Noninvasive Prenatal Testing: Helpful Test or Abortion-Enabler?
The regulation, abortion data, and societal debate related to noninvasive prenatal testing in Missouri and England
Kelly Schubert
Thesis in Candidacy for a Master of Science in Political Science Track: International Relations
Graduate School of Social Sciences University of Amsterdam
June 2020
Supervisor: Dr. A.M.C. Loeber Second reader: Dr. J. Grin
Abstract
Noninvasive prenatal testing (NIPT) is a new form of prenatal testing which allows for low risk testing of fetuses for a variety of conditions such as Down syndrome. Due to the low risk nature and high level of accuracy, which separates NIPT from older technologies of prenatal testing, more pregnant people are turning toward such testing. However, media sources point out that an increase in NIPT is fostering a similar increase in Down syndrome pregnancy terminations in countries such as Denmark and Iceland. This thesis will explore this phenomenon in two cases from 2008-2017: Missouri, which is historically restrictive in abortion legislation, and England, which is historically lenient in abortion legislation. NIPT’s assumed observable influence on abortion rates will be explored empirically via abortion data as well as in the context of proposed legislation, testing accessibility, and the societal
conversation surrounding NIPT. Current literature focuses on the unfair stigmatization of Down syndrome as well as the ethical implications of NIPT. The findings presented in this research show that cases where NIPT is introduced along with restrictive proposed legislation related to it experience a decrease in abortion rates after the introduction, along with a
societal debate that is not concerned with NIPT’s relationship with abortion. In cases where NIPT is introduced along with lenient proposed legislation, the opposite is true as abortion rates rise and the public is deeply against NIPT’s correspondence with increased abortion rates.
Acknowledgements
Special thanks to my mom, dad, brother, and dog for continually supporting me, listening to me, and working through ideas with me throughout my academic journey. I’d also like to thank my boyfriend for always encouraging me and providing me words of wisdom in times of need. Lastly, I’d like to thank the supervisor of this thesis, Anne, for providing much-needed guidance throughout this research project.
Table of Contents Abstract ___________________________________________________________________ 2 Acknowledgements __________________________________________________________ 3 Table of Contents ___________________________________________________________ 4 List of Figures ______________________________________________________________ 5 Chapter 1: Introduction _______________________________________________________ 6 1.1 Motivation ___________________________________________________________ 8 1.2 Overview ____________________________________________________________ 9 Chapter 2: Developments in Prenatal Technology: Testing and Termination ____________ 11 2.1 Prenatal Testing _____________________________________________________ 11 2.2 Ethical and Social Debates _____________________________________________ 12 2.3 Abortion Regulation __________________________________________________ 13 Chapter 3: Theory __________________________________________________________ 15 3.1 Science and New Technology in Public Policy _____________________________ 15 3.2 Role of Expertise _____________________________________________________ 16 Chapter 4: Methodology _____________________________________________________ 19 4.1 Case Selection _______________________________________________________ 19 4.2 Research Design and Theory ___________________________________________ 20 4.3 Data Collection and Analysis ___________________________________________ 20 Chapter 5: Missouri _________________________________________________________ 24 5.1 Introduction and Regulation of NIPT _____________________________________ 24 5.2 Abortion ___________________________________________________________ 27 5.3 Societal Debate ______________________________________________________ 30 5.4 Summary ___________________________________________________________ 35 Chapter 6: England _________________________________________________________ 37 6.1 Introduction and Regulation of NIPT _____________________________________ 37 6.2 Abortion ___________________________________________________________ 39 5.3 Societal Debate ______________________________________________________ 42 5.4 Summary ___________________________________________________________ 47 Chapter 7: Analysis _________________________________________________________ 49 Chapter 8: Conclusion _______________________________________________________ 53 Bibliography ______________________________________________________________ 55
List of Figures
Figure 1. Abortion Rates in Missouri Over Time __________________________________ 28 Figure 2. Abortion Ratios in Missouri Over Time _________________________________ 29 Figure 3. Searches on Google in Missouri Over Time (2008-2012) ___________________ 31 Figure 4. Searches on Google in Missouri Over Time (2013-2017) ___________________ 32 Figure 5. Frequency of Articles Regarding Prenatal Testing (Missouri) ________________ 34 Figure 6. Total Number of Abortions Received by Resident Women (England) __________ 40 Figure 7. Abortion Rate in Women Ages 15-44 (England) __________________________ 41 Figure 8. Abortions Performed under Ground E (England) __________________________ 42 Figure 9. Google Searches in England Over Time (2008-2012) ______________________ 43 Figure 10. Google Searches in England Over Time (2013-2017) _____________________ 44 Figure 11. Frequency of Articles Regarding Prenatal Testing (England) _______________ 45
Chapter 1: Introduction
News sources report the dwindling number of children born with Down syndrome in countries such as Iceland, with some news sources referring to the increasing rate of abortion for fetuses with Down syndrome as a form of genocide (Will 2018). Such reports attribute an increase in Down syndrome abortions to the introduction of a new form of prenatal testing, often called noninvasive prenatal testing (NIPT) (Lindeman 2015). The specialization of noninvasive prenatal testing (NIPT) allows it to test for Trisomy 21 (Down syndrome), Trisomy 18 (Edwards syndrome), Trisomy 13 (Patau syndrome), as well as sex chromosome number anomalies (The Hastings Center 2020; U.S. National Library of Medicine 2020). Individuals are quick to point to European countries such as Denmark and Iceland as hallmark examples in which NIPT results rapidly heighten the likelihood that a healthcare professional encourages abortion upon a Down syndrome diagnosis – critics note that babies born with Down syndrome are in rapid decline in these countries (Lindeman 2015). As such reports proliferate in number, so does accessibility to NIPT throughout many parts of the world such as the United States of America (U.S.A.) and the United Kingdom of Great Britain and Northern Ireland (U.K.) (Allyse et al. 2015). Accordingly, the media is calling upon governments to address NIPT in light of abortion through the form of legislation especially in the U.K. (Macfarlane 2015).
As media sources populate their sites with publications protesting NIPT across the globe, this is met with the following question: What is NIPT and why is it so much different than prior prenatal tests? After all, the safety of mothers and their children throughout pregnancy has become safer as maternal mortality has decreased greatly, particularly since 1990 (Roser and Ritchie 2020). NIPT is now being offered to many pregnant women globally, and healthcare providers are recommending the test to more and more women. Further, NIPT joins the lines of several other prenatal tests such as amniocentesis and chronic villus sampling (CVS) (The Hastings Center 2020). The differences between those tests and NIPT are that NIPT is much more noninvasive, carrying a lower risk of miscarriage, and can screen for the likelihood that a fetus has a congenital anomaly earlier in pregnancy than other tests (The Hastings Center 2020). In fact, NIPT is performed between 8-12 weeks’ gestation and is highly accurate despite its noninvasive nature of testing (The Hastings Center 2020; Taylor-Phillips et al. 2016).
However, the debate surrounding abortion is not settled either. While legislation in the U.S.A. varies among different states, legislation in Missouri regarding abortion is actively
being proposed by policymakers (Guttmacher Institute 2020b). In fact, there has been a recent uptick in the proposed legislation against abortion under the guise anti-discriminatory policies on the basis of prenatal test results (Missouri House of Representatives 2020). As this thesis shows, such legislation has only been proposed after the introduction of NIPT. Despite failed pushes by policymakers in Missouri in banning abortion, this thesis illustrates that there is an observable decrease in the number of abortions that are taking place in the state. Therefore, pushes in policy are being made seemingly without abortion rates to support these policies. Conversely, this tale sees a completely different story in England. Specifically, legislation in England regarding abortion has not seen any changes in light of NIPT, let alone in the past 50 years (Abortion Act 1967 (c. 87) (as amended); Howard 2017). Yet, this thesis illustrates that abortion rates are indeed on the rise since the introduction of NIPT. Thus, Missouri and England are at opposite ends of the spectrum in regard to both their legislation surrounding NIPT and abortion rates thereafter.
While media sources paint the relationship between NIPT and abortion as quite straightforward in light of the results seen in Denmark and Iceland (Will 2018; Lindeman 2015), this thesis will explore this relationship in an exploratory manner. In order to investigate this relationship, this case will be evaluated in both Missouri and England.
Further, there are mediating factors which pertain to NIPT and abortion, specifically pointing to the societal debate surrounding this relationship. As this research indicates, political theorists remark upon the absence of public opinion and values in policy development (Parker et al. 2014; Jackson et al. 2005). Though political theory points to the extensive role that expertise plays in the development of policy (Jones et al. 2017), these theories often ignore the role of the prominent role of the public within policy development. Beyond theory alone, this thesis will also unpack the role of public engagement in healthcare and will explore this factor in the specific case surrounding NIPT and abortion in England and Missouri. In light of this, the societal conversation regarding NIPT and abortion will be explored through the lens of internet search trends, news publications, and the voice of Down syndrome advocacy groups. Thus, the main research question which guides this thesis is as follows:
“To which extent does the way in which NIPT was introduced and regulated come to bear on abortion rates and the societal debate surrounding NIPT?”
This question will be answered by exploring two states – Missouri in the U.S.A. and England in the U.K. – and the way in which NIPT has been introduced and regulated in those
places. Chapter 2 elaborates on the selection of England and Missouri as the empirical cases analyzed in this thesis. In answering the main research question, this thesis reconstructs the process with which NIPT was put forth in each of these states. Thus, the first sub-question to guide each case analysis is:
1. When and how was NIPT introduced in each of the selected states, and how was its introduction and accessibility for prospective users organized and regulated? In order to draw inferences about the possible relationship between the way in which NIPT was introduced along with changes in abortion rates, analysis of each case will be guided by a second sub-question:
2. What are the abortion rates in each case, and are there variations in these rates throughout 2008-2017 (which encapsulates approximately 5 years preceding and 5 years following the introduction of NIPT in both Missouri and England) in either case?
As face value impressions of a seeming correlation provide no basis for drawing inferences about a potential cause-effect relationship, this thesis develops a ground for reasoning over the plausibility of the relationship between the introduction of NIPT and any variations in abortion rates by looking at the societal conversation surrounding this topic. To that end, this poses a third and final sub-question:
3. How do key societal members – the public at large, news sources, and Down syndrome advocacy groups – view NIPT given the regulation of such testing and corresponding abortion rates?
Each of these sub-questions requires a different method of analysis which is discussed in Chapter 4. On the basis of the answers to each of these sub-questions in combination with one another, this thesis is able to build an understanding of a seeming correlation between NIPT and abortion in light of its regulation and societal deliberation.
1.1 Motivation
This thesis is motivated by several factors, both scientific and societal. The objective of this research project is to explore the way in which NIPT, a new technology, influences abortion rates and the way in which this influence can be understood through the societal debate and regulation of NIPT. In fact, this thesis aims to understand the puzzle of whether the press over increased Down syndrome baby abortions after NIPT results in Iceland and Denmark is indeed the reality in other cases, specifically that of Missouri and England. Scientifically, this is relevant by the manner in which this thesis evaluates the aforementioned
puzzle. Namely, by integrating the view of the public into the discussion relating NIPT and abortion. While the public comments on this subject, scholars tend to focus on NIPT via abortion from the position of ethics, as Skotko (2009) does. Further, theorists in health policy note the importance of broad engagement of a variety of actors, including the public, in the development of public policy (Parker et al. 2014; Jackson et al. 2005). This thesis makes sense of the apparent correlation between NIPT and abortion using public contribution. Therefore, this makes sense of NIPT’s relationship to abortion in a new way. In measuring the voice of the public, this evaluation uses three criteria: internet search data, local news article publications, and standpoint of a Down syndrome advocacy group.
This thesis is relevant to society in that it explores concerns over an unfair stigmatization of Down syndrome (Caplan 2015). Within concerns over the stigma
surrounding Down syndrome, this has not been explored in the context of NIPT in the way which this thesis explores this relationship. To be specific, societal discussions surrounding Down syndrome stigmatization in the context of NIPT typically focus on areas where the incidence of increased Down syndrome termination is highly correlated with the introduction of such testing. However, this focus often does not go beyond cases where this correlation is high. In this thesis, this exploration will focus on whether this relationship exists in less-reported cases, Missouri and England, where NIPT is also available. This way, an
understanding can be developed that the stigmatization of Down syndrome is not the same in all areas where NIPT is available. As the findings of this research indicate, the societal
conversation surrounding NIPT, especially that of Down syndrome advocacy groups, is much more positive in Missouri than in England. Further, the differences in abortion rates between the two cases indicate that stigmatization is experienced differently as well.
1.2 Overview
This thesis will begin with an overview of prenatal technology discussing current literature to aid in the understanding of NIPT as well as abortion; using this method, the relationship between the two can be put into a greater context by showing how NIPT differs from previous technology, the ethical considerations that currently contribute to the societal conversation on the stigmatization of Down syndrome, as well as work understanding the governance of abortion. Following this, there will be an overview of relevant theory, which integrates the role of new technology and governance as well as the interplay between public health and governance. This overview on theory reinforces the importance of using the societal debate as a way to make sense of the relationship between NIPT and abortion. Subsequently, there will be a discussion regarding the methodology for research throughout
this project, including an overview of case selection and theory development. Finally, the case of Missouri will be presented followed by the case of England. Within each case, the sub-questions outlined previously will be evaluated in order to answer the main research question. Following the analysis of each case separately, a discussion of both cases will be presented along with conclusions that can be derived.
Chapter 2: Developments in Prenatal Technology: Testing and Termination 2.1 Prenatal Testing
Prenatal screening has been an option for expectant mothers for quite some time. Prior to the 1970s, the primary screening methods included chronic villus sampling (CVS) and amniocentesis, which is quite invasive and carries certain risks (Todros et al. 2001). However, these options have expanded since 1980. One of the most recent technologies to exist is NIPT, which was originally introduced in the U.S.A. in 2011 and has steadily become available in a slew of other countries (Minear et al. 2015). Thus, NIPT now exists along with a myriad of methods that can be used to detect the likelihood of certain congenital anomalies, which include ultrasounds, various biochemical tests, and other previously mentioned
methods (Harstall 2012). This form of prenatal screening has been gaining traction as it is relatively safe for all parties, has a high degree of accuracy – nearly 99% in many cases – and is available for use quite early on in pregnancy, typically 8-12 weeks’ gestation (Minear et al. 2015; Taylor-Phillips et al. 2016). A crucial aspect of this technology is the ability to test for Trisomy 21 (Down syndrome), Trisomy 18 (Edwards syndrome), Trisomy 13 (Patau
syndrome), as well as sex chromosome number anomalies at an early stage (The Hastings Center 2020; U.S. National Library of Medicine 2020).
Collectively, the conditions for which NIPT indicates a likelihood of diagnosis can all be classified as an aneuploidy, in which there may be chromosomes that are missing or extra chromosomes depending on the case at hand (Rose and Mercer 2016). In the words of Rose and Mercer (2016, p.e123), “because each chromosome consists of hundreds of genes, the loss or gain of large chromosomal segments disrupts significant amounts of genetic material and often results in a nonviable pregnancy or offspring that may not survive after birth. In the case of a surviving newborn, congenital birth defects; failure to thrive; and functional
abnormalities, including mild-to-severe intellectual disability, infertility, and shortened lifespan, may occur.” As a result, there is a wide array of factors to consider when
aneuploidy, such as those where NIPT assesses a risk factor, are being evaluated. Many more women are offered NIPT early on in pregnancy and use the information gathered from their test results to make decisions on the future of their pregnancy (Schendel et al. 2016). In response to these dialogues over what NIPT is and especially what its results indicate, this thesis indicates that the relationship between NIPT and pregnancy termination rates seems to be different depending on the regulation of such testing, as this varies between Missouri and England. Thus, regulation and the public deliberation of NIPT has a more observable effect on abortion rates than what NIPT is alone.
2.2 Ethical and Social Debates
Currently, there are quite a few academic debates regarding prenatal screening and abortion. As this thesis argues, states in which NIPT is met with heavy regulation – as is the case in Missouri – especially with relation to abortion, see a decrease in abortion rates after NIPT’s introduction, while lenient cases like that of England see an opposite assumed observable impact. There is quite a bit of concern that NIPT, and similar prenatal screening which detect the risk that an individual will have a child with Down syndrome, will lead to the eradication of individuals with Down syndrome (Skotko 2009). This has led to quite a few discussions on the ethics of such technology, as opponents of such genetic testing often cite concerns that “Down syndrome has been unfairly stigmatized” (Caplan 2015). As doctors and genetic counselors meet with expectant parents, they are instructed to give a strictly neutral position regarding ethics in genetic testing for congenital abnormalities (Caplan 2015). Yet, there is controversy surrounding the possibility for genetic counselors and doctors to remain neutral when discussing options (Caplan 2015). However, as the scientific community notes, it is imperative that pregnant patients are making informed choices (Rose and Mercer 2016). The research presented in this study suggests that stigmatization is not equal in Missouri and England, as both abortion rates and public response have met NIPT in varying ways in either case. Further, both the public outcry over NIPT and termination rates after its introduction shows a much greater assumed observable effect in England than in Missouri where the opposite remains true.
The academic research that is currently being released lacks publications regarding the way in which the societal debate surrounding NIPT and abortion can make sense of NIPT’s influence on abortion rates in Missouri and England. There is, however, extensive coverage regarding the ethical and social implications of prenatal genetic screening in the academic world and throughout other forms of media. Such academic literature typically discusses such social implications in one dimension, such as prenatal testing alone on a general basis, as opposed to several dimensions of regulation, abortion, and societal
conversation altogether as this thesis explores. Asch (1999) remarks that policymakers should reconsider legislation regarding prenatal testing, citing concerns that life satisfaction, which in this study includes access to “stimulation, love, companionship, pride, and pleasure” (p. 1654) are not correlated in a positive nor negative fashion in individuals with a Down
syndrome diagnosis. While this study was published over 20 years ago, it remains relevant as it illustrates an early contribution to the debate surrounding regulation, specifically proposed
(2015) that Down syndrome has a stigma surrounding it which policymakers do not consider when developing proposed legislation. As this thesis shows, NIPT has ignited this debate in an even greater way in England and also somewhat so in Missouri. Further, Graham (2018) notes that those who are expecting a child face an immense deal of pressure – through a combination of societal actors who are incredibly opposed to such testing and abortions, legal issues if they would seek abortion, the information given to them regarding Down syndrome by doctors, and their own wishes. Balancing all factors is quite a challenge, and the debate surrounding abortion is making it even more difficult for them. Additionally, there is quite a bit of existing literature that is based on “gendercide,” in which expectant individuals terminate pregnancies based on the knowledge that they are expecting a girl, rather than a boy (Purewal and Eklund 2018). While looking at gendercide in abortion and politics is certainly compelling, it is a widely covered topic on its own and is beyond the scope of this research project. Further, Olarte Sierra (2010) published a PhD thesis discussing the
relationship between discrimination and amniocentesis, which is a somewhat similar topic. However, this thesis expands upon the relationship between discrimination and amniocentesis by bringing the focus on differences in the relationship between NIPT’s regulation and
abortion rates, using the societal debate to make sense of this relationship. This way, this thesis shows that there is not always a linear relationship where NIPT leads to increased abortions and therefore discriminates against those with Down syndrome or other congenital abnormalities.
2.3 Abortion Regulation
Based on the information available, there is quite a bit of published research regarding the governance of abortion on a general basis. However, as seen below this research does not focus on the regulation of NIPT with relation to abortion rates using the societal conversation as a mechanism to understand this relationship. Conti et al. (2016) describe that restricting or criminalizing abortion does not correlate with decreased abortion rates, instead those who seek abortions often turn to unsafe, unregulated providers of abortion which end up harming individuals more. As shown in the case of Missouri, those who seek abortions source them from providers who will provide them, even if they must travel outside of their state in order to receive abortions. Grimes et al. (2006) note that unsafe, illegal abortions primarily impact those in developing countries. However, this does not mean that illegal, unsafe abortions do not take place in the U.S.A. and England. While there are quite a few databases and scholars alike that frequently publish abortion data (Jones and Jerman 2017; Jones et al. 2018), unfortunately the data surrounding illegal abortions is lacking for this study. Further studies
making sense of the way in which NIPT’s introduction and regulation comes to bear on abortion rates and the related societal discussion can be strengthened if such data becomes available. Overall, for those individuals that do seek abortion following the diagnosis of an aneuploidy, there is much more opposition in Missouri than in England.
Another factor to consider is the information that is being distributed to patients who are indeed seeking abortions, as this relates to the regulation of abortion and may require results similar to NIPT. Throughout the U.S.A., there is varied information given to patients that are expecting. Specifically, those seeking abortions are often faced with information that they may not desire to know regarding their pregnancy, which is known as informed consent, in states where “informed consent statutes” make this a legal requirement (Daniels 2016, p.182). In the case of informed consent, patients seeking an abortion are required to know information regarding their pregnancy. While the required information varies depending on the state or country considered, Missouri’s policies regarding informed consent include patient confirmation that they know of the fetus’ characteristics (both anatomical and physiological), gestational age, had opportunity to hear the heartbeat, and other policies at least 72 hours prior to an abortion (Missouri Department of Health & Senior Services 2020a; Eligon 2014). In contrast to the case of Missouri, England does not have similar
requirements. These informed consent laws likely make the options – which pregnant women weigh when making decisions – much more difficult and compelling, in line with Graham’s (2018) findings. Additionally, women receive information regarding the procedure that they will undergo for the proposed method of abortion (Missouri Department of Health & Senior Services 2020a). What is worse, is that this information is not always correct. In fact, when evaluated for medical accuracy, Daniels (2016) finds that on average (with certain states at much higher rates than others), only one-third of statements distributed to women in U.S.A. states that are so-called “informed consent” states are medically inaccurate. Therefore, the regulation of NIPT and abortion is highly variable, and must be a variable considered in this thesis. Not only this, but the societal response to NIPT is highly important in unpacking the puzzling relationship that NIPT shares with abortion.
Chapter 3: Theory
3.1 Science and New Technology in Public Policy
Some argue that public engagement within public policy development is absolutely essential (Parker et al. 2014). In fact, “the fundamental objective of public engagement should be to enhance the sensitivity of all actors – scientists, policymakers and wider publics alike – to the inherently social, ethical and value-based dimensions of particular problems and policy proposals” (Parker et al. 2014, p.2). Parker et al. (2014) also remark that
government spending on healthcare allows for developments in healthcare which elevate the level of care that patients experience, and that low-cost technologies are a way to improve care levels for patients. Using this understanding, NIPT may be a way for governments to improve the level of patient care that is experienced in their country as is the case in a study done with the National Health Service (NHS) in England (Chitty et al. 2016). In fact, Chapter 6 shows that this argument is used in the societal conversation surrounding NIPT, especially in news publications. Some governments argue, as NHS England does, that NIPT is a low-cost technology that is far less invasive than other methods of prenatal screening such as amniocentesis or chronic villus sampling, and increasing the use of NIPT could afford governments the opportunity to increase their spending on more costly care opportunities for patients that require it (Chitty et al. 2016). In other words, if more individuals use NIPT to test for the likelihood that their fetus has Down syndrome, then only those that have a high likelihood of carrying a baby with Down syndrome will need to undergo the costly, higher-risk, and more invasive procedures such as amniocentesis. In any case, Parker et al. (2014) theorize that these factors are of increasing policy concern and require broad engagement when developing policy solutions. Thus, as this thesis does, evaluating government
regulation of NIPT and the way in which societal actors discuss NIPT, provide a deeper level of understanding of public engagement within NIPT regulation.
Jackson et al. (2005) have developed a model describing the engagement that should occur when developing policy solutions for issues related to science. Within their model, they stress the importance of engaging a wide variety of individuals, from scientists to individuals within the political process as well as members of the public, throughout the policy
development process (Jackson et al. 2005). Within their framework, there is also a discussion regarding upstream and downstream processes wherein Jackson et al. (2005) conclude that policy development is more productive in the downstream if the dialogue among scientists, the public, and decision makers is taking place on a small scale during the development phase of research (which they call the upstream phase). Therefore, this framework strengthens the
understanding that the public, as well as the scientific community, can be involved with the policy process. Specifically, in understanding the way in which NIPT’s regulation comes to bear on abortion rates and the societal debate surrounding NIPT, policymakers should consider the opinion of expectant parents, scientists, and healthcare clinicians when
developing policy to govern such technology. Further, it is essential to involve the thoughts of those directly impacted by a positive Down syndrome diagnosis when developing policy solutions for NIPT. This thesis approaches this understanding from the other way around, instead evaluating how the public has made sense of this technology after its implementation and subsequent regulation.
3.2 Role of Expertise
Jones et al. (2017, p.76) remark upon the relationship between political science and national policy on global health (NPGH) in that they “suggest that political science informs public health researchers' conceptualisation of NPGH as a set of micro-processes in
interactive activities organised by rules where actors exchange resources and exercise power to negotiate decisions within a governing system coordinated at the national level.” Thus, the use of expertise is at the core of many decisions that take place within the domain of politics and healthcare. Jones et al. (2017, p.74) show this in their framework which illustrates the interplay among resources, power, and institutional arrangements as contributing to the response to an action situation. However, this theory lacks the contribution of the public sector, which is a crucial aspect of health policy development. Having said that, it is possible that policymakers overlook public responses when they are setting an agenda. The research presented in this thesis demonstrates this concept. Indeed, in both Missouri and England the societal discussion regarding NIPT is not met with the same volume of action in terms of NIPT’s regulation. While there is a roar of opposition toward NIPT in England, regulation is much less stringent as shown in Chapter 6. The opposite is true in Missouri, as Chapter 5 discusses.
Many theories within policy research focus on the role of expertise. As Scholten and Verbeek (2015) note, expertise alone can be politicized knowledge and research can be used to support policy that has already been determined. Parkhurst et al. (2018, p.vii) explore the role of expertise in health policy, although they also notice that “it is therefore of critical importance to health sector actors to realise that health policy decisions are not placed outside political systems, but rather made within existing political systems and institutional settings.” Going further, they also state that “forms of political contestation around policy problems and
policy responses are formulated and decisions are taken – shape the use of evidence in health policymaking” (Parkhurst et al. 2018, p.223). While their research focuses on the role of expertise within health policy, their findings do have parallels to the relationship between NIPT and abortion. In fact, their theory reinforces the notion that it is imperative to put the issue of NIPT and abortion within the context of the public as well as the institutions that surround these issues. As a result, the use of societal conversation as an avenue to develop an understanding of the impact of NIPT’s introduction and regulation is perfectly suitable, as the third sub-question in this research seeks to understand, since it explores political contestation. Further, this reinforces the importance of understanding NIPT’s regulation within existing settings, which takes the form of understanding regulation prior to NIPT’s introduction in the research presented throughout this thesis. Therefore, it is imperative to understand the
regulation surrounding NIPT as well as the lasting influence on abortion from the context of a policy perspective as well as insurance coverage and in-person availability. Further,
considering the perspective of those with Down syndrome as well as search engine data and news article publications, allows us to understand the view of the public for such issues.
On a broader basis, Cairney’s (2012) complexity theory also shows that political decisions are not isolated elements, so to speak. Changes in policy impact other sectors as well. However, public policy decisions are also influenced by the general public and experts alike, as seen both above and throughout this thesis. The roots of complexity theory go far beyond political science and public policy and can be found in a broad range of issues (Cairney 2012); accordingly, the ideas are prominent in line with NIPT and abortion as well. In fact, “Complexity theory identifies instability and disorder in politics and policy making, and links them to the behaviour of complex systems. It suggests that we shift our analysis from individual parts of a political system to the system as a whole; as a network of elements that interact and combine to produce systemic behavior” (Cairney 2012, p.346). Thus,
examining NIPT, abortion rates, and the corresponding societal conversation surrounding NIPT as an explorative research strategy is an appropriate strategy in uncovering this research puzzle. While each of these factors can be explored separately, Cairney’s (2012) complexity theory shows the importance of understanding each of these factors together as well. Understanding each sub-question in light of the others builds an apt understanding and a robust answer to the overarching, main research question.
Fafard (2015) reviews public health policy research and comes to the understanding that much of the research that relates political science and public health policy ignores key players; the relationship between scientific evidence is not always linearly correlated with
public policy outcomes, as Fafard (2015) finds. To deepen this, Bernier and Clavier (2011, p.113) state that, “the analysis of policy content may extend to actors responsible for policy implementation outside of government whenever they are also part of policy, such as
professional associations, non-governmental organizations or private enterprises involved in and relied upon for a public policy's implementation and governance.” Using this framework emphasizes the importance of expanding analysis beyond the reach of merely the law. As Fafard (2015) as well as Bernier and Clavier (2011) allude to, NIPT is regulated by policy as well as by other factors such as accessibility and cost. Therefore, this thesis will evaluate regulation in a broader sense in order to understand the policy surrounding NIPT. This will include the insurance, availability, recommendation, and legal framework relating to NIPT, which will be discussed in more detail in Chapter 4. Overall, the theory surrounding public health and public policy reinforces the understanding that it is vital to evaluate more than just the experts and policy officers that enact legislation. In order to fully understand the puzzle of the way in which NIPT’s introduction and regulation comes to bear on abortion rates and the societal debate surrounding NIPT, an understanding must be built deeply for each
Chapter 4: Methodology 4.1 Case Selection
The decision to evaluate the state of Missouri and England is based on providing a means for comparison in different environments, as well as to observe whether there are any significant differences between these areas. Other countries and states have been excluded from this research since this would reach beyond the scope of this research project. The first narrowing of cases was the countries in which NIPT was available. Further, these cases were chosen in order to avoid language barriers, focusing on cases where English is the primary working language. After this, two cases were sought out which differed greatly in their abortion legislation, which leads to the U.S.A. and the U.K. However, the regulation of both NIPT and abortion varies among states in the U.S.A. and among countries in the U.K., so these choices were further specified. In the U.S.A., Missouri is being chosen as a case study state due to its severely limited access to abortion. Based on work done by the Guttmacher Institute (2020a), it appears as though Missouri has many of the most restrictive abortions laws in comparison to other states throughout the U.S.A. This decision is met after evaluating state abortion data and noticing that Missouri had many more stipulations regarding abortion access and limited abortion availability (Guttmacher Institute, 2020a; Guttmacher Institute 2020b).
In contrast to Missouri, the other case study is focused on England since it is quite a contrast to the situation in Missouri. England’s laws regarding abortion are considered liberal (Guillaume and Rossier 2018). In England, abortions can be performed until 24 weeks of pregnancy (Department of Health and Social Care 2019). Further, the NHS, which oversees access to health services in England, does not specify many restrictions on their website with the exception of gestational time limit (NHS 2016). For the purposes of this study, England will be the focus and not the remainder of the U.K. since each country of the U.K. can govern their healthcare differently (Chang et al. 2011). While England, Scotland, and Wales are more liberal regarding access to abortion, Northern Ireland was recently more restrictive than the other countries. Out of these choices, England is selected as a case study due to data availability and governance structure. Both the U.S.A. (and therefore, Missouri) as well as the U.K. (and therefore, England) are democracies in which their federal-level governance is made up of a bicameral legislature. Both cases have conservative-leaning governments. Overall, the case selection of England and Missouri is comparable in level (which is state level, so to speak), in political leaning, and the working language is the same in both cases. Having said that, there are differences in healthcare availability and coverage between the
two cases. Further, the difference between restrictive and lenient abortion policies that exist in each case provide for an interesting comparison. Due to the focus on NIPT alone, yet evaluating two cases, this is a two-case study.
4.2 Research Design and Theory
This study has been formulated as a multiple case design (Yin 2003); within this research strategy, the theory evolves in line with the research (Yin 2003). Using Yin’s (2003) research design strategies, a two-case study format has been chosen in order to provide robustness and go beyond the current focus of Iceland and Denmark. The focus on Iceland and Denmark in other research may only present unusual cases, so this research focuses on two other cases in pursuit of being “more compelling” and “more robust” (Yin 2003, p.46). Not only this but utilizing the same research strategy for both cases allows future research to be done on other cases in order to draw more wide-ranging results, in accordance with Yin’s (2003) replication logic. Further, Missouri and England are chosen for “theoretical
replication” in which the research “predicts contrasting results but for predictable reasons” (Yin 2003, p.47). Missouri and England are chosen because they present extremes in view of the focal issue which this thesis presents (Yin 2003). Specifically, this research predicts that strict regulation and introduction of NIPT, such as that in Missouri, comes to bear on abortion rates by leading to a decrease in rates and generally neutral, unwavering opinions regarding NIPT. Conversely, lenient regulation and introduction of NIPT, which is the case in England, predicts a slight increase in abortions and a strong, negative view of NIPT, which often associates it with abortion. In exploring these predictions, each sub-question will utilize a unique strategy, as described below.
4.3 Data Collection and Analysis
Overall, this thesis utilizes a mix between quantitative and qualitative methods. The primary method of research is qualitative, although abortion data and media information are quantified. Content analysis will be a vital aspect of research, especially in reviewing governance arrangements as well as in analyzing public opinion via social media posts of Down syndrome advocacy groups and case-specific news sources. Additionally, quantifying the qualitative results will allow the comparison between the cases being studied to give light on differences that occur within similar-yet-different cases. For all research performed, information is sourced as close to the timeframe of 2008-2017, which include the five years prior to and after the introduction of NIPT in 2012, in order to provide balanced, comparable information.
In gathering the relevant data used to answer the first sub-question, first an overview of policy – both proposed and passed – will be provided. For this, databases that are used include government sites that document policy for both Missouri and England. State-sponsored sites that describe state-level insurance coverage and programs for both cases provide data as well. Beyond government information, hospital sites, private insurance sites, and other sites of healthcare professionals (such as clinics and testing laboratories) are considered when evaluating regulation. These sites provide a basis to understand the cost, availability, and access to NIPT via information available on their site that relates to NIPT and prenatal testing. The approach used when searching for this information was that of an expectant parent seeking to undergo NIPT: simply put, extensively searching for this information on the internet search engine Google (2020b). After such data is recorded, this was compiled, and the content of this information was analyzed descriptively. Using this method, an overview of the regulation of NIPT can be gathered from the view of an individual seeking NIPT. This way, there will be an understanding of the information that societal members receive when forming their own opinions regarding NIPT, as discussed in the third sub-question of this thesis.
In understanding the way in which NIPT’s introduction and regulation come to bear on abortion rates, abortion data were analyzed. Abortion data is sourced from state-sponsored websites which recorded data on the quantity of abortions, as well as rate of abortions. This information is available for Missouri alone, but in the case of England this data is only available for England and Wales together. After sourcing data, this information was entered into an Excel spreadsheet by year. Subsequently, bar charts were formulated in order to provide a visualization of this data. This format allows for an assumed observable impact on abortion rate to become visually apparent. Following this, peaks in abortion data are
compared with news articles published at times of peaks in order to provide possible accounts for fluctuations in data. Upon reviewing this information, the data is visually observed and compared to the period preceding the introduction of NIPT, 2008-2012, and the period following the introduction of NIPT, 2013-2017.
Data used to answer the third sub-question is developed in order to understand how the public makes sense of the relationship between NIPT and abortion, given the results of the first and second question. In all cases, comparing the results for this third sub-question for the time period before NIPT and after its introduction provides an avenue to measure whether NIPT has an influence on the societal view of this relationship. Search engine analytics are utilized when evaluating the overall societal debate, specifically trends
on Google (2020) in Missouri and England. This way, public interest can be measured for prenatal testing, abortion, Down syndrome, non-invasive prenatal testing, and NIPT. This information allows for parallels to be made of public interest in these topics, and whether interest in one topic correlates to the interest in another topic. After downloading this data and recording it in an Excel spreadsheet, this data was plotted over time. This way, visual correlations are easily visible.
In terms of news article publications, Nexis Uni® is utilized to gather data on news publications from the St. Louis Post-Dispatch in Missouri and the Daily Mail and Mail on
Sunday (London) in England. This form of data sourcing allows for the evaluation of data
that is specific to the location of each case, removing publications which are released on a national or even international basis. The St. Louis Post-Dispatch in Missouri was chosen as a data source for news articles in Missouri as it is the main source for local news in St. Louis, Missouri, which is not affiliated with any national news agencies such as NBC (Pew Research Center 2019). St. Louis is also a major city in Missouri, being the second largest city in Missouri by population (United States Census Bureau 2020). Additionally, their data is available in Nexis Uni® whereas the local news source in the highest populated city, Kansas City, was not. As for news articles in the case of England, the Daily Mail and Mail on Sunday
(London) was chosen as it “is the most widely-read news title in the UK” (Jigsaw Research
2018). Further, this news source is local to London, the most densely populated city in England (Park 2020), and not affiliated with a national or global news source such as CNN. Additionally, similar to the St. Louis Post-Dispatch, data is available from the Daily Mail and
Mail on Sunday (London) on Nexis Uni®. Therefore, the data on news articles is obtained at a similar, comparable level. News sources which were not local to these areas were eliminated as data sources; global news articles and national news articles (in this case, news covering the entire U.S. and all of the U.K.) may differ from the opinion of those local to Missouri and England. Therefore, this would be an improper reflection of news relevant specifically to local Missouri and England residents.
In evaluating data, information is manually coded and quantified in an Excel spreadsheet. Figures representing this data are also created using Excel. Standardizing the coding for news articles allows for trends in news publications to be made apparent. As such, news articles will be coded as “positive,” “negative,” or “neutral” when evaluating the language used when discussing NIPT. All positively coded articles have in common that NIPT is seen as helpful. To be more specific, these articles share information such as NIPT
one’s pregnancy. An individual might not have known about this information were the technology not available. Articles coded as negative primarily use language that describes NIPT as being unhelpful, often painting NIPT as the factor leading to increases in abortion or increases in discriminatory acts against certain groups such as those with Down syndrome. Those articles coded as neutral present both sides of the argument. Reviewing the content of these articles and coding them provides an understanding of the information which local residents see regarding NIPT. This data also provides valuable insights in understanding the societal debate in these areas, showing trends in the way that NIPT is regarded publicly and how this has changed over time.
Lastly, the social media website Facebook is used in order to gain the perspective of Down syndrome advocacy groups, specifically the Down Syndrome Guild of Greater Kansas City (2020a) in Missouri and the Downs Syndrome Research Foundation UK (2020) in England. These two Down syndrome advocacy groups were selected as data sources as they are both based out of the most highly populated cities in Missouri and England (United States Census Bureau 2020; Park 2020). Further, both groups have a similar level of activity on Facebook and their websites. The same criteria will be used when evaluating the Facebook posts of both Down syndrome advocacy groups. In both cases, their Facebook pages were searched for the terms NIPT, prenatal testing, noninvasive prenatal testing, and abortion. After searching for these terms, each post relating to the search terms is individually reviewed for the contained content, and manually noted for the language used when
describing these issues. Any posts discussing abortion without mention of prenatal testing of any sort were excluded from this study due to lack of relevancy. The same information was researched when exploring the information available on the sites for each Down syndrome advocacy group. After reviewing all content on both Facebook and the websites of each group, a review was written discussing the standpoint of each group and possible fluctuations in this standpoint over time.
Upon reviewing the data for each case separately, parallels in data from Missouri and England are made. Stark differences in content are illustrated in a descriptive, exploratory manner. Further, search engine data from Google in both Missouri and England is averaged using Excel and displayed in Table 1 for ease of comparison. Using these methods for comparison of both cases, the theoretical replication proposed by Yin (2003) can be properly executed, providing robust results. Additionally, the combination of all data in both cases allows for the development of a broader theory, which can be tested using the methods outlined above in other cases.
Chapter 5: Missouri
5.1 Introduction and Regulation of NIPT
The state of Missouri is a leaning state and has been conservative-leaning since the early 2000s and including the entire duration of this study (Ballotpedia 2020a; Ballotpedia 2020b). Although Missouri falls within the jurisdiction of the U.S.A. federal government, there also exists a state-level government which oversees the activity within the state, such as specific dealings with regard to healthcare. For the purposes of this study, only the state-level government will be studied. There exists a bicameral legislature, and any legislation proposed at the state-level must make it through both houses, and in most cases be approved by the governor of Missouri in order to be effective laws (Ballotpedia 2020a). When evaluating the regulation regarding NIPT and related prenatal testing, the proposed policy is considered in order to fully understand NIPT’s accessibility to prospective users. Thus, information from the Missouri House of Representatives and Missouri State Senate Joint Bill Tracking was gathered and the data contained in this thesis was retrieved and analyzed accordingly.
Firstly, no legislation solely regulating prenatal testing was passed, introduced, or considered in any form between 2008-2017 (Missouri House of Representatives, 2020). While legislation was proposed regarding other aspects of prenatal care, NIPT and other associated prenatal testing were never the focal point of passed legislation. However, abortion has been the topic of legislation that has been introduced in the Missouri Congress (in other words, either in the Missouri House of Representatives or the Missouri State Senate) between 2008-2017. While abortion alone will be discussed later in this case study as relates directly to the abortion rates that follow NIPT.
Beginning in 2013 there has been a noticeable trend in legislation banning abortions as a result of prenatal testing. Specifically, at the start of each year, legislation is proposed based on this factor (Rewire.News 2020a; Rewire.News 2020b). This legislation stemmed from either the Missouri House of Representatives, the Missouri State Senate, or in years beyond the timeframe included in this study. The proposed legislation is titled as follows, listed in the order in which they were proposed: Missouri Abortion Ban for Sex Selection and Genetic Abnormalities Act of 2013 (HB 386), Missouri Abortion Ban for Sex Selection and Genetic Abnormalities Act of 2014 (HB 1585), Missouri Abortion Ban for Sex Selection and Genetic Abnormalities Act of 2015 (HB 439), Missouri Down syndrome Abortion Ban (SB 802), Missouri Abortion Ban for Sex Selection and Genetic Abnormalities Act of 2016 (HB
Maternal and Neonatal Care Designations (HB 58). Upon reading through all of the proposed legislation, all but one shared in common that they banned the use of abortions based on the sex or whether the fetus was found to have a genetic abnormality, such as Down syndrome. The final legislation proposed, namely the Missouri Bill Regarding Levels of Maternal and Neonatal Care Designations (HB 58), relates to the suggestion that expert guidance be considered for maternal and neonatal care, though this guidance is not able to pertain to any aspect related to the termination of pregnancy. Interestingly, no such legislation that shares similar ideals is proposed prior to 2013, or in other words, prior to the introduction of NIPT in Missouri. As for the current status of the proposed legislation, all of the legislation listed has failed to pass at the time that it was introduced. Therefore, while legislation was
consistently proposed none of it was effective.1 What is more, is that these pieces of proposed legislation were only set forth after the implementation of NIPT. Thus, this proposed policy is likely gaining traction starting in 2013 due to the entry of NIPT into the market in 2012.
However, regulation goes beyond legislation. In fact, insurance, availability, and affordability are all aspects of regulation. Agarwal et al. (2013) describes the existence of NIPT in the U.S.A. at the start of its introduction, much of which remains true throughout the duration of this study. As Agarwal et al. (2013) note, NIPT for aneuploidy is offered by four companies throughout the country, namely Sequenom (which titles their test MaterniT21 Plus), Verinata Health (which titles their test Verifi), Ariosa Diagnostics (which titles their test Harmony Prenatal Test), and Natera (which titles their test Panorama Prenatal Test). Agarwal et al. (2013) also show that patients are able to access testing provided by all four companies through their physician, at an out-of-pocket cost of $295-$1700 or cost with insurance co-pay of $95-$235 depending on the test selected. While that study was published in 2013, the overview of these same aspects is varied as time goes on in the case of Missouri. According to Women’s Care Specialists (2015), an obstetrics and gynecology provider in Missouri, the cost of NIPT has increased dramatically over time leading to a cost of
approximately $1000. However, it is unclear whether this cost includes insurance coverage for patients, or if this cost is the out-of-pocket cost. While the cost of NIPT may cause concern, a laboratory which carries out NIPT in Missouri states that “When covered by insurance, 60% of patients paid $0” and that “75% of patients paid less than $155” (Quest
1 While none of the legislation proposed within the timeframe of this study successfully became the law, the
Missouri ‘Stands for the Unborn Act’ (HB 126) was proposed in 2019 and has become a trigger law in which abortions past 8 weeks of pregnancy would become illegal. This law also explicitly prohibits termination of pregnancy based on a positive diagnosis of Down syndrome for the fetus, along with a ban on termination of pregnancy on the basis of sex or race (Rewire.News 2019).
Diagnostics, 2020). Using this information, it is apparent that the cost of testing has remained in line with the cost that was originally observed when NIPT was first introduced
commercially in the U.S.A. in 2012.
In terms of insurance coverage, there are also many factors to consider. The biggest point of contention when analyzing insurance coverage for NIPT is that copays, coverage, and related information are quite varied depending on the individual plan chosen. Therefore, it is impossible to know the governance of every insurance plan for the scope of this thesis, however a broad basis of coverage information is investigated. In terms of government-sanctioned insurance, there are two programs. Within these two programs, Medicaid is the state-level coverage which is known as MO HealthNet in the state of Missouri, and Medicare is the federal-level coverage (Missouri Department of Social Services, 2020a). According to the Missouri Department of Social Services (2020a) it is also possible to receive coverage from both sources concurrently. When evaluating the copay cost for medical services within the MO HealthNet plan, there is no specific copay listed for NIPT. However, when reviewing these costs, they range from $0.50 for Clinic Services up to $10.00 for Inpatient Hospital Services (Missouri Department of Social Services 2020b). Within the sphere of insurance copays and coverage also lie state-sponsored programs that encompass prenatal testing throughout pregnancy. In this regard, there are two programs available which provide
healthcare coverage for pregnant women and their unborn children, which are MO HealthNet for Pregnant Women (MPW) as well as Show-Me Healthy Babies (SMHB) respectively (myDSS 2020). These specific programs cover the cost of prenatal care for women and their unborn children who are low-income and both programs are part of the MO HealthNet program as well (myDSS 2020). Thus, low income women are not being excluded from receiving NIPT. Therefore, the governance arrangements surrounding NIPT by the state of Missouri are able to afford women access to such testing on the basis of cost and insurance coverage. With regard to the commercial insurance coverage, Small (2019) reports that the coverage for NIPT is wide for women that are high-risk, and that coverage for NIPT is provided for all women by 40 insurers, many of which are major insurance companies. Thus, there are some insured women that are not deemed as high-risk who likely wish to receive the NIPT test but lack the coverage by their insurer.
Despite variances in the insurance coverage and cost of NIPT, another consideration regarding the regulations surrounding the testing relates to the physical availability of such testing. While it is possible that there is insurance coverage for NIPT in Missouri, this could
availability of NIPT was evaluated and results showed that testing facilities were widespread with a robust presence. Expectant individuals that are concerned that they might be carrying a fetus with Down syndrome can obtain genetic services in their area or by contacting two hospitals in St. Louis, one hospital in Kansas City, and one hospital in Columbia to find more information regarding a facility that can provide them with testing (Missouri Department of Health & Senior Services 2018). There are also quite a few facilities beyond these four that provide information, maternal, and prenatal genetic services for those expecting throughout Missouri that likely also offer such testing, and these facilities are quite prevalent and widespread throughout the state (Missouri Department of Health & Senior Services 2020). Therefore, it seems as though NIPT is widely covered both geographically and by insurers throughout Missouri, leading to easy access for expecting individuals to receive testing. In addition, Missouri Baptist Medical Center (2020) offers maternal blood testing which detects the likelihood of a chromosomal abnormality (as NIPT does) within a bundle of
first-trimester screenings between the time of 10-14 weeks’ gestation. Thus, NIPT is being offered within the sphere of other normal tests offered to those who are pregnant and has become a regular part of pregnancy.
Overall, the regulations surrounding NIPT after its introduction are not only
extensive, but also allow for NIPT to be accessible. While the legal framework surrounding NIPT and associated prenatal testing alone is not very extensive, there is quite a bit of proposed legislation that relates NIPT to abortion in Missouri. Further, this proposed legislation has only been introduced after the introduction of NIPT, with no legislation
relating prenatal testing and abortion prior to this time. However, as discussed in Chapter 2 of this thesis, prenatal testing has an extensive history. The introduction of NIPT has made it safer for pregnant women and their fetuses to proceed in pregnancy by narrowing down the individuals that should undergo higher-risk, definitive testing for chromosomal abnormalities. Due to this fact, it is notable that legislation relating the two concepts has only begun after NIPT. Beyond the legal framework surrounding NIPT, the cost, coverage, and availability of NIPT is quite extensive in Missouri, allowing pregnant individuals across the state the opportunity to undergo NIPT.
5.2 Abortion
As reviewed in the preceding portion of this thesis which analyzes the regulation surrounding NIPT and related prenatal testing, there has been a push of proposed legislation starting in 2013 to ban abortion on the basis of prenatal testing. However, as noted in that portion, their efforts have also been unsuccessful. Within the timeframe included in this
study, none of the proposed legislation made it far enough through the legislative process to become laws. However, it appears as if news sources who are potentially outside of the Down syndrome community, are correlating an increase in abortions with an increase of NIPT (Lindeman 2015). While the results of this study cannot account for these results in other cases (other than the case of England, which will be discussed following the case of
Missouri), there are noticeable results pertaining to abortion in Missouri. To begin, Figure 1 depicts the rate of abortions that have taken place in Missouri from 2008-2009, with data sourced from Missouri Department of Health & Senior Services (2019). As is seen in Figure 1, there is a steady decline in both the recorded abortions and the resident abortions.
However, the number of estimated resident abortions declines steadily from 2008-2014 and reaches a plateau from 2015 onward. Therefore, we can reasonably conclude that while fewer abortions are taking place in Missouri, expectant individuals who are receiving abortions are
Figure 1. Abortion rates in Missouri from 2008-2017. Recorded abortions in Missouri include abortion procedures reported to the state. Resident abortions include abortions that residents report, and estimated resident abortions include those reported under resident abortions as well as abortions recorded in the neighboring states of Illinois and Arkansas who reside in Missouri. This data has been sourced from the Missouri Department of Health & Senior Services (2019).
receiving abortions at the same rate. Not only this, but the number of abortions that are taking place has not increased since the introduction of NIPT. Thus, as the section preceding this one discusses, while policymakers seem to be concerned that NIPT is causing more abortions
to take place based on increased proposed legislation since 2013, these results are not seen empirically.
Further, the Missouri Department of Health & Senior Services (2019) provides information regarding abortion rates as well, as the quantity of abortions may only tell part of the story if the population is also declining, for example. Thus, Figure 2 illustrates the ratio of abortions that have taken place per 1000 live births. In Figure 2 it is apparent that the resident abortion ratio continues to decline throughout the entire timeframe (although only slightly from 2011 to 2012). In contrast, the estimated resident abortion ratio declines steadily until 2015, and then begins to rise again slightly. While there is a slight increase in estimated resident abortion ratio towards the end of the timeframe included in this study, it is notable
Figure 2. Rate of abortions per 1000 live births in Missouri from 2008-2017. Resident abortion ratio takes into account the rate of abortions reported by residents in Missouri per 1000 live births, whereas estimated resident abortion ratio factors in reported resident abortions as well as abortions received by residents of Missouri in the neighboring states of Illinois and Arkansas per 1000 live births in Missouri. This data has been sourced from the Missouri Department of Health & Senior Services (2019).
that this rate is still lower than the abortion ratio preceding NIPT’s arrival in approximately 2012. To be specific, there were 175 estimated resident abortions per 1000 live births in 2008, 144 estimated resident abortions per 1000 live births in 2012, 121 estimated resident abortions per 1000 live births in 2015 (the lowest ratio recorded in this study), and 124 estimated resident abortions per 1000 live births in 2017. Thus, the estimated resident abortions per 1000 live births is below 71% of the same rate in 2008 in Missouri. However,
there is no data that states how many of these abortions take place on the basis of NIPT results, or other related prenatal testing results.
However, there are caveats to these results and governance surrounding abortion alone cannot be ignored. Thus, legislation governing solely abortion allows for the understanding of confounding variables that may impact abortion rates throughout the timeframe studied. Upon reviewing proposed legislation from the Missouri House of Representatives (2020), there was a great deal of proposed legislation in the five years prior to the introduction of NIPT (one in 2008, four in 2009, two in 2010, one in 2011, and three in 2012, for a total of 14 proposed policy changes prior to the introduction of NIPT). In contrast, the five years following the introduction of NIPT saw far fewer pieces of proposed legislation – one in 2014, and another in 2017. While the legislation proposed prior to NIPT was
unsuccessful, the legislation proposed after the introduction of NIPT has become legal. The content of these policies includes limitations to telemedicine so that women need to
physically (in-person) receive an abortion-inducing pill, an extension to the mandatory waiting period from the time that an individual decides they would like an abortion to the date that they will actually receive an abortion for a total of 72 hours waiting time, and allowing healthcare providers to refuse to provide abortion services on the basis of moral or religious beliefs (Missouri House of Representatives 2020). Thus, there is a great deal of policy that puts limits on the way in which women can receive abortions in Missouri, which is reflected in the substantial difference in abortions that are performed within Missouri compared with the abortions provided to Missouri residents both in and around Missouri. Despite these limitations, the estimated resident abortions reflected in Figure 1 and Figure 2 show that the quantity and rate of abortions after the introduction of NIPT are lower than those taking place before NIPT’s introduction.
5.3 Societal Debate
In answering the primary research question at the center of this thesis, the viewpoint of the public must also be considered. While the opinions of experts are a large factor in both individual and societal opinion formation (Moussaid et al. 2013), the salience of an issue must also be factored into the issue. Therefore, this portion of the Missouri case study will focus on the societal debate, while zeroing in on a Down syndrome advocacy group based in Missouri known as the Down syndrome Guild of Greater Kansas City. Using this strategy, this will be able to illuminate the public’s viewpoint on NIPT as well as the viewpoint of those within the Down syndrome community.
There are a few ways to measure the public debate regarding the relationship between NIPT and abortion. In an effort to gauge the salience of this issue, search engine analytics are consulted. Based on information provided by Google (2020a), Figure 3 shows the relative number of searches performed by Google users per week in Missouri for listed topics prior to the introduction of NIPT. Based on the information in Figure 3, it is apparent that users
Figure 3. Number of relative searches performed by users in Missouri per week on Google throughout the timeframe of 2008-2012. Each line represents the frequency of searches for an individual search term, as referenced in the legend. Data for this graph is sourced from Google (2020a) by searching for Prenatal Testing, Abortion, Non-Invasive Prenatal Testing, and NIPT between January 2008 and December 2012 in Missouri.
searched for abortion overwhelmingly more than any other search term in this study. Further, Figure 3 shows that searches for Down syndrome follow a relatively consistent pattern throughout the timeframe preceding the arrival of NIPT at the end of 2012.2 While searches for NIPT as well as non-invasive prenatal testing remain relatively low compared to the frequency of searches for other search terms, the search for prenatal testing begins to increase in frequency around 2012. Figure 3 shows no visually apparent correlation between abortion searches and any other searches, indicating that the link between abortion and NIPT has not been made at this time.
However, this trend does not continue when compared to the data gathered from Google (2020a) through the timeframe of 2013-2017, after the introduction of NIPT. The
2 There is also a visually striking peak regarding searches for abortion, and upon research this could be
correlated with protests that occurred in front of abortion clinics in 2008, or perhaps the elections for president as well as local office that occurred towards the end of 2008 (Suntrup 2019; Cole 2008).
