Legal Discrepancies and Expectations of Women: Abortion, Fetal Therapy, and NICU Care

Despite Roe v. Wade (1973)’s protection of abortion rights, a gradual curtailing of access in many states since then has coincided with an expansion of parental autonomy to make decisions for preterm or severely ill neonates or fetuses. This has created a discrepancy in reproductive law, made more conspicuous since Dobbs v. Jackson (2022)’s overturning of Roe, such that a pregnant person, in many states, is not able to terminate a pregnancy despite a serious diagnosis in the fetus at a gestational age at which she can decline invasive interventions likely to keep a fetus or premature infant alive.¹ Consider a 24-week pregnant woman living in Texas whose fetus is diagnosed with a severe congenital diaphragmatic hernia, an anomaly associated with high morbidity and mortality. While aborting would not be a legal option, she would be permitted to refuse fetal therapy intervention, even if it were likely to improve the fetus’s outcome and survival odds, and to elect comfort care after birth, although the outcome would result in the same as aborting would. In other words, as an individual progresses from a pregnant person considering, or needing, abortion, to one contemplating fetal therapy, to subsequently a parent making medical care decisions, the legal constraints on her autonomy shrink even in cases where the consequences of her decisions are similar.

We argue that the recent loss of federal abortion protection in Dobbs has widened a growing divide between women’s rights as pregnant persons v. as parents. Just as the anti-abortion agenda of curtailing abortion access in many areas has been succeeding steadily over the past few decades, an increasingly liberal conception of parenthood and medical decision-making as requiring autonomy has provided parents a broadening zone of discretion. We have, as such, entered a new era where in many states a woman cannot access abortion for a serious fetal or maternal medical condition at a gestational age at which she can decline treatments that also result in fetal/neonatal death. This discrepancy matters, we argue, because it reflects a deeper message around how we view a woman’s role in society and the value and accordingly rights a woman is guaranteed. In abortion, a woman is seen to be shirking her role as procreator, whereas in fetal therapy and NICU, she is viewed as exercising her responsibilities as a mother. Our goal in this paper is not to comment on the legality of abortion, nor to suggest a new legal regime for any of these cases (abortion and fetal and NICU care), but rather to analyze the emergence of these discrepancies and what may underly it.

In what follows, we first show that the legal decision-making schemes for abortion, fetal therapy, and NICU care create divergent thresholds of autonomy (or lack thereof), and second, that discrepancies are explained by deeply rooted cultural conversations about what it means to be a woman in America. To do so, we compare the outcomes and constraints v. freedoms in the three realms of analysis: abortion, fetal therapy, and NICU care. For the domain of abortion, we ask: In medical cases, can she even get one, and how hard would it be to do so? Under what circumstances? For fetal therapy: Is she allowed to refuse an in-utero interventions even if it is necessary for sustaining the fetus’s life? And if she delivered prematurely or for other reasons her child was very ill in the neonatal intensive care unit (NICU): Can she choose to withdraw a ventilator? And in the last section, we argue that as a woman transitions from potential to likely mother, her ability to decide whether to stay pregnant and what her relationship is to her body and her fetus or child’s also shift.

On Legal Discrepancies

Whereas even before Dobbs, there has been a long encroachment on abortion rights, fetal therapy and NICU landscapes have increasingly protected the rights of women to decide what is in her, and her fetus or infant’s interest, in accordance with other standard concepts of medical ethics, such as respect for personhood and autonomy. This leads to the discrepancy identified above: in some states, a woman is often constrained in her choice to terminate life while it is in her body but once the baby born, she may decline treatment for its fetal anomaly even at the same point in development and with similar odds of survival. By comparing the divergent legal histories and restrictions for abortion and NICU care/fetal therapy, we deepen our understanding that the political opposition to abortion is about more than protecting embryonic life – it is about preserving gender roles.

There are many moments of discrepancy, inconsistency, and contradiction in public policy, law, and judicial interpretation, particularly on the topic of abortion. Consider, as others have, that if such laws as hospital admitting privileges and ambulatory size hallways really did aim to keep women “safe” as its supporters purported them to do, then abortion rights would expand, rather that contract, as more women die from pregnancy-related complications and childbirth.² Discrepancy itself does not necessarily reveal moral problems insofar as law is meant to protect rights and freedom from domination and oppression and should be judged on that basis as opposed to consistency per se. After all, we would only want laws to be consistent if they were consistently good.³ As it applies to the current case, the expansion of NICU parental authority to decline medical intervention does not directly dictate the importance or morality of abortion rights, which is grounded in important justice claims that stand on their own.

Identifying discrepancies, however, can prove a fruitful endeavor in interrogating the political and ethical dimensions of rules that dictate our bodies and within social, gender, and racial power inequalities. By scrutinizing autonomy discrepancies of this kind and divergent barriers v. protections in the law around medical decision-making, we hope to shed insight into the ways in which legal regimes are strongly impacted by social realities.

Our argument pertains to the importance of understanding what may be motivating legal discrepancies, not whether there are moral inconsistencies. Indeed, we acknowledge that there are many other differences between a fetus and neonate both at 24 weeks gestation, which eliminate certain moral, as opposed to legal, inconsistencies in autonomy over decision-making. Katie Watson, for example, argues that there is no moral inconsistency in these cases because the cases differ based on the location of the fetus/neonate (inside v. outside the womb) as well as the patient’s decision-making framing. Watson writes, “obstetricians who do both abortions and premature deliveries in the gray zone (sometimes on the same shift) and obstetricians who do post-viability abortions in states in which they are not banned for reasons other than maternal life and health have concluded that following their adult patients’ wishes until their fetus leaves their body and becomes a second patient is morally coherent. For them, ‘treating like cases alike’ means respecting all adult decision-makers, whether or not they are pregnant.”⁴ Watson goes on to argue that part of the reason there is no moral inconsistency here is the distinction between commission and omission: abortion actively interrupts a pregnancy whereas an omission lets “nature take its course.”⁵

In addition, we have different kinds of duties. One may have both a legal and moral obligation to refrain from actively harming, but that does not translate into positive duties to provide kidneys to strangers, or even to family members. In our argument, we agree with Watson that there is moral consistency between the cases we discuss – and do not support, for example, curtailing autonomy for the sake of upholding some neutral value of continuity. Instead, our argument is that the discrepancy is worth examining because it reveals what is truly at work when opposing abortion access, as opposed to other medical procedures or conditions that have the same outcome. Our aim is to show that this is not just a coincidence, but is rooted in societal approaches to women’s function before, during, and after she is pregnant.

Abortion, Fetal Therapy, and NICU Care

The reason that the laws in these three domains differ, we argue, is that they make important social and legal distinctions between the rights of a pregnant woman as procreator v. a mother with certain roles and responsibilities of care. While states have increasingly aimed to constrain access to abortion, options for declining fetal therapy and invasive NICU care, which also result in death, have expanded.

Abortion Law and Loss of Autonomy

The pre-Dobbs legal landscape was defined by a juridical trimester framework and an undue burden standard as carved out by Roe and Casey v Planned Parenthood (1993). Prior to their repeal, autonomy for abortion until the third trimester was largely protected by undue burden restriction which required a high threshold of proving safety need.

When Roe v. Wade (1973) upheld first trimester abortions, it also allowed states to regulate second trimester abortions for medical reasons and ban third trimester abortions after the point of viability. As a result, in the U.S., there was, and still remains even Dobbs’s repeal, wide state-based variation in access to abortion. Planned Parenthood v. Casey (1992) codified the “undue burden” test for regulations during the second trimester while re-affirming the viability cut off.⁶ Casey concerned five provisions of a Pennsylvania abortion statute: Informed consent requires a 24-hour waiting period, a married woman must notify her husband, minors must receive parental permission, and medical emergencies override these other requirements. The Court upheld all the provisions, stating that “to protect the central right recognized by Roe while at the same time accommodating the State’s profound interest in potential life… the undue burden standard should be employed.” A “substantial obstacle to abortion” can be understood as a balance of claims of women’s safety with reasonableness to access. In other words, any “burdens” placed on women seeking abortions must be reasoned in reference to “valid safety standards,” otherwise it is “undue.”

Over the years, this was the predominant test of whether a law that restricted abortion was permissible, including for requirements that abortion providers have hospital admitting privileges and that abortion clinics have ambulatory wide halls. In Whole Women’s Health v. Hellerstedt (2016), the Court ruled that requiring these (often) unattainable admitting privileges and adhere to prohibitively expensive building requirements, like certain dimensions of hallways and janitors’ closets, constituted undue burden. Writing in her concurrence, Justice Ruth Bader Ginsberg noted that “Many medical procedures, including childbirth, are far more dangerous to patients, yet are not subject to ambulatory-surgical-center or hospital admitting-privileges requirements.” In addressing these clearly unnecessary requirements for safety, an important question that the Court also addressed was whether such restrictions, which would drastically reduce the number of available (from 36 to 8)⁷ abortion clinics in Texas proved “undue” as well, ruling that it did.

Dobbs gutted this precedent, this framework for considering the constitutionality of restrictions to access, thus abandoning any federal bodily autonomy protections. Whereas before, the Court was routinely asked whether certain restrictions to autonomy were warranted if they did not impose undue burden or could be shown to serve a state interest in protecting maternal health, the Court in Dobbs threw this out and declared there never was a constitutional right to abortion, even for medical reasons such as placental obstruction. This now imposes (in many states) dire constraints on the range of options available in cases where the fetus may have known health concerns, resulting in severe impediments on women’s realm of choices to act in her (and the fetus’s) best interest.

Fetal Therapy and the Expansion of Autonomy

Much of the decision-making framework for fetal therapy and NICU care, in contrast, is governed by the more “conventional” medical decision-making concept of autonomy, as well as informed consent and precaution. While fetal therapy, in its early discovery and development in the 1980s,⁸ originally seemed to be more dictated by a declared state interest in preserving prenatal life, Cao et al (2018) note that the paradigm has shifted to one with a more compelling interest in maternal life. They argue that “The United States has attempted to find a method of implementing both fetal and maternal rights with some success and failure, resulting in an ambiguous position; earlier cases imply favour to fetal rights, and subsequent events suggest maternal rights have returned to primacy.”⁹ As such, there is greater acknowledgement of the woman’s decision-making authority over her own body in this realm compared with abortion and compared with fetal therapy itself as it was originally practiced. Of note, abortions for fetal anomalies are exceedingly rare, representing roughly 1% of total abortions.¹⁰

Whereas in pre-Dobbs abortion law, the woman’s welfare was thought to be bound up in state protection and thus autonomy restrictions were sought in the name of “safety” (in reality, her health is better protected when abortions are widely accessible), the understanding in fetal therapy has been that the autonomy to decide over the surgery is itself what is in the woman’s interest. However, this was not always the case. Papers in the 1980s soon after the development of fetal therapy as a clinical option reveal real anxiety over the now threatened duties the woman has to the fetus and whether that would be sacrificed.¹¹ Some even questioned whether a woman had a moral duty to undergo surgery on behalf of the fetus.¹² However, by 2004, an advisory committee sponsored by the National Institutes of Health and the Office of Rare Diseases reframed the moral heart of the question as one in which the woman herself “reaps no direct benefit yet she incurs substantial risk.”¹³ Today, decision-making for fetal anomalies is often made on a case-by-case basis given the difficulties and uncertainty of prognosis, including whether the antenatally diagnosed anomaly is anticipated to be nonsurvivable.¹⁴

The question of whose interest is primary was answered quickly in the historical trajectory of both scholarship and medical practice: the mother’s obligation to the fetus does not extend to fetal therapy. This lesson is akin to the abortion rights defense that a woman should not be forced to be pregnant for the sake of the fetus. In her famous philosophical argument, Judith Jarvis Thompson uses an analogy to make this case: if in the middle of the night, you are hooked up to a machine that is connected to a famous musician that is keeping them alive, are you obligated to stay hooked up to the machine given that removing you will lead to the termination of his life?¹⁵ Thompson argues most people would reasonably say no, that there are necessary limits on what we require of our bodies in sacrifice for others. Why then, she posits, do we have a problem with abortion? Today, women have had near universal autonomy to decide on whether to do life-saving surgery on their fetus at a developmental age at which it would be impermissible to abort it, revealing a discrepancy given both could end it in its termination. The distinction between active and passive cessation of life may be morally relevant, as many have articulated applied to end-of-life decision-making,¹⁶ in understanding the cases we present insofar as abortion is active termination whereas cessation of care is a passive option, particularly when termination of life is highly likely. However, we do not think that this moral distinction plays the strongest role in how the legal regime has manifested, particularly since both decisions (termination and withdrawing care) are ultimately made to avoid trauma, often for all involved.

NICU Care and Deciding on Future Children

As in fetal therapy, the history of parental autonomy in the NICU reveals historical constraints which have been gradually transitioning to favoring of a broad “zone of parental discretion.”¹⁷ The most stringent historical restrictions were the Baby Doe rules which were based on the Rehabilitation Act of 1973 section 504. These rules, which stipulate that in order to receive federal funding, hospitals and physicians must provide maximal care to impaired infants, were created in response to the case of Baby Doe, who had both a correctable anatomic anomaly, a trachea-esophageal fistula, and Down syndrome.¹⁸ The parents of Baby Doe denied surgical correction of his trachea-esophageal fistula, presumably given his expected disabilities, and he died before the court ruled on this case.

Over the years since then, particularly through the early 2000s, there has been significant legal and moral controversy about how to understand and apply the “best interest standard” to premature infants.¹⁹ The restrictions are not frequently applied or discussed with patients consistently,²⁰ and like fetal therapy cases, as compared with abortion, judicial and legal framework play a smaller role in decision making.²¹ As John D. Lantos writes: “First articulated by a presidential commission on bioethics in 1983, the framework rules in favor of doctors’ responsibility to decide on course of treatment. When, according to medical expertise, treatment is clearly beneficial, the baby’s right to treatment outweighs the parents’ rights to make medical decisions for their baby. Less clear treatment benefits mean that ethicists (and courts) yield decision making to parents.”²² Lantos argues that since the 2000s, a new way of approaching decision making has featured a convergence on “shared decision making” in which the doctors offer significant information about outcomes, not hiding uncertainties or difficulties, but ultimately “parents’ decisions ought to prevail when decisions about treatment fall within the zone of parental discretion,”²³ a large decision making territory with borders marked by clear harm and unequivocal benefit.²⁴

The Baby Doe rules were intended to protect neonates from discrimination. The first set of Baby Doe rules stated that nontreatment could only be justified if one of three stated exceptions existed (infant was irreversibly comatose, treatment would merely prolong dying, or the treatment would not prolong the infant’s life and therefore be “inhumane”); otherwise, nontreatment was discriminatory and violated the infant’s civil rights. A year after their passing, in 1983, Baby Jane Doe was born and had spina bifida, hydrocephalus, kidney damage, and microcephaly. The parents were told that she would be severely disabled, partially paralyzed, and suffer from frequent kidney and bladder infections, and so the parents opted for palliative care rather than surgery. The ensuring dispute over whether to intervene made its way up to the Supreme Court, and in Bowen v. American Hospital Association (1986), the Court rejected the interpretation of the civil rights law that generated the first set of Baby Doe rules and “went on to offer a stinging criticism of the purposes behind these regulations.”²⁵

As Payot et al (2007) discuss, the Bowen Court viewed the initial rules as interfering with parental rights to consent or refuse treatment based on what they deemed to be in their infants’ best interest.²⁶ The Court also viewed these regulations as superficial in their approach to medical decision-making, because the degree of disability is relevant to making good life-sustaining medical treatment decisions. The Court concluded that these rules represented an unwarranted attempt to influence standards of care and that “no evidence of discrimination or discriminatory care was given.”²⁷ The Court also endorsed the best interests of the child standard in agreeing with the Appellate Division ruling that “concerned and loving parents had chosen one appropriate medical course over another and made an informed decision in the best interests of the infant.”²⁸

Other courts have also endorsed this standard, including the Appeals Court in Maryland in 2001 and the Supreme Court of Texas in 2003, who held that parents have the right to consent to or refuse treatments for infants and that other than in an emergency, a court order must be obtained to overrule parental refusals. They held that allowing parents to have the primary responsibility would promote the best interests, welfare, and safety of children, given the various circumstances and options that shape complex medical decision-making. Even in places where Baby Doe laws have not been removed, in practice, the best interest standard has overtaken Baby Doe. This has had disparate results, including the role of medical racism and inequality in access to good NICU care.²⁹ As Michael White writes, “the day-to-day decision-making process in almost all circumstances remains in the domain of the family and caretakers, with the normative practice to follow the best interests standard.”³⁰ One possible explanation for allowing parents greater autonomy in making postnatal decisions is that prognoses are more clear after birth. However, postnatal decision-making is also clouded by uncertainty about survivability.³¹ However, uncertainty remains a constant reality in efforts to offer prognosis for neonates so does not adequately explain the differences we observe in autonomy.

This, we can see now, sits in stark contrast with abortion law insofar as parental autonomy has been protected in making decisions on behalf of critically ill neonates. As we have seen in this analysis, even as rights and autonomy in fetal therapy and NICU have advanced, abortion has been increasingly restricted. The gestational ages at which these disparate trends effect fetuses/neonates are often overlapping and therefore do not explain the discrepancies. In the next section, we offer a more detailed social analysis to explore the reasons for these opposing trends.

Motherhood Theory

In the previous section, we showed that, beginning in the 1970s and 1980s and through today, reproductive autonomy constricted while parental autonomy expanded. Here we argue that this diverging trend is not random. While there are many reasons cited to restrict abortion, such as religious or fetal rights protections ones, or even an attempt to frame as protecting women’s welfare,³² these concerns are infrequently applied to post-natal decisions. In this section, we offer a social analysis to accompany the legal one to explore why legal trends for abortion versus fetal therapy and NICU care may conflict.

We contend that social views of the role of women as reproductive beings versus parents changes the way we think about their autonomy. When a woman seeks an abortion, she is seen as eschewing her predominant role of reproducing and caretaking, and subsequently judged under the restrictions imposed on abortion more generally, even if she terminates a desired pregnancy because of expected poor health of the fetus. However, if a woman decides against a fetal medical intervention, her choice is instead viewed through the lens of parenthood. She is seen to make a difficult choice in favor of her health, and in many ways the best interest of the fetus, rather than one that subverts her allotted identity or shirks her social role. Consider that supporters of abortion rights often share stories of those who had to terminate wanted pregnancies for medical reasons, and those who were denied abortions who suffered in tremendous pain.³³ These are the cases in which abortion is a necessary medical intervention, wherein the pregnancy was very much wanted but the medical viability and safety of it deemed abortion the best course of action.

Kristin Luker’s seminal 1984 work offers a detailed empirical and descriptive social inquiry into how the role of motherhood was extremely important to those who oppose abortion in the post-Roe years. In her book Abortion and the Politics of Motherhood, Luker examines the reasons for the fervor with which each side holds its views and how the issues have become pivotal dividers between the two major political parties. She argues that the act of abortion does not translate well into other medical realms because the motives are not related to the fetus: “While on the surface it is the embryo’s fate that seems to be at stake, the abortion debate is actually about the meaning of women’s lives.”³⁴ Her detailed analysis of the history of the self-proclaimed “pro-life movement” reveals a narrative that is replete with concern about women shirking their domestic duties and failing in the world of career men, finding that women who sought abortions were seen as “selfish”³⁵ given the natural order of gender roles. Luker writes, “In short, in a world where men and women have traditionally had different roles to play and where male roles have traditionally been the more socially prestigious and financially rewarded, abortion has become a symbolic marker between those who wish to maintain this division of labor and those who wish to challenge it.”³⁶

The history of birth control similarly reveals a complicated narrative regarding women’s access to the means to control her entry into motherhood in favor of choosing other life pursuits.³⁷ A world of abortion (and birth control) challenged the accepted roles of woman’s labor that “pro-life” activists found themselves in. Ultimately, Luker finds that “women come to be pro-life and pro-choice activists as the end result of lives that center around different definitions of motherhood.”³⁸ These divergent definitions, she writes, vary based on whether becoming a mother is the most important and meaningful identity for women or whether it is one of only several other roles. Given that much of the contemporary anti-abortion movement was borne out of this, much of the reasoning is still there.

Other scholars have also supported this continued throughline in anti-abortion activism,³⁹ noting the “centrality of motherhood to woman’s identity”⁴⁰ and the connection between women’s economic, political, and social inequality with men as explained and upheld by understanding women’s access to abortion.⁴¹ Mary Ziegler has similarly shown how other issues are also bound up in the discourse on abortion, namely the work to retain women’s central role as caretaker, such as by barring affordable daycare and the equal rights amendment, showing that “Caretaking-based rationales for abortion rights have become increasingly prominent in the Supreme Court’s abortion jurisprudence, as well as in abortion-rights litigation.”⁴²

Those who support abortion rights have, in contrast, emphasized the medical model of its importance. In the language of Roe, the Court understood reproductive autonomy to occur in the relationship between doctor and patient, recognizing “the right of the physician to administer medical treatment according to his professional judgment up to the points where important state interests provide compelling justifications for intervention.”⁴³ The Court defined that point as primarily at viability. Abortion legalization supporters have also routinely emphasized that pregnancy and childbirth bear more risks than abortions⁴⁴ and by showing, as argued above, that the various state laws that have restricted access to abortion in the name of safety, such as by requiring ambulatory wide hallways and hospital admitting privileges for abortion providers, do not have good evidentiary basis.⁴⁵ In Gonzales v. Carhart (2007), questions over the abortion procedure intact dilation and extraction (D&X) were also raised around safety, and those in support of continuing its use showed that it is often the preferred procedure for particular medical cases.⁴⁶ Consider further that much of the politics around late-term abortions (20-weeks or later, which constitute about 1% of all abortions) convey the sense of medical urgency that women have at those stages as a reason for abortion.⁴⁷ Their testimonials reveal the heartbreak of a pregnancy “gone wrong,” including for conditions such as malformation of the brain and organs that make rehab and medical intervention highly unlikely to create good quality of life.⁴⁸ Similar stories are told in the NICU when decisions against intervention are made.⁴⁹

Despite these similarities, fetal therapy and NICU decisions have been placed squarely in the realm of this medical model, while abortion has not. As stated before, if those who fought abortion so strongly were truly interested in the welfare of the fetus or the resulting child, we should see a political alignment with an expansion of medical care for them, rather than fighting it, given that lack of childcare is one of the main reasons for abortion.⁵⁰ We would also see fewer exceptions to abortion restrictions for rape or for incest – if we are protecting the fetus, why should the cause of pregnancy matter?⁵¹ Consider further that adoption as a viable alternative was preached so strongly in the oral arguments of Whole Woman’s Health: it presumed that all women were doing was trying not to raise children as opposed to not be forced to remain pregnant.⁵²

And yet, what seems to explain the profound disconnect between autonomy for abortion versus fetal therapy and NICU decisions is that abortion is still seen to represent a woman’s eschewing of motherhood while the other types of decisions represent those of someone who embraces and acts as a parent. In recognition of this, another throughline of abortion access scholarship has been to highlight the ways in which men are also affected by the ability of women to access abortion, namely in helping them also to abstain from the responsibilities of parenthood, and also in the interest of the care and wellbeing of the women in their lives.⁵³

Conclusion

Whereas the Dobbs decision gutted the protection of maternal autonomy, the fetal therapy and NICU landscapes increasingly protect the rights of the woman first (before the neonate or fetus) in accordance with other standard concepts of medical ethics such as bodily integrity. This leads to the discrepancy identified in our main argument: a woman is often constrained in her choice to determine the trajectory of fetal life while it is in her body, but once a child born, she may do so even at the same point in development and with similar odds of successful treatment.

In abortion we observed a declared “compelling state interest” in protecting fetal life, and the protection of reproductive rights to the extent they do not violate this interest. In contrast, in fetal therapy, we found that protection of the woman’s control over her body comes first, with fetal life a secondary consideration. And in NICU care, parental rights are separate from the interests of the premature infant now that the woman and baby do not share a body. Decisions relating to abortion, fetal therapy, and NICU care may emerge at overlapping gestational times, but whether the fetus/baby is born changes how we think about the fetus/baby’s and mother’s interests. Motherhood, the rejection of it v. the exercise of its responsibilities, plays a strong role in explaining these divides.