What does choice really mean? Prenatal testing, disability, and special education without illusions.
CONTENTS INTRODUCTION I. RECENT CONTROVERSIES: PRESIDENTIAL POLITICS, AMNIOCENTESIS, AND PUBLIC EDUCATION II. A BRIEF OVERVIEW OF THE PAST AND THE CURRENT STATUS OF PRENATAL GENETIC TESTING A. Prenatal Genetic Testing B. Prenatal Screening C. Prenatal Genetic Diagnosis and Array-Based Comparative Genome Hybridization D. Non-Invasive Prenatal Testing III. LEGAL, SOCIAL, AND BIOETHICAL EXAMINATIONS OF PRENATAL GENETIC TESTING AND DISABILITY IV. SHAPING CHOICES: THE PRENATALLY AND POSTNATALLY DIAGNOSED CONDITIONS AWARENESS ACT V. THE ILLUSION OF SPECIAL EDUCATION: THE PRIVATIZATION OF RESOURCES AND CHOICE A. Public Special Education and the IDEA B. Parents as Enforcers: The Privatization of "Rights" and the Illusion of Parents as Equal Members of the "Team" C. Private Remedies: The Real Focus of the IDEA and the Illusion of Public Responsibility for Children with Disabilities D. Vouchers and Charter Schools: The Illusion of Choice and the Ultimate Privatization of Public Education CONCLUSION
Debates over prenatal testing, disability, and public education are at the very center of my everyday work as an attorney. My legal practice focuses on representing children and families in complex special education and adoption law matters. Many of the children I represent are affected by genetic syndromes, chromosomal abnormalities, spina bifida and other neural tube defects, or disabilities caused by pregnancy, birth, and neonatal complications. I also advise several educational, medical, and social service organizations. This work involves counseling medical geneticists and genetic counselors who provide prenatal genetic testing services and develop new genetic technologies.
Through these experiences, I am uniquely able to observe and participate in the debates over the ethical and legal parameters that govern women's choices about prenatal testing and the responsibilities of individual families and society in caring for the wellbeing of children with disabilities. This Article considers the experiences of families with children affected by genetic conditions and the issues raised by prenatal genetic testing technologies. It raises questions about the appropriateness of state involvement in the choices women make about prenatal testing, particularly under the Prenatally and Postnatally Diagnosed Conditions Awareness Act of 2008. (1)
Paradoxically, those political and social actors that most often seek to involve the state in reproductive choice also support the privatization of responsibility for the care and education of children with disabilities. As a result, the privacy right relating to intimate relationships, the family, and decisions about whether to have a child is becoming less absolute. I argue that this is not accidental, as the expansion of public surveillance and regulation of women's reproductive decisions and the related demonizing of the exercise of reproductive choice has diverted attention from efforts to provide for the social welfare by developing the necessary response of a just society. Such a response should involve: (1) the promulgation of rational regulations governing the development, access, and use of existing and emerging prenatal genetic screening and diagnostic technologies; and (2) the development of policies that give all children, including ones affected by genetic disorders, access to meaningful educational opportunities and health care.
Part I of this Article frames the discussion surrounding recent public controversies about prenatal testing, public education, and choice. It explores the choices that some of my clients have made about prenatal genetic testing and considers their experiences in the context of recent political discourse. Part II provides a brief overview of prenatal testing and the choices pregnant women must make in light of emerging prenatal genetic testing technologies. Part III discusses the legal, social, and bioethical implications of prenatal testing and disability. Part IV discusses efforts to address these issues through legislation and the use of public policy to shape the choices resulting from the use of prenatal genetic testing. Finally, Part V examines questions related to the current efforts to constrict reproductive choices involving genetic testing while simultaneously privatizing responsibility for disability. This section considers some of the challenges that arise from not just being pregnant and giving birth but actually parenting children with disabilities. For parents of children with disabilities, educational issues are often a primary concern, and the public school system is the government institution that usually helps define parental choices and responsibilities. My examination focuses on the effects of increased privatization of public special education programs and services. I emphasize the contradictions created by public policies intended to constrict the exercise of reasonable reproductive choices while claiming that the need to foster parental choice justifies the neo-liberal state's transfer of educational services for children with disabilities to the private realms of family and market. (2)
I. RECENT CONTROVERSIES: PRESIDENTIAL POLITICS, AMNIOCENTESIS, AND PUBLIC EDUCATION
Professor Harold Pollack notes that "[s]ixty years ago, the birth of an intellectually disabled child was viewed as a private tragedy. Families did the best they could, for as long as they could, or turned to forbidding public institutions for help." (3) The full inclusion and equality of people with disabilities in American society is far from being achieved, but a return to the secrecy, shame, and stigma that had surrounded families with disabled children will likely never occur. Unlike the women of sixty years ago, my clients do not view their children as private tragedies; rather, they proudly advocate for them and openly share their experiences. Clients have shared stories with me about their experiences with prenatal testing and how it has affected parenting a child with disabilities. These stories reveal what influences women's choices whether to undergo prenatal testing and how they use the information that testing reveals to make decisions about their pregnancies. These stories provide insights into the complex and often transformative experience of raising children with disabilities.
I have observed that women's ethnic backgrounds, religious beliefs, language barriers, and education levels can influence their decisions about prenatal testing. These factors, however, are not predictive or uniform across cultural or ethnic groups. (4) Some of the women I represent have refused prenatal testing for religious or cultural reasons. Yet other women with religious and personal objections to abortion have undergone prenatal testing--not with the intent to terminate ah affected pregnancy, but rather to prepare for the birth and share the diagnosis with family, friends, and health professionals. I have also represented families of children who had been diagnosed prenatally with spina bifida and undergone fetal surgery. Although these children still demonstrate disabilities, their medical and education records indicate that prenatal diagnosis and surgery likely lessened the severity of their conditions.
Some of the women I have represented underwent prenatal testing because of advanced maternal age and, after learning the fetus had a chromosomal abnormality, chose to continue the pregnancy. These women decided that the challenges associated with the diagnosis neither precluded a good quality of life nor detracted from the potential satisfaction of having a child. Other women have been very open in admitting that they did not wish to have a child with a disability. These women underwent prenatal testing and were told that the fetus had normal chromosomes. However, after demonstrating unusual health issues as newborns and subsequent developmental delays, these children were diagnosed with rare genetic disorders that are not tested for unless there is a known family history. Some of these mothers have since had other children after learning about the possibility of preimplantation genetic diagnosis or prenatal diagnosis for these rare disorders. These women wanted reassurance before undertaking another pregnancy and the opportunity to act on the information if the fetus was similarly affected. Other clients, concerned about the parenting challenges they already face, have elected not to have more children despite the availability of prenatal testing or knowledge that the likelihood of another affected pregnancy is statistically small. (5)
Many women who underwent prenatal diagnosis and chose to continue an affected pregnancy have shared with me that during their pregnancy and the child's infancy they felt that they exercised independent judgment and made conscious choices despite pressure from partners or family. (6) Ultimately, these women relied on their own personal values and the information they received from health care professionals. They reported that the physicians and genetic counselors they consulted were knowledgeable and helpful. (7)
The women who learned about their child's disability during the prenatal period have felt sadness and loss about the diagnosis and experienced doubts about their choices. All profess love for their children and value their children's place in their family life, (8) but many remain affected by the difficulties of constantly focusing on their child's health. Before the births of their children, several of my clients had significant experiences with disability: some had siblings with disabilities or worked as teachers, therapists, and physicians with children with disabilities. However, even these women were not fully aware of the sense of urgency, the responsibilities, and the economic and emotional demands involved in parenting a child with disabilities. They were surprised by the lack of support they received from the very institutions required to assist their children. (9) This is the reason they come to my offices. Regardless of how they became a parent of a child with a disability, my clients believe they are "fighting for their child's educational needs to be met by institutions that are underfunded and often ill-equipped to do the job." (10) They often feel that the public school system not only fails to support their choices regarding their child but has even become a source of worry, concern, and growing resentment.
On February 19, 2012, these issues became the latest front in the decades-long cultural war over abortion and a woman's right to reproductive choice, autonomy, and privacy. During an interview on CBS's Face the Nation, then presidential candidate Rick Santorum was asked about his comments during campaign stops and media appearances that the Affordable Care Act is designed to increase abortions and reduce overall health costs by culling the ranks of the disabled. (11) Santorum argued that insurance companies should not be required to pay for prenatal testing, claiming that amniocentesis "more often than not" results in abortion. (12) This sweeping overgeneralization may have been made as a provocative sound bite, but it is still worth considering in discussing the broader issues regarding the meaning of choice and prenatal testing. (13) While Santorum indicated that he is not opposed to "general prenatal care," be sees prenatal genetic testing solely as a conduit to abortion (14) and completely ignores the contribution it makes to obstetrical care. (15) He failed to acknowledge the role testing plays in reassuring expectant mothers and their partners about the health of the fetus, the avoidance of pregnancy complications, (16) facilitating interventions like fetal surgery, (17) and helping families to prepare for the birth of a child with a disability.
Santorum was also asked about his statements against the involvement-of state and federal governments in public education. (18) His comments demonstrated firm support for the privatization of public education. He spoke of choice in public education, including the option to have localities choose to place students in private or Christian schools. (19) He advocated removing all federal mandates on education, which, although not explicitly mentioned, would include requirements to address the educational needs of children with disabilities. (20) Although likely unintended by the candidate, Santorum's campaign provides a starting point to consider the right to make choices regarding prenatal testing, disability, education, and the wider meaning of a political philosophy built upon inherent contradictions about parental rights to make choices regarding children with disabilities.
Santorum was not the first to employ this political strategy and to invoke a child with a disability. It was a more charged and strident recast of Sarah Palin's occasionally poignant--but still highly partisan-effort in 2008 to depict herself as the potential advocate in the White House for families of children with disabilities. (21) Her one substantive policy speech was about special education and contained numerous references to her son with Down syndrome. (22) Palin, who delivered her son at forty-four years old, openly acknowledged having an amniocentesis. (23) This admission is a noteworthy difference in the two candidates' discussions of their children with genetic disorders, issues related to children with disabilities, and how they discussed prenatal testing. (24) While Santorum expressed almost unqualified disdain for prenatal testing, Palin stepped outside the expected pro-life framework. She expressed thankfulness for the availability of amniocentesis and the chance the procedure gave her to prepare for her son's birth. (25) Given her avowed pro-life position, her admission that she struggled with the information and how to share it with her family reflected both unusual candor and a departure from current conservative tenets on reproductive choice issues. (26) Other than these personal revelations, however, she largely sidestepped the issue of prenatal testing throughout the remainder of the campaign.
Palin spoke gratefully about her strong family network and alluded to her ability to access resources while acknowledging others not as fortunate. (27) But unlike her discussion of her experiences with amniocentesis, Palin did not step outside the expected conservative framework regarding education reform and parental responsibility. (28) According to Palin, problems will be solved by transferring more activities to the private sector and requiring families to assume more responsibility under the guise of giving them more choices and control over their children's educational placements. (29)
While preparing to participate in this Symposium, I considered Santorum's and Palin's comments regarding both prenatal testing and public schools in light of my own experiences representing clients involved in both issues. My mind turned to the term "New Challenges" in the program's title and the English language formulation of Jean-Baptiste Alphonse Karr's famous epigram, "the more things change, the more they stay the same." (30) Prenatal genetic technologies may be rapidly expanding, but access to both abortion and to public services for children with disabilities is contracting. For the last half-century, we have remained mired in questions about what rights women have to use these technologies and how to balance private and public responsibilities for children with disabilities. The current political and social climate has forced us to return to questions regarding (1) what level of control the state or any other third party should be allowed over the individual right to exercise rational choice in the utilization of prenatal genetic testing technologies and (2) the responsibilities of a just society regarding the care and education of children with disabilities. (31)
II. A BRIEF OVERVIEW OF THE PAST AND THE CURRENT STATUS OF PRENATAL GENETIC TESTING
A. Prenatal Genetic Testing
Over the past half-century, a remarkable evolution has occurred in the development of screening and diagnostic testing for genetic and other disorders seen in the prenatal period. (32) Prenatal testing has become an integral part of routine obstetrical care and management of prospective parents. (23) Reproductive genetic testing and screening methods currently used in the clinical setting include prenatal genetic screening, prenatal genetic diagnosis utilizing invasive procedures (e.g., chorionic villus sampling and amniocentesis), (34) and preimplantation genetic diagnosis (PGD). (35) Although popular images of prenatal testing and recent political discourse have focused on invasive procedures (notably amniocentesis), most pregnant wornen undergoing prenatal testing are now less likely to undergo invasive procedures.
Prenatal screening determines a woman's risk for a chromosomal bnormality by statistically analyzing maternal serum and ultrasound markers. The primary purpose of screening is to determine whether an invasive procedure to obtain fetal genetic material for diagnostic purposes is warranted. (36) Prenatal genetic testing has very recently expanded to include noninvasive prenatal testing (37) for the identification of trisomy 21 (Down syndrome), trisomy 18 (Edward syndrome), and trisomy 13 (Patau Syndrome) as well as for the detection of X and Y chromosomes.
Although currently not considered diagnostic for any disorder, noninvasive testing will likely evolve into a fully diagnostic process for the entire fetal genome. (38)
In 2007, the American College of Obstetricians and Gynecologists (ACOG) issued Practice Bulletins recommending that prenatal screening using ultrasound, serum makers, and invasive prenatal testing be offered to all pregnant women, regardless of age. (39) The guidelines recommend that both first- and second-trimester screening be offered to women who seek prenatal care in the first trimester. (40) Most importantly, "maternal age of 35 years alone should no longer be used as a threshold to determine who is offered screening versus who is offered invasive testing." (41) Adding to the challenges of how to counsel all pregnant women about prenatal testing is the broadening range of inherited disorders that carrier screening can identify in parents and during the prenatal period as well as the introduction of noninvasive prenatal testing. (42)
B. Prenatal Screening
To understand prenatal testing technologies, it is important to draw a distinction between prenatal screening and diagnosis. "A screening test either determines whether prospective parents are carriers of mutations (e.g., cystic fibrosis) or whether a pregnancy is at increased risk for a specific disorder (e.g., a chromosomal abnormality such as trisomy 21)." (43)
Before 1970, reproductive risk assessment was largely based on family history, patterns of inheritance of known Mendelian diseases, and limited information about the prevalence of genetic, developmental, and other disorders in newborns. (44) During the 1970s, mid-trimester amniocentesis made actual prenatal diagnosis of some genetic disorders possible. (45) In the early 1980s, physicians began to use genetic screening of maternal serum alpha fetoprotein widely in clinical practice. (46) The use of this type of screening in the second trimester for all pregnant women became possible with the development of statistical analyses that discriminated more accurately between affected and unaffected pregnancies. (47) By the end of the 1980s, the use of maternal serum biochemistry and detailed ultrasonographic examination in the second trimester became the standard of care. (48)
In the early 1990s, clinicians in London started performing first trimester screening for trisomy 21 and other aneuploidies utilizing measurements of nuchal translucency (the amount of fluid behind the neck of the fetus) via ultrasound during the first trimester. (49) The accuracy of this screening technique has since been enhanced by using a likelihood ratio analysis based on maternal age, nuchal translucency thickness, and measurements of maternal serum proteins free-beta hCG (human chorionic gondatropin) and PAPP-A (pregnancy-associated plasma protein). (50) These techniques were adopted into clinical use in the United States in the late 1990s. (51) Screening by this combined test can identify about 90 percent of fetuses with trisomy 21 and other major aneuploidies with a false-positive rate of 5 percent. (52) This approach has been further refined with the use of fetal nasal bone measurements (53) and screening for cardiac abnormalities. (54)
Prenatal screening using ultrasound and maternal markers has altered the rate of invasive prenatal diagnosis. This is particularly apparent in the population of women over thirty-five years of age as increasing numbers of these women rely on the individually adjusted risk figure for Down syndrome to make a decision about invasive testing. (55) The use of these screening tests has lowered the gestational age of prenatal diagnosis and potential abortion. (56) Increased use of first trimester screening has also affected pregnancy management and outcome. (57) Certain biophysical markers (maternal weight, height, ethnic background, age, and obstetrical history) and certain biochemical markers are associated with preeclampsia, gestational diabetes mellitus, small-for-gestational-age fetuses, and preterm delivery. (58) Identification of these risk factors is increasingly being used to structure prenatal care to avoid pregnancy complications associated with delivering newborns at significantly increased risk for lifelong disabilities. (59)
C. Prenatal Genetic Diagnosis and Array-Based Comparative Genome Hybridization
A screening test is neither a definitive test nora diagnostic test. (60) The information obtained from screening tests is typically used to aid in a decision whether to proceed with diagnostic testing. (61) Diagnostic testing involves chorionic villus sampling (CVS) or amniocentesis. (62) Two innovations are changing the practice of prenatal testing: array-based comparative genome hybridization (aCGH) (63) and noninvasive prenatal testing. (64)
Array-based comparative genome hybridization is one of several recent developments in laboratory analysis for chromosomal and single-gene abnormalities found in samples obtained from amniocentesis or CVS. Although conventional chromosome analysis remains the "gold standard," it is not capable of identifying the submicroscopic deletions or duplications of DNA from chromosomes that are often associated with congenital malformations and significant developmental disabilities. (65) These can be identified by aCGH. (66) The method has already been established for fast and accurate detection of chromosome abnormalities in the postnatal period, allowing for diagnosis of syndromes and better clinical management of children who are demonstrating developmental delays and have normal chromosome analysis using conventional karyotyping. (67)
While aCGH permits fast and accurate detection of chromosome abnormalities in the postnatal period, its use in the prenatal setting poses several clinical and ethical challenges. (68) First, because aCGH increases the statistical likelihood of identification of clinically significant variations, it results in more women being told that a fetus has some type of chromosomal abnormality. (69) Second, standards have not yet been established for whether the aCGH platform should be applied using target arrays or genome-wide arrays. (70) While target arrays focus on specific genomic disorders, genome-wide arrays allow for the potential detection of every known genetic disorder. (71) The higher resolution of aCGH analysis can also identify chromosomal variations that are either benign or of uncertain clinical significance. (72)
Medical geneticists, genetics counselors, and their legal and ethics advisors are currently struggling to develop practice policies and informed consent procedures to address the challenges resulting from using this technology in prenatal diagnosis. (73) Clinicians must help patients make decisions based on a chromosomal analysis that is significantly more sensitive than was available with previous methods of prenatal testing. (74) This sensitivity requires patients to confront choices about pregnancies demonstrating chromosomal variations that are anomalous but uncertain to cause developmental or other disabilities. (75) This information further complicates the choices women must make about prenatal testing, forcing them to decide how much information they wish to learn and what to do when an analysis reveals uncertain information.
D. Non-Invasive Prenatal Testing
For the last two decades, the risk of miscarriage associated with invasive procedures, even when performed by the most skilled and experienced physicians under state-of-the-art ultrasound guidance, has fueled research into noninvasive prenatal diagnostic techniques. (76) Until recently, clinicians and researchers considered the development of reliable non-invasive prenatal methods as the "holy grail" of clinical prenatal genetics. (77) The clinical availability of noninvasive prenatal testing represents a paradigm shift. With non-invasive testing, the risk of miscarriage is eliminated. In fact, the only physical risk to the mother is from a simple blood draw.
The widespread availability and use of these technologies will undoubtedly make prenatal testing near-universal, sparking debates over the choices that are available to women for prenatal testing and, potentially, abortion. (78) These technologies will identify more easily and precisely those disabilities that are not life-threatening but life-limiting; disabilities that often require expensive medical treatment and educational and therapeutic services to ensure both the highest quality of life and achievement. The potential for non-invasive testing technologies to avoid disabilities will likely intensify, rather than resolve, existing tensions over the proper care and education of children with disabilities.
III. LEGAL, SOCIAL, AND BIOETHICAL EXAMINATIONS OF PRENATAL GENETIC TESTING AND DISABILITY
The widespread availability and use of screening and diagnostic testing and recent technological advances in prenatal diagnosis have challenged social activists, legal scholars, and bioethicists to examine many interrelated issues concerning prenatal testing. These concerns include how testing affects the experiences of women during and after pregnancy and more broadly influences attitudes about the role of people with disabilities in American society. (79) These examinations consider prenatal genetic technologies within the historic context of the eugenics movement (80) and the potential coercive use of prenatal testing through legal mandates (81) or by implicit social pressures on women and their partners. (82) Another area of concern is the role prenatal genetic testing plays in the avoidance of the birth of children with disabilities and the subsequent exacerbation of long-standing discrimination against those with disabilities. (83)
Disability is often discussed using distinct models. (84) The medical model of disability equates it with illness and considers disability as an undesirable impairment of human function. (85) The social model considers the construction of disability as representing a confluence of a person's physical or mental traits and the surrounding environment. (86) This model considers disability as a social construction, like race, that can be stigmatized by a society that collectively struggles to understand, accommodate, and accept difference--especially when such difference raises the perception of weakness and vulnerability. (87) By directing attention not at the individual with a disability but at the array of social choices that create most of the disadvantage attached to disability, the overarching policy implication is to encourage a focus "not on rehabilitation or charity but on eliminating the physical, social, and attitudinal barriers that make some physical and mental impairments disabling." (88) The minority group model of disability uses the social model as a foundation but transforms it from an identity to a political call to action. (89) The minority model is also called the "civil rights" approach because of its focus on addressing systemic issues related to the social, political, and legal practices that result in the exclusion of people with disabilities from equal participation in society. (90)
While acknowledging the long history of discrimination and abuse against those with disabilities, I choose to analyze disability in a way that emphasizes understanding it as an identity that is highly individualistic and dependent upon myriad cultural factors in all realms, including cultural, physical, and psychological attributes and experience. (91) This view recognizes that disability is part of the human condition and acknowledges that there will likely always be adults and children with disabilities due to a wide range of causes that may or may not be detectable, preventable, or curable. These reasons might include acute illness, injury, infectious disease, or any other acquired health condition. (92) The limitations of prenatal testing must also be considered within this view because such testing depends upon the application of technologies by fallible humans and may also reflect conscious choices not to test for certain conditions. Therefore, no test can be considered perfect or an absolute guarantee that a child will be born free from all genetic conditions.
This pragmatic approach acknowledges that formal law reflects an awkward view of the otherness of people with disabilities. This view is demonstrated by the unresolved definition of what "disability" and "equality" mean in educational policy development and implementation. Does equality mean merely including students with disabilities with those without disabilities? Or does it mean ensuring equality of opportunity, achievement, and advancement? (93) Most importantly, this view acknowledges that the tension surrounding the education of children with disabilities reflects a more global ambivalence, including responsibility for the education of children with disabilities. (94)
Over the past four decades, in response to the burgeoning use of genetic testing, social activists, scholars, lawyers, physicians, and bioethicists have debated the potential impact of carrier screening programs and prenatal diagnosis on society, individual women, and families. The feminist response to questions about prenatal testing, disability, and women has not been at all monolithic or simplistic. (95) Some feminist commentators have argued that the availability of reproductive choices, including prenatal testing, enhances the autonomy of women by allowing them to have access to information--the prenatal embodiment of the Jeffersonian maxim that "knowledge is power, that knowledge is safety, and that knowledge is happiness." (96)
This view also influenced the reproductive rights movement. Although most often focused on advocating against challenges to women's individual choices and interference with personal autonomy and procreative liberty, the reproductive rights movement has sometimes relied (not without considerable debate and controversy) on public support for women's right to act on the knowledge they receive from prenatal testing to have an abortion after the diagnosis of fetal anomalies. (97)
Other feminist, social-justice-oriented examinations focus on the possibility of prenatal testing becoming" culturally or even legally mandatory (98) and leading to the questioning of women who do not undergo all available procedures (99) (or lack the resources to access these procedures (100)) and the increased tolerance of eugenic policies. (101) The use of prenatal testing for gender selection has also created apprehensions about allowing free choice because of concerns that widespread use for that purpose will result in the further subordination of girls and women. (102) Another unresolved dilemma concerns balancing the responsibilities and choices of women and their partners with the rights of their potential offspring to have an open future and whether these individual choices should incur liability. (103)
The overarching concern has been ensuring the right to choose not to undergo prenatal testing by recognizing that informed choice can only be made if a woman receives all the information relevant to the decision and feels free of coercion or persuasion. (104) The discussions of the potential for coercion focused attention on the possible abusive use of reproductive technologies not only in totalitarian states but also through social pressure in more democratic societies. (105) These discussions included considerations of the potential risk of prosecution for women who declined prenatal testing or tort actions undertaken by children born with disabilities against mothers for refusing to undergo testing or providing treatment that might have improved their outcomes. (106) The most disturbing scenarios have not yet materialized. However, the debate over prenatal testing continues to be informed by the potential social and moral consequences of women feeling that they cannot exercise free agency because they are pressured to submit to prenatal testing--an action that represents one of the first acts of responsible mothering. (107)
Disability scholars and activists have focused on the potential abuses of prenatal testing and its meaning in the context of the historic treatment of people with disabilities. The most ardent disability rights critique, the expressivist argument, considers the fetal anomaly argument an anathema. The expressivist argument holds that the use of prenatal testing is fundamentally incompatible with the belief that society can work both to decrease the incidence of disability and support people living with disabilities. (108) "Simply put, the argument is that prenatal testing sends the message to people with disabilities that their lives are not worth living." (109) It cannot be reconciled with efforts to include people with disabilities. No distinctions can be made about what conditions are acceptable to select for or unacceptable to select for because some condition, group, or person will always be deemed unacceptable. (110)
The more nuanced disability rights critique does not focus on an absolute approach to the morality of abortion, though it still considers the choice to use prenatal testing if followed by selective abortion as morally problematic and the result of misinformation. (111) For those who identify as both pro-choice feminists and as disability rights activists, the goal of the disability rights movement concerning abortion is the right not to have an abortion and to make choices reflecting the belief that raising a child with a disability is not necessarily undesirable. (112) This critique views continuing, persistent, and pervasive discrimination as the major problem people with disabilities confront. (113) Prenatal diagnosis is viewed as an extension of that discrimination because it reinforces the medical model of disability by drawing attention away from solving the societal discrimination people with disabilities face. (114) Accordingly, this critique holds that using prenatal genetic tests has pernicious effects on the lives of existing disabled people by expressing a hurtful view of them and reducing human diversity--with the ultimate result of hindering the societal goal of recognizing and promoting equality. (115) Proponents of the disability rights critique believe that women who choose to undergo prenatal diagnosis may reject an otherwise desired child, believing that the child's disability will diminish their parental experience. This suggests that these women are unwilling to accept any significant departure from more conventional parental dreams for that child and fail to consider that parenting a child with a disability can provide the child-rearing experience they desire. (116)
Those who come to disability advocacy as a result of being the parent or caretaker of a person with disabilities are divided about prenatal testing and its impact on the resources available to care for those with disabilities. (117) Some embrace the loss-of-support argument and believe that prenatal genetic testing will diminish the acceptance of people with disabilities and may discourage government funding for research and social and educational services. (118) Among parents of children and young adults with intellectual disabilities like Down syndrome, the loss-of-support argument extends to the realm of social interactions--a fear that without the birth of children with Down syndrome, it will be a lonelier world for those with Down syndrome. (119)
There are those who also personalize the moral dimensions. "Some caregivers regard such tests--which can lead to abortions after unfavorable results--as an affront to the equal humanity of their loved ones." (120) In contrast, "[o]thers quietly note the value of such testing and even suggest that terminating a pregnancy is sometimes the better course." (121) The willingness to support termination among disability advocates and caretakers usually involves the diagnosis of severe disabilities like anencephaly or syndromes that result in death during infancy or childhood such as Tay-Sachs disease (122) or spinal muscular atrophy (types I and II) (123): life-threatening, as opposed to life-altering or life-limiting, conditions. (124)
IV. SHAPING CHOICES: THE PRENATALLY AND POSTNATALLY DIAGNOSED CONDITIONS AWARENESS ACT
There are various medical, social, economic, and personal rationales underlying whether to use prenatal testing and what information a woman may learn from undergoing testing. For some women, the purpose of prenatal testing is solely for information gathering--to provide reassurance about their pregnancy or to give their health care providers and families time to prepare for the delivery and care of a child with a diagnosed disability. Regardless of one's rationale for testing, prenatal testing indisputably allows women to learn about potential fetal health and may compel them to make choices in response to that knowledge. Whether consciously understood or acknowledged, women make choices regarding the use of prenatal testing and the resulting information in a complex environment of conflicting opinions and agendas about pregnancy, abortion, disability, motherhood, and parental and family responsibilities. (125) All pregnant women, especially those women carrying fetuses affected by genetic conditions, must confront questions and face choices that lend themselves to an entire body of philosophical literature: What makes for a "good life?" What is the measure and value of health and human capacity? (126)
For the minority of women who receive test results revealing a fetal anomaly, their choices are both limited in number and infinite in potential challenges. In the very small subset of cases where medical intervention is possible, some women might seek fetal surgery in an effort to ameliorate the effects of an anomaly. (127) The other choices are preparing to parent a child with a disability, placing the child for adoption, (128) or terminating the pregnancy.
An essential starting point in the examination of the meaning of those choices for women regarding prenatal testing and disability is acknowledging that "because a child's disability is viewed as a private problem for the family, the gendered attribution of responsibilities for family health to women obligates them to deal with it alone whether by avoiding, reducing or managing disability." (129) Pregnant women face these responsibilities in terms of the immediate issue of fetal health. After birth, for both biological and social reasons, women remain overwhelmingly in the highly stressful position of primary caretaker and must begin to confront future issues related to nurturing, rearing, and educating children. (130) These stresses are exacerbated considering that the caregiver role is seen as an operation in the private sphere with little or no systemic supports. (131) Stresses are further compounded when women must confront these challenges alone and in poverty. (132)
Proponents of expanding prenatal testing to all women recognize these concerns. In an interview with the New York Times, Dr. Deborah Driscoll, lead author of the ACOG Practice Bulletins, acknowledged "there are many couples who do not want to have a baby with Down syndrome.... They don't have the resources, don't have the emotional stamina, don't have the family support. We are recommending this testing be offered so that parents have a choice." (133)
Those opposed to prenatal testing because of opposition to abortion have routinely criticized the information prospective parents are given by health professionals providing prenatal testing about what it is like to have and raise a child with Down syndrome. Opponents of prenatal testing have argued that health professionals too often focus on only dire outcomes and the hardest challenges rather than the positive experiences. According to these critics, this counseling places undue pressure on parents to terminate pregnancies affected with Down syndrome and consequently reduces the number of individuals living with Down syndrome. (134) Even supporters of prenatal testing and healthcare professionals acknowledge the negative impact of the model of disability and the difficulties clinicians face in providing a balanced description of Down syndrome when counseling patients. (135)
In 2007, Senator Sam Brownback introduced legislation, co-sponsored by Senator Edward Kennedy, called the Prenatally and Postnatally Diagnosed Conditions Awareness Act. (136) Congress passed the Act on September 25, 2008 by a voice vote, and President George W. Bush signed the bill into law on October 8, 2008. (137) Groups across the political spectrum hailed the passage of the Act and considered it an opportunity to elevate the national discourse around disability and to provide additional information to women who choose to raise children with disabilities without including anti-choice language or provisions. (138) The Act is intended to increase the provision of scientifically sound information and support services to patients receiving a positive diagnosis for Down syndrome or other prenatally and postnatally diagnosed conditions. (139) The Act's focus is exclusively on collection and dissemination of information instead of research, funding, provision of services, or other actions designed to address the actual needs of families and children. This is likely one reason passage was supported by such divergent and diverse groups. Although the Act places no mandates or requirements on health professionals, professional organizations, including the National Society of Genetic Counselors, use the language of the Act as a guidepost in issuing practice guidelines. (140)
According to Professor Rebecca Dresser, the Act reflects an attempt to find common ground among pro-choice, pro-life, and disability advocates and marks a promising sign of compromise in the culture war over prenatal diagnosis in reproductive choice. (141) Because the Act situates women's choices about pregnancy within the standard informed consent framework and references to "up-to-date [and] evidence based" information, it may help rebuff the impact of recent laws that ostensibly promote informed choice, but in fact require the delivery of inaccurate and partisan information about the risks and outcomes of abortion. (142) But given the current political climate and recent state legislative enactments, Professor Dresser's predication may prove overly optimistic. Prenatal diagnosis via currently established modalities is still legal and will likely remain so, but outright prohibitions are not the only means to restrict women's abilities to make choices about pregnancy. (143) Currently existing laws will likely have a chilling effect on women's access to choices even as the standards of care and technology make prenatal testing one of the cornerstones of obstetrical patient care. These include measures that require the dissemination of potentially medically suspect information, (144) medically unnecessary ultrasound scans prior to abortions, (145) and laws personifying embryos and fetuses. (146) The most obvious example is providing physicians with immunity from tort liability for intentionally not telling a woman her fetus has an anomaly detected by ultrasound or other form of prenatal testing. (147) These measures will likely restrict women's right to choose termination after prenatal testing even if there is not an absolute prohibition on abortions. (148)
Professor Mary Mahowald has argued that
while individuals are unable to care adequately for a child in some instances, the same is hardly true for society as a whole, at least in the developed world. Collectively, society has all the resources necessary to care adequately for all of its people: healthy newborns, those with disabilities, or anyone who needs care that is not available through parents or other family members. Accordingly, society in general does not have the justification that some pregnant women may have for testing and abortion of fetuses whose subsequent care may be impossible for them to provide. (149)
Professor Mahowald's argument is based on the belief that an enlightened society generally accepts these additional costs and burdens as just, recognizing that any one of us might have been born with or acquire such a disease or disability.
This formulation raises the question about whether the Act and similar measures intended to ensure "balance" in the presentation of information about the lives of children and adults with genetic conditions truly promotes both informed consent and choice, given the privatization of responsibility for disability and the fact that pregnant women's choices are being increasingly constricted. Depending on a family's ability to access services from public schools and other government institutions, the disclosure of information as embodied by the Act on "the range of outcomes for individuals living with the diagnosed condition, including physical, developmental, educational, and psychosocial outcomes" may actually present an unrealistic and unattainable--or even coercive--picture of the choice to parent a child with a disability. (150)
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|Title Annotation:||Introduction through IV. Shaping Choices: The Prenatally and Postnatally Diagnosed Conditions Awareness Act, p. 55-84; New Technologies, New Challenges: Women and Prenatal Genetic Testing in the 21st Century|
|Date:||Mar 22, 2013|
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