmakers offered amendments to the state's PRENDA bill that would have increased funding for social services. They failed to garner much support, with PRENDA supporters asserting the adequacy of state funding, despite evidence to the contrary.
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  54. They are not completely against government spending, though. Significantly, they are willing to have the state pay to defend PRENDAs in the courts.
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  55. https://www.kff.org/medicaid/issue-brief/data-note-data-do-not-support-relationship-medicaid-expansion-hcbs-waiver-waiting-lists/
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  56. https://www.downsizefarm.com/
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  57. Also noteworthy is the way the website explains the peculiar origin for the name of the farm: "Downsize Farm would be a great place for [the Custers'] two sons, Levi and Eric, to look at life through their distinct trademark Down Syndrome eyes (Down's-eyes)." https://www.downsizefarm.com/
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  58. http://www.spottedcowcoffeehouse.com/mission.html
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  59. https://www.dol.gov/whd/regs/compliance/whdfs39.pdf
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  60. Governor, State of Ohio, Executive Order 2012-05K
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  61. However, state records reveal that some PRENDA supporters pushed back against the idea that the value of people with disabilities was tied to their employment prospects and productivity. For example, Bob Ryan, a parent of a child with Down syndrome in Ohio, testified: "Megan may not be the most productive member of our society based on today's societal measures, but she will certainly add value to today's world." Ryan, Bob. 2017. Ohio House Bill 214 House Health Committee Testimony. Sept. 20. https://www.legislature.ohio.gov/legislation/legislation-committee-documents?id=GA132-HB-214.
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  62. Merrin, Derek. 2017. Ohio House Bill 214 House Health Committee Testimony. Sept. 13. https://www.legislature.ohio.gov/legislation/legislation-committee-documents?id=GA132-HB-214
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  63. As Eve Feder Kittay argues, focusing on selective abortion "direct[s] us away from acts that are most egregiously expressive of [the devaluation of the life of the disabled]," which is "expresse[d] over and over again in the failure of society to provide adequately for the disabled and their families" (2000, 181).
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  64. Instead, family values can be taken as a kind of corrective or response to the excesses of the market. See David Harvey (2005) on how the rise of neoconservatism can be understood as a response to the contradictions of neoliberalism. See Denbow (2017) for a discussion of this dynamic as it relates to the issue of reproduction in the Supreme Court's Hobby Lobby decision.
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