## 1. Medicalization



Pregnancy and childbirth have become increasingly *medicalized*
in most parts of the world since the early twentieth century. That is,
they are increasingly processes that--in fact and as a social
ideal--are managed and overseen by medical professionals,
typically involve a high degree of technological medical intervention
and contact with clinics and hospitals, and are assessed by medical
experts who are the authorities on their progress. Amy Mullin explains
that medicalized pregnancy "involves interpreting pregnancy
itself as a disruption to health that necessarily requires expert
medical intervention, and thinking of pregnancy as primarily about
health and illness" (Mullin 2005, 54). The concept of
medicalization is helpful in making clear how this sort of insertion
into a medical context is not (or not simply) a response to fixed
biological facts, but rather a contingent social and institutional
process. Death, depression, and short attention span are other
examples of processes or conditions that have undergone intense
medicalization. In general, medicalization comes with both benefits
and burdens, and the medicalization of pregnancy and birth is no
exception. Increasingly few obstetricians would claim that intense
medicalization straightforwardly promotes good birth outcomes for
mothers and infants; rather, almost all would acknowledge that while
medical interventions have lessened many risks (e.g. death from
placenta previa and ectopic pregnancy), other medical interventions
have become routine despite having no proven benefit and some proven
added risks for patients (e.g. routine fetal monitoring, normalization
of the lithotomy position for childbirth, and episiotomies). Partly
because of these mixed effects of increased medicalization, opposing
narratives of pregnancy and birth continue to grow in visibility and
support. These narratives may aim to de-medicalize the notion of
normalcy in pregnancy and birth, or centralize the knowledge and
competence of midwifery (e.g., Lyerly 2012; Shaw 2013)



The medicalization of pregnancy and birth takes many forms. North
American births typically involve a variety of technological
interventions, regularly including labor-inducing drugs, spinal
epidurals, fetal monitoring, and--in roughly one third of
births--surgical delivery. Prior to birth, most pregnancies will
involve medical interventions such as genetic testing, ultrasound
screening, prescriptions to control various symptoms and risks,
and--with increasing frequency--technological assistance for
conception. Importantly, however, the rate and intensity with which
such interventions are offered or imposed is far from uniform. Dorothy
Roberts highlights the striking disparity of benefits enjoyed as a
result of medicalization: "The multibillion-dollar apparatus devoted
to technologically facilitating affluent couples' procreative
decisions stands in glaring contrast to the high rate of infant death
among black people, which remains more than twice the rate for whites"
(2009, 784, citing Mathews and MacDorman 2007). Some dimensions of the
medicalization of pregnancy do not directly involve medical
interventions. Both inside and outside the clinic, pregnancy is
treated as a medical event requiring intense risk management,
monitoring, and appeals to expert medical knowledge: pregnant women
are expected to regulate and monitor their eating, drinking, fetal
kicks, weight gain, sleeping position, emotions, exposure to basic
household products, exercise, sexual activity, and many other aspects
of their lives according to standards established by medical
professionals (Kukla 2005). Recently, there has been a vigorous
mandate to involve medical professionals in helping women regulate
their bodies in accordance with medical standards for minimizing
reproductive risk even prior to conception. The CDC now recommends
that *all* primary care for *all* women who may
eventually become pregnant (including prepubescent girls) be treated
as 'preconception care' (Kuehn 2006). A majority of women
embrace at least some aspects of medicalization; many take it as part
of responsible motherhood to maximize the expert management of their
pregnancies and to follow risk-minimization advice carefully (Seigel
2013).



The general trend towards medicalizing pregnancy and birth has had
several ethically noteworthy effects (Davis-Floyd 2004, Duden 1993,
Mitchell 2001, Morgan 1998, Sherwin 1992). First, medicalization has
encouraged us to imagine pregnancy and birth as inherently high-risk,
pathological processes that it is irresponsible to undertake without
large amounts of expert help and surveillance. Second, when medical
professionals become the primary managers of reproduction, pregnant
women's epistemic privilege is undermined and they are arguably
reduced to playing passive roles in their own pregnancies and births
(e.g., Freeman 2015). Third, some have argued that medicalization has
rendered pregnancy in general, and labor and birth in particular, more
alienating and stressful for women, burdening them with constant and
complicated responsibilities for elaborate risk management and bodily
and behavioral surveillance (for review see, e.g., Mykitiuk and Scott
2011; Savell 2012).



Among the voices pushing back against the medicalization of
reproduction are those that insist that pregnancy is a
'natural' process that generally needs no technological
assistance, and advocate 'natural' childbirth, free of
labor-inducing and pain medications and attended by midwives rather
than doctors. There are reasons for philosophers to be as wary of the
'natural' birth movement as of uncritical, unchecked
medicalization (Kukla 2005, Lyerly 2006 and 2012, Purdy 2001).
Typically, its advocates do not specify a clear concept of the
'natural'--for example, they have no account of why
prescription pain medications are 'unnatural' while
acupuncture or pain-relieving herbs are 'natural'. Nor do
they explain why the 'natural' is *prima facie*
better or more ethical. More broadly, this account of pregnancy and
birth involves comparable pressures on pregnant women to conform to
rigid standards of attitudes and behaviours, and, like the medicalized
account, is in danger of de-politicizing and essentializing the
experience and management of pregnant women (Beckett 2005, Malacrida
and Boulton 2014).



Frank Chervenak and Laurence McCullough (2006) contrast
medicalization, not with an absence of technological interventions,
but with the co-option of these technological interventions by the
non-medical sphere of commodification. They focus on the upsurge in
"boutique" fetal ultrasound centers that offer expectant
parents "pictures of the baby", without any pretence that
these pictures serve a diagnostic medical role. They argue that such
non-medical, social imaging is ethically unacceptable, as it raises
concerns about informed consent, psychosocial risks to women, false
senses of security in the health of the baby, and economic conflicts
of interest. They conclude that medical professionals ought to retain
control and authority over the use and interpretation of fetal imaging
technology. Their argument could easily be extended to other
technologies used in obstetrics.



Yet Chervenak and McCullough may overestimate the authority that
medical professionals are generally able to exercise over the meaning
and use of technology. For instance, ultrasound imaging is already
viewed by pregnant women as playing much more of a social than a
medical role; whether it occurs in a medical clinic or at a boutique
parlour, it is primarily understood as the first opportunity to
"meet the baby", and women are caught off guard when this
event yields substantive medical information (Mitchell 2001, Kukla
2005a). All the same, their argument raises an important point: the
alternative to medicalized pregnancy is not, in practice,
'natural' pregnancy. Instead, medicine is one institution
among many that vies for control over the cultural use and
significance of this technology, and pregnancy is likely to continue
to be technologically intensive no matter how his struggle plays
out.


## 2. Ethical Issues in Obstetrical Care



In this section, we examine ethical issues that can arise in the
course of obstetrical care for women whose decisional autonomy and
competence are not in question.


### 2.1 Prenatal Diagnosis and Screening



It is becoming increasingly routine to test fetuses for a variety of
genetic and other anomalies. Ultrasound screening for various
morphological anomalies and the Maternal Serum Alpha-Fetoprotein Test
(MSAFP) that screens for trisomy chromosomal disorders such as Down
syndrome are routine parts of prenatal care; indeed, ultrasound
screening does not even require formal informed consent from patients.
Other tests such as amniocentesis (which diagnoses rather than screens
for trisomy disorders) and genetic testing for Tay-Sachs disease are
common. More arcane tests are available, and it seems clear that the
range of conditions and traits for which prenatal testing is possible
will continue to grow rapidly. The rise in prenatal testing allows
parents and society at large new forms of control over what sorts of
children are born, and it enhances the level of medicalization and
surveillance during pregnancy. These tests raise a variety of ethical
issues.


#### 2.1.1 Issues for Pregnant Women



Because all prenatal testing is, strictly speaking, voluntary (even if
routinization and social pressures together may guide women towards
choosing it), and because the tests give prospective parents a form of
increased control over their reproductive lives, many writers have
seen the advent of prenatal testing as straightforwardly enhancing
women's reproductive autonomy. For instance, John Robertson (1996) has
argued that women should have access to any technologically available
prenatal test as part of their right to reproductive autonomy and
privacy. On his account, reproductive autonomy rights cover not only
when and whether and how we reproduce, but what *kind* of child
we have, and the availability of prenatal tests increases this
autonomy.



There are reasons to doubt, however, that increased access to prenatal
testing translates directly into an increase in women's autonomy. For
example, soon after Robertson argued for women's autonomous control
over which tests they use, Julian Savulescu appealed to what he dubbed
the principle of "procreative beneficence" in order to
argue that pregnant women are morally *required* to utilize
available tests for serious fetal anomalies (and to abort fetuses with
these anomalies), because they are required to select the child, of
the possible children they could have, who is expected to have the
best possible life given the available information (Savulescu 2001,
2007; Savuelescu and Kahane 2009). Others argue that reasons to select
for the best possible children extend beyond concern for the
well-being of the potential child herself to the well-being of others
(Douglas and Devolder 2013, Elster 2011).



Prenatal screening and diagnosis does not, at the very least,
obviously or in principle operate to enhance free choices for women.
Virtually all women undergo routine ultrasound testing and accept
MSAFP testing when it is offered to them. Nancy Press and Carole
Browner (1995) have used qualitative evidence to argue that women tend
to see the choice to accept MSAFP tests as the
"responsible" choice that "protects the
health" of their babies, even though the only intervention
available in the case of a positive test is abortion. When a test
becomes routine and medically legitimized, choosing against it can be
difficult. In light of such considerations, Press and Browner and
others have questioned the extent to which choices to test are really
informed and autonomous, and whether women are really prepared for
making the difficult decisions that they may confront after testing.
Many authors have also pointed out that as testing and abortion for
fetal anomalies becomes more common, women who choose not to test, or
who choose to carry an impaired fetus to term, may face diminished
support and increased blame for their choice (see for instance Lawson
2003). Thus the availability and routinization of prenatal testing may
compromise women's autonomy in some ways while increasing it in
others.



Several authors have pointed out that increased routine medical
surveillance during pregnancy has put new pressure on women to
shoulder the responsibility for producing socially acceptable,
productive citizens, and for disciplining their own bodies and laying
them open to medical intervention and surveillance in accordance with
this goal (Tremain 2006, Kukla 2005, Roberts 2009). Prenatal testing
joins forces with a host of other cultural pressures to portray
pregnancy as an inherently risky and perilous process (Duden 1993). It
can create unrealistic pressures on women to emotionally bond with or
disengage from their fetuses on cue (Kukla 2007a, Kukla 2008, Mitchell
2001), and to keep their relationship to the pregnancy
'tentative' until tests come back negative (Katz-Rothman
1993).


#### 2.1.2 Issues for Future Children



A variety of ethical concerns have been raised with respect to how
prenatal testing may impact future children. Some authors worry that
prenatal testing helps to inculcate an inappropriate stance towards
parenting: perhaps parents will come to desire or expect
"designer children" built to their specifications, and
this may translate into an overly controlling attitude towards their
children later in life, or an expectation that children will match an
advance set of idealized expectations about what they will be like
(Rothschild 2005, Introduction to Parens and Asch 2000). A related
concern is that when carrying pregnancy to term becomes conditional
upon the fetus having certain traits, our love for our children once
they are born may become similarly conditional. Most broadly,
questions regarding how prenatal screening and testing impacts the
well-being of future children remain unresolved. At the moment, almost
all prenatal testing screens or diagnoses well-defined medical
disorders such as Down syndrome and Tay-Sachs disease. Ethical
concerns will likely become yet more acute as the technology develops,
particularly if it extends to testing for traits that are not clearly
disorders, such as homosexuality, aggression, or a propensity to
obesity.



Prenatal testing is often presented, in medical practice and in some
bioethical literature, as protecting the well-being of children. It is
often argued that it is wrong to bring a child with a disability into
the world if we can prevent doing so (i.e. Savulescu 2001 and 2007,
Davis 2001). However, this claim faces the much discussed
"nonidentity problem", which was introduced by Derek
Parfit (1976, 1984) and adapted to the reproductive ethics context by
many authors (e.g., Steinbock 2009, Wasserman 2005, Brock 1996) (see
the entry on "The Nonidentity Problem"). In short, the
problem is that you cannot harm a non-existent person by bringing it
into existence, unless the person's life is so dreadful that
nonexistence is preferable. That life with a disability or chronic
illness is predictably worse than non-existence is not plausible for
most of the defects for which we test--notably including Down
syndrome, which is the most common target for testing and abortion.
Some philosophers take an antinatalist stance and argue that human
life in general is prima facie worse than non-existence (e.g., Benatar
2006), but it is a far more widely held stance that bringing a child
into existence does not typically count as harming that child.



This may sound like a straightforward point, but it leads quickly to
results that many find philosophically puzzling or implausible. For
example, if a woman is carrying twins and requires a selective
abortion, and one of the fetuses is known to have a serious anomaly
while the other does not, many people feel it would be cruel to choose
to keep the fetus with the anomaly. And yet, the fetus with the
anomaly does not itself have the option of becoming an anomaly-free
child; it will either become a child with a disability or not exist at
all. We can be doing this child no harm by choosing it over its
healthy twin, and its twin, if it counts as a being that can be harmed
at all by being aborted, is not harmed in any extra way in virtue of
having a twin who will live with an anomaly. Even more
counterintuitively: imagine that a woman is taking a medication that
is almost sure to cause substantial limb deformities if she gets
pregnant while taking it, but that leaves her system completely within
24 hours. Imagine also that she takes her last dose on Tuesday
morning. She wants a child, and finds herself with an opportunity to
have unprotected sex on Tuesday evening. She will have the same
opportunity on Wednesday. If she has sexual intercourse and conceives
on Tuesday, her child will almost certainly suffer from limb
deformities. If she waits 24 hours, her child suffers no unusual
risks. Most of us feel that it would be callous and unethical of her
to have unprotected sex on Tuesday. But why, exactly? Any child she
conceives on Tuesday will have limb deformities, but its other
'option' is nonexistence, and limb deformities, while
burdensome perhaps, certainly don't make a life not worth living. She
does not wrong the *child* by having unprotected sex on
Tuesday. Nor does she harm any nonexistent child that she might have
brought into existence, limbs intact, on Wednesday, for you cannot
harm a nonexistent being. Variations on this problem and its practical
and theoretical implications have been widely discussed and continue
to feature in heated debates in bioethics (e.g., Boonin 2014, McMillan
2014, Jecker 2012)



Indeed, even going out of one's way to create a disabled child
(through genetic engineering, selective abortion, or preimplantation
genetic diagnosis) cannot count as harming the child, since that
particular child has no options for existing other than as disabled.
(This issue has most often come up with respect to deaf parents, who
sometimes prefer to have a deaf child, e.g. in Wasserman and Asch
2012). And yet, many writers have the strong intuition that
intentionally creating a disabled child is a wrong done *to the
child*--for instance, Dena Davis (2001) argues that since
disabilities generally close down possible ways of living,
intentionally creating a disabled child violates the child's right to
an open future. The non-identity problem forces us to search for an
explanation of what sort of wronging or rights violation this could
be, given that *this* child could have no non-disabled future
open to her to start with.



Responses to the non-identity problem, then, may conclude that (1)
indeed there is no wrong done by bringing someone into the world in a
way that compromises her opportunities for flourishing (Heyd 2009), or
that (2) the wrong involved is not one done *to the
child*--for instance, it might be wrong on roughly
consequentialist grounds (Brock 1995), because it promotes problematic
values or reflects unacceptable motivations (Kumar 2003), or because
it fails to promote the interests of an alternative possible child
(Holtug 2009), or (3) that the non-identity problem is illusory, and
that someone can indeed be harmed by being brought into existence
(Benatar 2006, Harman 2004). As Roberts and Wasserman (2009) note,
different strategies for resolving the non-identity problem emerge
from different accounts of harm--e.g. as concerning states of
affairs, or as (uniquely) concerning identifiable
individuals--and will therefore have distinctive implications for
obligations of beneficence and non-maleficence in reproduction. For
some commentators, however, debate surrounding the non-identity
problem carries tenuous import for real-life procreative
decision-making, and offers little help to prospective parents in
addressing the ethical challenges associated with reproduction (e.g.
Overall 2012, 154). A strategy for addressing the non-identity
problem, then, is not equivalent to a strategy for addressing the
challenges of harms and benefits to future children for prospective
parents. (See the entry on
 parenthood and procreation
 for further discussion). 


#### 2.1.3 Social Concerns



Many have worried that the increasing routinization of prenatal
testing is tantamount to eugenics. As the term is paradigmatically
used, eugenics involves an intentional, top-down planned social
program for engineering an entire population so as to eliminate or
propagate particular traits. John Robertson (1996, 2003), who defends
a strong version of the right to procreative liberty, defends prenatal
testing against charges that it should be understood as ethically
equivalent to eugenics by emphasizing the role of individual,
autonomous parental choices in controlling this technology. Likewise,
those supporting a moral obligation to have children with the best
possible lives using available technological means tend to
simultaneously emphasize the individual, personal nature of
procreative decision-making (Mills 2011). Yet some doubt that any
genuine procreative freedom is preserved when prenatal testing is
treated as required (e.g., Sparrow 2011). Moreover, many have argued
that as our culture increasingly values and takes for granted the
power to control whether our offspring have particular traits, a kind
of bottom-up eugenics will be instituted. Declining control and
accepting devalued traits in our children will become a less socially
acceptable choice for prospective parents, and some homogenization of
the gene pool and elimination of diversity will emerge regardless of
whether this is anyone's planned agenda (Tremain 2006, Rothschild
2005). Furthermore, while individual parents may be free to decide
whether or not to avail themselves of tests, which tests we make
available will almost surely reflect and entrench existing social
norms that tell us what count as valuable and disvaluable traits
(Sparrow 2007). Thus, the argument goes, individual decisions to use
these tests will collectively instantiate a eugenic project of
designing a population that reflects these values, even if this
project does not belong to any centralized intentional agent. On the
other hand, it seems that we already engage in such
'bottom-up' eugenics by taking steps to have children with
valued traits: pregnant women take folic acid in order to avoid having
a child with Spina Bifida, we try to find successful and attractive
mates, and so forth (Mahowold 2002). Hence we need to settle whether
making prenatal testing widely available introduces eugenics in a new
and problematic way, and if so, whether this worry is sufficient to
override its advantages.



There are additional reasons to worry about the distortion of the gene
pool that may result from long-term, routine prenatal testing. In a
classic paper, "Moral Issues in Human Genetics", Ruth
Macklin (1977) points out that homogenizing or otherwise manipulating
the gene pool may have dangerous effects that we do not presently
understand and can't foresee. We don't know enough about how specific
genes and mutations work to understand how they may be advantageous or
disadvantageous at the population level. Furthermore, in eliminating a
particular individual with some specific trait, we might be
accidentally eliminating someone who has other traits that would have
made her an exceptionally valuable member of society and contributor
to the gene pool. (What if we had selectively aborted Abraham Lincoln
in virtue of his Marfan syndrome, she asks? The fact that Lincoln
probably did not have Marfan syndrome is beside the point.)



Assuming that we believe that some, but not all, prenatal tests should
continue to be available, at least in certain circumstances, we need
to ask a host of more specific questions. We need to decide which
traits and conditions we *ought* to be testing for (perhaps
incurable and painful life-shortening diseases such as Tay-Sachs;
perhaps a broader set of traits) and which traits it is
*permissible* to test for (perhaps less serious conditions such
as Down syndrome and Huntington's disease; perhaps a wide variety of
non-medical traits). We need to settle which, if any, of these tests
will be covered by insurance (as prenatal testing for Down syndrome,
ultrasound screening, and other tests currently are), and how we want
to manage the consequences of prenatal testing for later insurability.
We need to decide whether procreative liberty and privacy rights give
parents the right to test their fetuses for what we might consider
morally unacceptable reasons--for example, in order to abort
their fetus if it has a 'gay gene', should such a thing be
discovered. We also need to consider the consequences of prenatal
testing for genes that probabilistically raise the risk of developing
a condition (such as obesity or breast cancer) rather than determining
that it will be present. Finally, we must decide how we will manage
and control the genetic information that results from prenatal tests,
which can have significant consequences for other, genetically related
family members who might have a strong stake in knowing *or* in
not knowing this information. All of these questions are receiving
vigorous discussion in bioethics; disagreements have pervaded
discussions among scholars, health care practitioners, and disability
advocates. (A classic source that discusses all the above issues is
Buchanan et al. 2000. Other widely cited authors and collections
contributing to these discussions include Harris 2010 and Shakespeare
2006.)


#### 2.1.4 The Disability Rights Critique of Prenatal Testing



The disability critique of prenatal testing constitutes a large,
loosely bound cluster of arguments that draw upon disability rights
theory and activism in order to critically question the increased
routinization of prenatal testing and selective abortion (Asch and
Wasserman 2015, Parens and Asch 2000). In general terms, the
disability rights critique raises the worry that prenatal testing and
selective abortion risk further stigmatizing disabled people, reducing
them to a single defining trait, and harming disability communities.
It points out that the *offer* of a prenatal test for a
particular trait is never neutral, but rather implies that a
reasonable person might wish to know whether her fetus has this trait,
and that this information might reasonably be the basis for a decision
not to continue the pregnancy. Although many contributors to the
disability rights critique of prenatal testing consider themselves
firmly in favor of general abortion rights, they share at least a
*prima facie* worry about the ethics of aborting fetuses on the
basis of tests for future disability.



The disability critique of prenatal testing encompasses at least five
types of arguments:


1. Entrenchment of the Medical Model of Disability
  

Disability theorists have most visibly distinguished between the
medical and the social model of disability, but sometimes use related
labels such as the metaphysical, the biological, and the political
model of disability (for discussion see, e.g., Scully 2008,
Shakespeare and Watson 2001). According to the medical model, a
disability is a pathology or impairment of an individual body, in
virtue of which the disabled person is less able to perform various
functions than the able-bodied person. Accordingly, since it is the
job of medicine to fix bodies or at least minimize the undesirable
effects of their medical conditions, it is appropriate for doctors to
fix or mitigate disability when they can (Saxton 2000). According to
the social model, on the other hand, disability is inherently a
*relational* property: it concerns a more problematic than
normal fit between a body and its social and material environment.
Disabilities are historically specific and context-dependent (Tremain
2001). Someone who used a wheelchair in an environment in which
*all* spaces accessible to any normal person are wheelchair
accessible, the argument goes, would be no more disabled than is a
resident of a sprawling American suburb who cannot obtain food or make
a living without driving her car. Myopia was a serious, even a
life-threatening disability in the hunter-gatherer era, but in the age
of easily accessible effective eyeglasses most of us never even think
to conceptualize our myopia as a disability.



If disability is a relational misfit between body and environment,
then mitigating or eliminating disability can be accomplished by
changing the body, the environment, or both. On this view, making
spaces accessible to people with different means of mobility, ensuring
that everyone has access to text-based communication options, and
working to remove social stigmas concerning abnormal anatomy, for
example, literally lessen or remove disabilities such as mobility
impairment, deafness, and cleft palate rather than merely
accommodating them. (This is not to say that *all* disabilities
are such that we could design an environment that would substantially
mitigate them.) In the proper environment, what might otherwise be a
disability can just be a difference, a human variation that can
enhance the diversity of our culture (Wendell 1996). Once we accept
this, then we are faced with a choice when it comes to managing a
particular disability: we can try to change bodies, social and
material environments, or a combination of these, and it is an open
question in each case which is the most effective and ethical
approach.



The routinization of prenatal testing arguably institutionalizes the
idea that disability is a medical condition detected at the level of
the individual body. Furthermore, insofar as the standard response to
prenatal testing is abortion, it entrenches the practice of
'fixing' disability through a medical
intervention--specifically, the extreme intervention of simply
eliminating the disabled body. According to the disability rights
critique, this limits our ability to imagine addressing and
alleviating disability at the social level. Yet in at least some
cases, social approaches to disability have proven enormously
effective. Consider Down syndrome, which is the main condition for
which prenatal testing has become routine: Due to increased
integration into families and schools, better support and education,
changing expectations, and other social changes, people with Down
syndrome now often have life spans and a level of independence and
educational achievement that were inconceivable fifty years ago.
Moreover, as Sophia Isako Wong illustrates, the social model's
encouragement of integration, understanding, and acceptance may have
significant positive impacts on non-disabled individuals, and on
communities more generally (2002). Thus disability theorists and
advocates urge us to reject the assumption that prenatal testing and
abortion should be the default 'solution' to
disability.
2. Weakening the Disability Community
  

To the extent that prenatal testing and abortion for a particular
condition become routinized, there will be fewer people born with that
condition. Insofar as prenatal testing and abortion are generally
cheaper and easier than social interventions, over the long term they
may come to be seen as the only responsible and socially supported
option. This threatens the quality of life and availability of
resources for those who remain. They may be faced with increased
stigmatization, less possibility for community, and less tolerance and
understanding. Some commentators, however, deny that things have
gotten worse for people with disabilities since selective abortion of
fetuses with impairments has gained popularity (e.g. Overall 2012,
166). And if efforts to accommodate persons with impairments are
increasing, charges against prenatal testing for further weakening and
marginalizing the disability community may be complicated if not
diminished. Nevertheless, the fruits of those efforts at accommodation
are not enjoyed equally by all. For instance, the rarer a condition
is, the less social and political motivation will exist to provide
resources, support, tailored educational activities, and the like for
those who have it.
3. Our Current Counseling Practices Distort Decision-Making
  

Currently, a large majority of pregnant women who are offered standard
prenatal screens and tests accept them, and the majority of those who
receive abnormal test results proceed to abort. However, current
counseling surrounding the tests does not include any exposure to
people who have the tested-for conditions or any discussion of the
social resources available for families with children with the
conditions. Even supposedly nondirective counseling often uses
stigmatizing language to talk about disability and the choice not to
abort a fetus with a disabling trait, and reflects unsupported
negative judgments regarding the abilities of and quality of life for
persons with disabilities (Asch 2000, Madeo et al. 2011). Different
forms of counseling might enable more informed decision-making and
yield fewer choices to test and fewer choices to abort after testing.
For instance, Bonnie Steinbock (2007) argues that prenatal testing
practices for some conditions could be geared towards helping parents
prepare for the birth of a child with that condition, rather than
framed as preludes to a decision about abortion. In order for
genuinely informative and trusting interactions to take place between
counselors and prospective parents, however, counselors must be
equipped with "disability competencies," which involve experience with
disabilities and understanding of how various disabilities affect
lives and families; improving counseling practices will require
mandatory training in these areas (Sanborn and Patterson 2014).
4. The Expressivist Argument
  

This argument holds that prenatal testing, particularly as linked with
selective abortion, has *expressive meaning* for
*everyone* with that condition. Abby Lippman writes:
"That the birth of certain babies should be avoided is announced
merely by making testing available" (1994, 24). If we abort a
fetus on the basis of a single trait, this symbolically suggests that
not only this fetus's life but the life of *anyone* who has
this trait is not worth living or preserving. Prenatal genetic
testing, as disability rights critics suggest, thus perpetuates and
reinforces denigrating social attitudes toward persons with
disabilities (e.g. Saxton 2000). One might argue that *any* use
of prenatal testing for a condition followed by abortion expressively
devalues that condition. Or, one might argue that it is the
*routinization* of testing--the practice of checking for a
condition and making abortion available as a 'normal' part
of 'responsible' prenatal care--is what has
expressive devaluing significance.



Not all disability theorists agree that prenatal testing does indeed
send a discriminatory message, or that it expresses anything specific
at all (e.g. Malek 2010). James Nelson (2000) tells the story of
choosing to get a vasectomy after his third child. He argues it seems
implausible to understand his act as having an expressive significance
that devalues all fourth-children. Rather, his act may just
'mean' that, in context, having a fourth child is not the
best choice for his family. Whenever we decide not to have a child, he
argues, we *always* do so based on some *specific*
features it would have, such as adding to a large family with strained
resources. Likewise, he claims, choosing not to carry a pregnancy to
term after a prenatal test revealing a particular condition may
reflect a judgment about particular circumstances rather than
expressing a general attitude towards people with that condition.



Adrienne Asch (2000) responds that one cannot relevantly compare the
property of being a fourth child to the property of having a specific
disabling trait, because the latter is an inherent rather than a
relational property of the child. Hence to abort on the basis of the
disabling trait is to reject that kind of person in a different and
stronger way. But Asch's response seems to push against one of the
main points of the social model of disability, which she otherwise
defends: the view that disabilities are also relational rather than
inherent properties. More generally, the force of the expressivist
objection may rely on a view of disabling traits as identity
constituting, thereby endorsing an essentialist understanding of
disability (Edwards 2004). For many, it seems possible to decide
against bearing a child who has a property that *in context*
will make that child more difficult to raise (whether it is deafness,
a chromosomal disorder, or fourth-childness), without devaluing all
people with that property in any decontextualized way. Notice that
this response does not combat the idea that routinization is
expressively devaluing of some lives, even if it convinces us that
individual uses of the technology are not.
5. Parental Attitudes and Responsibilities
  

Some disability rights critics suggest that prenatal genetic testing
encourages an inappropriately commodifying and perfectionist approach
to potential children, and stultifies parental expression of
unconditional love and commitment (Asch and Wasserman 2005). By
allowing particular traits to determine reproductive decision-making,
potential parents adopt an attitude of conditional acceptance that is
directly at odds with the nurturing and devotion children need to
flourish. Others, however, question the requirement of so-called
unconditional love, given that this requirement has developed in a
context where mothers are judged by the completeness of their
caregiving roles, and where other social factors impeding good care
and acceptance are ignored (e.g. Gedge 2011).



A familiar concern with the disability critique of prenatal testing is
that it asks too much from prospective parents. Even if there are good
reasons to worry about the impact of widespread testing, it is hard to
deny that for many people, given the level of support and acceptance
available for families with disabled children, raising a child with a
disability can be a serious challenge. Asking parents to take on this
challenge so as to promote larger social goals may be unreasonable.
Yet some critics of prenatal testing reject the assumption that
bearing and raising a child with a disability is inevitably more
burdensome than raising a non-disabled child. Marsha Saxton, for
instance, counters the purportedly feminist endorsement of prenatal
testing that casts testing as a protective or even emancipatory tool
for women. She argues that it is not disability itself that burdens
women who have disabled children, but rather the unjust circumstances
of caregiving, where ongoing sacrifices are expected from mothers, and
community resources and support remain woefully inadequate (2000,
2006).



Disability theorists have worried that it seems nearly impossible, in
practice, to draw a line between acceptable and unacceptable tests.
Nearly all scholars agree that testing for Tay-Sachs or other diseases
that lead to a short life filled with intense suffering and no hope of
a cure is ethically acceptable, and nearly all agree that testing for
vanity traits such as eye color would be unacceptable. But when it
comes to deciding which conditions are 'serious' enough to
warrant the availability of prenatal tests, there is little agreement.
Anywhere this line is drawn risks stigmatizing those with
'serious' conditions and belittling the challenges faced
by those with 'unserious' conditions (Parens and Asch
2000, Introduction). It also risks treating the
'seriousness' of a condition as a fixed medical fact
rather than as a potentially socially malleable state of affairs. This
is another reason that many scholars and advocates wish to emphasize
the stigmatization of particular traits and the layers of social and
economic injustice that exacerbate this stigmatization(e.g. Roberts
and Jesudason 2013, Wasserman 2000).


#### 2.1.5 Non-Invasive Prenatal Testing



The recent advancement of so-called non-invasive prenatal testing
(NIPT) has complicated existing ethical issues and introduced new ones
in obstetrical care, and some believe that current normative
frameworks for assessing prenatal testing are ill-equipped to navigate
these issues (Schmitz 2013). The past decade has seen enormous changes
in testing technologies, and non-invasive prenatal testing is a
striking example of how rapidly new testing methods translate to
clinical and commercial enterprise (Skirton and Patch 2013). Most NIPT
targets aneuploidy; some tests for monegenic disorders are also sought
after but development and clinical uptake of these is relatively slow
(Chitty and Bianchi 2013).



Several ethical concerns piggy back on those associated with prenatal
testing generally; for instance, earlier and less risky testing may
facilitate selective abortions, encourage the commodification of
children, or, conversely, amplify the coercive technological force of
prenatal testing as a medical intervention required for responsible
parenting (de Jong and de Wert 2014). Each of these concerns picks up
on the likelihood of greater routinization of prenatal testing given
the tests' non-invasiveness, low medical risk to the pregnant woman
and fetus, and high accuracy. Some commentators worry that these
features of NIPT, particularly its lower medical risk, may serve to
justify loosening, limiting, or even discarding informed consent
requirements (e.g., Deans and Newson 2011). Other problems with
increased routinization may also include affirmation of
anti-disability bias and devaluation of disabled lives, particularly
regarding Down Syndrome (Kaposy 2013). NIPT carries most of the same
ethical issues as traditional testing and screening methods, and may
exacerbate some.


### 2.2 Birth and Mode of Delivery



As discussed above, birth has been heavily medicalized in contemporary
North America, while at the same time a vocal 'natural
birth' movement has pushed against medicalization. The
disagreement between these two camps often circulates around whether
birth is best thought of as a dangerous and abnormal process best
managed by medical experts in an institutional setting, or as a
'natural' or 'normal' bodily function that
requires formal medical intervention only in unusual cases. Proponents
of 'natural' childbirth point out that current norms of
hospital birth often result in a cascade of interventions (with the
majority of births involving labor inducing drugs and fetal
monitoring, for instance, both of which in turn raise the chance that
the labor will end with a cesarean section). In contrast, proponents
of the medical model of birth argue that while serious complications
during labor are reasonably rare, they can occur quickly and their
effects can be catastrophic, and it is simply good risk reasoning to
have the expertise and resources of high-tech medicine available
during labor.



There is no clear scientific method for assessing the overall benefits
or detriments of normalizing highly technologically mediated,
medicalized birth. Most of the standard interventions during labor
have never been tested in any systematic fashion, but are rather part
of a folk culture of medicine. The rhetorical valuation of either
'natural' or medically managed birth as safer, more
responsible, more maternal, etc. can function to enforce a set of
social norms that are for the most part cut free from scientific
evidence about the medical soundness of various birth decisions and
paths (Kukla 2008, Lyerly 2006).



Lyerly (2006) argues that the problem with modern birthing practices
is not the use of technology or the lack of it *per se*, for
technology itself has no inherent meaning or import. Rather, the
problem lies in a culture of birth that is expert-centered rather than
patient-centered. She draws on phenomenological work by Sandra Bartky
in order to show how "female shame is reinforced by dominant
strains of birthing practice--both hospital-based obstetrics
*and* midwifery" (Ibid, 103). She writes, "Analyses
that focus on models of birthing rather than women's emotional lives
fail to capture the substance of the insult that women have recently
incurred in giving birth. In holding technology culpable, these
analyses are not only inaccurate but also threaten to disenfranchise
women for whom sensitively applied medical practices can enhance both
the safety and agency so important to a good birth" (Ibid, p.
117). When misused, technology can subjugate women to medical
authority, undercut their sense of dignity and control, and alienate
them from the birth process. But it can also be used to enhance
women's agency (such as when pain medication enables a woman to
maintain her dignity and presence of mind at her birth, or when a
scheduled cesarean allows a woman to feel confident that she will have
her partner who is about to deploy overseas present at her birth).
Meanwhile, a relatively 'natural' birth that does not get
caught up in a cascade of medical interventions can be empowering. But
natural childbirth advocates often paint an idealized picture of how
birth is *supposed* to proceed (see also Crossley 2007), and
treat 'success' at natural childbirth as a mark of
maternal character (see also Kukla 2008). Women who for various
reasons--including pre-existing medical conditions or various
complications during labor--do not manage to have a vaginal
delivery free of pain medication and medical intervention may feel
that they have 'failed' to give birth properly.



Ethical debate surrounds when and how women ought to be able to choose
to have a cesarean delivery for non-medical reasons. Because there is
no validated and universal medical code to indicate such deliveries,
we do not know whether elective cesareans (typically referred to as
Cesarean Deliveries on Maternal Request, or CDMRs) significantly
impact the overall cesarean rate or are a rare novelty. Nevertheless,
in light of several notorious cases of celebrity CDMRs, the issue has
sparked intense controversy. Some worry about the prevalence of
cesarean sections indicating the rise of a technological imperative in
standard obstetrical practice (Burrow 2012). On the other hand, women
who choose cesarean deliveries are often stereotyped as "too
posh to push", and seen as privileging their own convenience
over their children's well-being and their maternal responsibilities.
Empirical evidence, however, does not decisively support either
birthing method. A 2006 NIH State of the Science conference assessed
the available scientific evidence concerning the short and long term
risks to women and infants of vaginal and surgical delivery, and
concluded that there was insufficient evidence to issue a
recommendation concerning the relative safety of planned vaginal and
cesarean births. The most comprehensive meta-analyses reveal different
risks in each case that are hard to commensurate and a dearth of
high-quality data. Thus from a narrowly medical evidence-based point
of view there is no justification for recommending one approach to
delivery over the other (Minkoff 2006, Young Mi and D'Alton 2008).



There is a clear sense in which expanding women's voluntary access to
cesarean deliveries increases women's autonomy: it gives women more
*options*. Some of the ethical literature on this issue
(Minkoff and Chervenak 2003, Schwartz 2004) takes it as obvious that
incorporating CDMR into obstetrical practice would enhance patient
autonomy, and then asks whether this advantage is offset by the harm
of unnecessary surgery. But others have argued that autonomy consists
of more than choice, and that in social context, making CDMR routinely
available might actually impede women's autonomy (Bergeron 2007, Kukla
et al. 2009). In a context where doctors have high cognitive and
social authority, and technological intervention and management are
associated with safety, the offer of CDMR will not be a neutral offer
but one that has performative force and a normative valence: it will
not merely report on an option, but may well alter the woman's
preferences and her understanding of what counts as a socially
sanctioned choice. Furthermore, the act of offering CDMR may itself
contribute to the normalization of technologically intensive birth and
medicalization. If, over time, cesarean section is routinely offered
as an option, then it may become the norm, as women will feel that the
more predictable and expertly managed option is the more responsible
choice. And, as cesarean deliveries become increasingly normalized,
obstetricians' skills at vaginal delivery might attenuate, in turn
creating more need for cesarean deliveries and eventually perhaps
making vaginal delivery a choice out of reach for most women (Little
et al. 2008).


### 2.3 The Fetus as Patient



Medical care for pregnant women generally impacts fetuses, whether by
design or as a side effect. Likewise, direct attempts to provide
medical assistance to fetuses inevitably impact the women in whose
bodies they reside. A recurring issue in obstetrical ethics concerns
whether and when the fetus should be conceptualized as a patient in
its own right. Doing so has substantive and complex implications for
doctors, who have distinctive duties to their patients, as well as
other possible legal and ethical consequences.



In several papers (the first published in 1996), Chervenak and
McCullough have argued that late-term, viable fetuses ought to be
conceived of as patients who are owed beneficence and respect for
their (future) autonomy. A pre-viable fetus, in their view, should
become a patient if and only if the pregnant woman autonomously
chooses to grant it such status. Once the fetus is a patient, they
argue, the doctor has a duty to try to protect its well-being and
balance its needs against the needs of the pregnant woman. They point
out that they are not committed to viewing fetuses as persons. The
question of whether the fetus is a patient is distinct from (though in
various ways intertwined with) the well-worn question of whether it is
a person. It is by no means obvious that only people can be patients,
nor that all people become patients just by being impacted by a
medical procedure.



Nevertheless, many feminist bioethicists (i.e., Duden 1993, Lyerly and
Mahowald 2001) have been concerned that conceiving of the fetus as a
separate patient tends to imaginatively bolster the personification of
the fetus, as well as giving it a practical status that ought to be
reserved for persons. Furthermore, understanding the fetus as a
patient in its own right encourages conceiving of the mother and fetus
as beings with entirely separate interests, which may then be in
conflict as easily as aligned. While at times the interests of the
woman and the fetus may diverge, typically these interests are
inextricably related, both because expectant mothers usually care
intensely about fetal well-being, and because protecting the health of
the pregnant woman is typically the best way to protect the health of
the fetus (Mattingly 1992, Lyerly, Little and Faden 2008a).



Maternal-fetal surgery to correct serious fetal anomalies such as
severe Spina Bifida is an experimental field of medicine. Until fairly
recently, such procedures were known as 'fetal
surgery'--a label that made it invisible that in all fetal
surgeries the pregnant woman underwent invasive surgery herself. Early
assessments of 'fetal surgery' considered only the risks
and potential benefits to fetuses, while the medical consequences for
women were understudied and received short shrift in the informed
consent process (Lyerly and Mahowald 2001). At a 2000 conference on
'fetal surgery' at Vanderbilt University, Susan Wolf
suggested the switch to the term 'maternal-fetal surgery',
and this terminology was adopted by the NIH, and by many--though
not all--practitioners and commentators (Ibid). Lyerly and
Mahowald argue that even the switch to conceiving the surgeries as
involving two patients whose well-being must be weighed separately is
insufficient; rather, they think, we should understand maternal and
fetal well-being and interests as tightly intertwined, and the woman
as the sole patient. In both theory and practice, maternal-fetal
surgery raises a number of ethical issues we discuss in this article,
including questions concerning pregnant women's autonomy, consent
under social pressure and in the shadow of powerful social values, and
attitudes towards disability (Antiel 2016).


## 3. Compromises of Pregnant Women's Autonomy



In this section, we take up ethical issues that arise in the medical
management of pregnant women who are decisionally impaired, as well as
the question of whether it is ever ethically justifiable to override a
pregnant woman's autonomous refusal of medical intervention for the
sake of the well-being of her fetus.


### 3.1 Incapacity for Autonomy: Pregnancy in Decisionally Impaired Women



When a patient is decisionally impaired or incapacitated, ethical
dilemmas concerning medical decision-making arise: Should the patient
be included in decision-making in a limited way, to the best of her
abilities, or should paternalistic decision-making take over? Should a
proxy decision-maker make choices on the basis of the patient's best
interest, or by simulating as best she can the autonomous decision
that the patient would have made, had she been in a position to make
one? Such issues are familiar in the context of end of life care and
care for children and the cognitively impaired.



When a pregnant woman is decisionally impaired or incompetent,
however, there are extra layers of ethical complexity to contend with,
because her treatment typically affects not only her, but also her
child to-be. The developing fetus clearly has welfare (or at least
future welfare) but no capacity for autonomous choice, and we have no
formula for combining its interests and moral claims with those of the
mother. For extra complication, the well-being of the child to-be is
typically not independent of the well-being of its mother. Further
ethical issues may arise in cases where, prior to serious decision
impairment (due, for example, to massive brain injury or brain death),
the pregnant woman has autonomously expressed her preference to
continue to gestate and give birth. In such cases, ethicists at both
the clinical and policy-making level may face questions about how to
respect the pregnant woman's autonomy while balancing concerns for the
potential child. They may be required to consider how external factors
such as available caregivers for the potential child may factor into
the possibility and desirability of going forward with the pregnancy.
Thus doctors must balance autonomy-based and beneficence-based
obligations to the pregnant woman, along with beneficence-based
obligations to the fetus (e.g. Coverdale et al. 2004). When a pregnant
woman is decisionally competent, health care practitioners and
ethicists strongly privilege her right to make final treatment
decisions in complicated cases where her interests may conflict with
those of her future child (although see section 3.2 below). Moreover,
the fetus generally has no legal standing that would allow its
interest to override the pregnant woman's interest (Sperling 2006).
But when the pregnant woman has diminished or no autonomy, the
situation is murkier.


#### 3.1.1 Pregnancy in Fully Incapacitated Women



Cases have arisen in which a pregnant woman has zero decisional
capacity and no hope of future agency, for instance when she is in a
long-term persistent vegetative state or has suffered frontal brain
death and is being kept alive artificially (for recent case studies
see, e.g., Said et al. 2013; Esmaeilzadeh et al. 2010). The central
questions raised in such cases include whether it is ethical to keep a
pregnant woman alive for the sole purpose of continuing the pregnancy,
who should make this determination, and which considerations should
factor into that decision. One recent case demonstrates the continuing
power of fetal protections in contexts where anti-abortion laws are
still in place. In 2013, a woman from Texas became braindead at 14
weeks pregnant, and was kept on life-support against her and her
family's wishes, until it was established that her fetus was also
brain dead (Ecker 2014). In many situations, however, the woman's
preference will remain unclear. In 1992, a pregnant German woman
suffered brain death in a car accident that did no apparent damage to
the fetus, and debate ensued over whether to keep her alive
artificially so that the 'Erlanger baby' could continue to
gestate (Anstotz 1993). (The woman miscarried while the debate
was still in progress.) Other recent medical attempts to continue
fetal gestation in the wake of maternal brain death have enjoyed some
success (Esmaeilzadeh et al. 2010).



In some of these cases, questions about how to include the woman's
voice or respect her agency are off the table, and her welfare
interests, if any, are minimal. She has no conscious experience or
future narrative to protect. We may, however, believe that she still
has interests in dignity and in having her former narrative and values
respected. Protecting these interests may preclude certain forms of
treatment of the dead, including artificially continuing pregnancy
(Sperling 2006 77-80). Protecting these interests may also,
conversely, raise issues regarding performing abortions on pregnant
women who have become brain dead (Watt 2016 57-58). Some feel that it
is unacceptable to use a pregnant woman's body as a mere means by
continuing her life solely for its incubation function; others will
argue that if the father-to-be wants to raise his child, it is callous
to deny the child-to-be its chance at life and the father his chance
at parenthood in virtue of abstract concerns about instrumentalism and
respect, given that the woman will experience no extra suffering, and
no thwarting of her autonomous preferences (assuming she left no
advance directive). Anstotz (1993) argues that the fetus has a
right to life sufficiently strong to *mandate* that the woman
be kept alive to enable the fetus to become viable. Fost (1994) argues
that a brain-dead pregnant woman ought not be counted as a person with
interests relevant to the moral calculation, and he urges moving moral
attention away from the 'interests' of the fetus as well.
Instead, he urges that the next of kin ought to have the right to
decide when to remove life support, as they would in normal cases of
non-pregnant patients.



Hilde Lindemann (writing as Hilde Lindemann Nelson, 1994) and Laura
Purdy (1994) argue that keeping a brain dead woman alive for the
singular purpose of continuing her pregnancy is problematic. Lindemann
argues that the woman no longer exists as a person of the sort that
can have agent-relative duties towards her fetus. Furthermore, keeping
her alive as an incubator grossly misrepresents the significance of
pregnancy, reducing it to a passive biological process rather than a
creative, cooperative process involving the woman's agency. Similarly,
Purdy (1994) argues that such postmortem pregnancies contribute to a
problematic view of pregnant women as mere fetal
'containers'. On the other hand, in *these* cases
pregnancy is clearly *not* a creative or active project for the
woman, and, while it may be symbolically problematic not to
acknowledge women's creative, agential role in typical pregnancies, it
seems odd to argue that we should prevent pregnancies that do not fit
this typical profile from existing in order to symbolically protect
the myth that they always do so.



Purdy also points out that sustaining such pregnancies is ethically
problematic because it involves extreme interventions on women's
bodies without their consent. Both Lindemann and Purdy question
whether such extraordinary and expensive medical interventions, aimed
at saving a fetus who is not yet a baby, are a just or reasonable use
of medical resources (especially if the fetus stands a low chance of
survival and normal development). Lindemann worries, furthermore, that
such extraordinary measures help enforce an image of the fetus as
already a person with a claim on resources as large as or even larger
than that of existing persons.


#### 3.1.2 Pregnancy in Decisionally Impaired Women



Pregnant women with limited capacity for autonomous agency and
decision-making (due to cognitive disability, mental illness, drug
use, etc.) still have the right to have their (limited) autonomy
respected and fostered to the largest extent possible; at the same
time, both they and their future children must be protected somehow
from harms that bad choices stemming from decisional impairment could
cause. Such women are often particularly socially vulnerable and
frequent targets of manipulation; they face multiple barriers to
having their reproductive and sexual health needs recognized and met
(e.g. see Greenwood and Wilkinson 2013 on women with intellectual
disabilities). Protecting their agency and well-being as well as the
well-being of their future children can thus be a delicate
negotiation. Furthermore, physicians and family members may not be
neutral parties when it comes to assessing a pregnant woman's level of
decisional competence: if they disagree with her expressed desires
concerning her own care (for example, her opposition to abortion, or
refusal of medication or bed rest) or believe her choices put her
fetus at unacceptable risk, they may be motivated to overestimate her
level of decisional impairment, thereby justifying paternalistically
overriding her expressed wishes.



Douglas Diekema (2003) points out that decisional capacity is not a
threshold capacity, and that it may fluctuate with timing, context,
and type of decision. Hence, in settling on how much paternalism is
appropriate in managing a decisionally impaired patient, doctors have
a responsibility to try to find a time and approach that will promote
and assist rather than foreclose the possibility of the patient's
meaningful autonomous participation in medical decision making.
Facilitating patients' autonomy in reproductive decision-making while
protecting their best interests is perhaps especially challenging in
cases where mood or personality disorders may erratically influence
decision-making capacity (e.g. Zalpuri et al. 2015). Coverdale et al.
(2004) argue that respecting the autonomy of decisionally compromised
patients involves actively working towards removing or diminishing
circumstantial and reversible barriers to participation in
decision-making. This might include education, creative forms of
involvement in decision-making from loved ones, postponing a medical
decision until after psychotropic medication has had time to become
effective, accommodating a patient's special needs for an environment
conducive to making a decision, etc. The presence of a fetus should
not serve as ground for detracting from our duty to protect a pregnant
woman's right to participate in decisions about her own care to
whatever extent she is capable (which is not to say that paternalistic
interventions on behalf of her or her fetus's welfare are never
appropriate for decisionally impaired women).


### 3.2 Overriding Autonomy: Forced Interventions During Pregnancy



When a pregnant woman refuses an intervention that doctors judge
provides a substantial benefit or life-saving intervention for her
fetus, is overriding her refusal ever ethically justified? It is
typically a sacrosanct principle in medical ethics that patients have
an absolute right to refuse medical interventions, including
life-saving interventions, if they make an autonomous, informed,
competent choice to do so. However, in the case of pregnant women,
this principle has been questioned and sometimes violated by force in
the name of protecting the fetus. Examples have included forced
cesarean deliveries, mandatory HIV testing, and life-saving blood
transfusions performed despite religious objections.



The 1987 case of Angela Carder, a 27-year-old woman who had cancer
that had gone into remission but recurred during her pregnancy,
brought these issues to a head. Fully competent, Carder made clear
that she wanted everything possible done to save her life. However,
during the 25th week of gestation, it became clear that
Carder was dying. George Washington University Medical Center, where
she was a patient, tried to insist upon an early cesarean section
delivery in order to save her fetus. She refused the intervention,
which was nearly certain to kill her, with the support of her family,
husband, and doctors, but the hospital obtained a court order and
forced the delivery. Both Carder and her extremely premature baby
survived the operation only very briefly. In 1990, the D.C. Court of
Appeals posthumously vacated the court-ordered cesarean section,
holding that Carder had the right to make health care decisions for
herself and her fetus, and that only in the most exceptional
circumstances should a pregnant woman's right to refuse interventions
be called into question (Thornton and Paltrow, 1991).



Forced interventions have also taken place more recently. In 2009,
Samantha Burton was forced to stay in hospital for prescribed bedrest
when her membranes ruptured at 25 weeks. Burton's competence was not
in doubt, but her interests in leaving the hospital (to return to her
other children and her job) were overridden because her fetus could be
exposed to greater risk if she failed to comply with bedrest orders.
The hospital's obstetrician testified in favour of court-ordered care
in the role of the fetus's attending physician, and the judge ruled
that any interventions required for the fetus should be administered.
A few days later the fetus was delivered by cesarean, already dead.
This case illustrates how pregnant women's rights to refuse
interventions are still treated as violable in cases where refusing
care may harm the fetus (for discussion see Cantor 2012, Charles
2011).



Nevertheless, there is now widespread legal and ethical agreement in
light of the Carder case that pregnant women, as autonomous adults and
full citizens, do not lose their constitutional rights to privacy and
bodily integrity in light of their pregnancy (Pollitt 1990). These
rights continue to hold in cases where exercising them may result in
the death of a fetus or in harm to the child the fetus will become.
Even when the survival of a fetus depends on a pregnant woman
undergoing some intervention, she can no more be compelled to consent
to it than anyone else could be compelled to undergo a medical
intervention to save another person. Some authors have expressed
concern that forcing interventions on pregnant women for the sake of
the fetus contributes to our cultural imagining of the fetus as a
full-fledged person who functions as a patient with rights and medical
needs equivalent to the woman's own (Nelson and Milliken 1988, Roth
2003). Indeed, as Paltrow and Flavin (2013) discuss, even embryos and
fertilized eggs may enjoy the protections of personhood status, albeit
not as a result of formal legislation. Evidence suggests that wide
acceptance of such extensions of personhood will be particularly
detrimental to the procreative autonomy of vulnerable women (ibid). On
the other hand, some forced interventions are designed to improve the
health of the children that fetuses will become. If the fetus will
survive, there will eventually be a full-fledged person with interests
that can be harmed during pregnancy. So forced interventions do not
*necessarily* personify the fetus; they may instead force the
pregnant woman to sacrifice her own well-being or autonomy for the
sake of her future child. But even if the intervention furthers the
interests of a person--either a future person, or a fetal person
if we accept that there are such things--it may be unjust to
permit overruling pregnant women's interests in favour of fetal
interests. In fact, since we do not force medical interventions on
anyone in order to save another fully developed, rights-bearing
person, a double standard that allows forced interventions on pregnant
women seems to enshrine the fetus or future child as *more*
valuable and deserving of protection than born persons (Minkoff and
Paltrow 2004).



Even if forced interventions on competent pregnant women are virtually
never justified, there may be good moral reasons why pregnant women
ought not to refuse various interventions in particular cases. One
might argue that, at least in the case of voluntary pregnancy, the
pregnant woman has taken on a special duty to protect the well-being
of her future child in continuing to be pregnant. Savulescu (2007a)
argues for a 'duty of easy rescue'--regardless of
whether the fetus counts as a person, he claims, a pregnant woman has
a duty to allow acts that do not significantly harm her while
protecting her future child from significant harm (see also Draper
1996). Chervenak and McCullough (1991) argue that sometimes refusal of
treatment can be expected to result in further medical complications,
and hence constitutes an implicit positive demand for alternative
treatment that may be more costly. While we typically take refusals of
treatment to be sacrosanct, our respect for autonomy does not extend
to recognizing an unlimited right to demand particular interventions
at will. If a pregnant woman's refusal of a treatment that would stave
off premature birth, for instance, implicitly involves demand for
expensive care for her premature infant, it is unclear that she has
the moral right to refuse treatment. On the face of it, this argument
is not specific to pregnant women. However, non-pregnant citizens who
shoulder extra risk by refusing treatment could in principle commit to
refraining from using future medical resources, whereas pregnant women
arguably have no moral or legal right to do so on behalf of their
future children. Hence they may have special moral responsibilities
not to refuse interventions in some cases.



On the other hand, the question of the ethical responsibilities of
pregnant women ought to remain separate from the question of what they
can be *compelled* to do by law, medical authority, or brute
force (Draper 1996, Nelson and Milliken 1988). Even if pregnant women
sometimes have a moral *duty* not to refuse interventions, this
does not count against the conclusion that, as full citizens, they
have the same privacy and bodily integrity rights as all other
citizens, even when their exercise of these rights involves morally
problematic behavior.



In the wake of the Carder ruling, cases of forcing a manifestly
competent pregnant woman to undergo an intervention over her
objections have been rare. However, forced interventions are still
sometimes performed on women who are vulnerable due to poverty, mental
illness, immigration status, racism, etc. (Roth 2003, Roberts 1996).
These vulnerable women, whose contact with the health care system is
more likely to be fragmented, are more open to being assessed as
incompetent when their expressed decision differs sharply from the
judgment of medical professionals responsible for their care. Social
marginalization can create the appearance of incompetence, and it can
also genuinely hamper competence when it comes to negotiating
physician-patient interactions.



Cases involving possible forced interventions on pregnant women are
often framed as cases of 'maternal-fetal conflict', in
which doctors or courts must adjudicate between the wishes of the
woman and the well-being or rights of the fetus (Draper 1996, Van
Bogaert 2006). Such a framing positions the fetus as in need of
rescuing from a callous mother. Several authors have argued, however,
that we ought to presume that almost all expectant mothers are
concerned about the well-being of their future children and do not
take an adversarial stance towards them (Minkoff and Paltrow 2004,
Finn 1998). With this in mind, some authors conclude that the very
notion of maternal-fetal conflict ought to be discarded; not only may
it undermine pregnant women's autonomy, it falsely describes the
nature and source of the conflict. Baylis, Rodgers, and Young (2008)
argue that the pertinent conflict is typically between pregnant women
and others who presume authority regarding the appropriate care of the
fetus, and that it is not in any case typically a conflict between the
*mother* and the fetus. In this light, we ought to first try to
understand disagreements between pregnant women and their doctors over
potential interventions in terms of different understandings of what
would best promote maternal and fetal well-being. Such disagreements
are perhaps better cast as maternal-physician conflicts than as
maternal-fetal conflicts. Furthermore, the fact that vulnerable women
are most frequently the ones that find themselves in an adversarial
relationship with their caregivers suggests that we ought to look for
social factors that create miscommunication and conflict rather than
simply casting such women as bad mothers whose fetuses must be
protected from their selfish decisions (Finn 1998).


## 4. Managing and Communicating Reproductive Risk



Many commentators have pointed out that we live in a 'risk
society' (Beck 1992). The language of risk pervades our public
discourse surrounding pregnancy and birth, both currently and
historically (e.g. Hallgrimsdottir and Benner 2014). Where
cost-benefit analyses serve as paradigms of rationality and hallmarks
of efficiency, social problems are framed as exercises in risk
management. While most pregnancies in developed countries yield
healthy mothers and babies, pregnancy unavoidably involves risk for
women and fetuses alike. Women generally care deeply about the
well-being of their future children, and hence are typically concerned
with managing reproductive risk. More broadly, as a social body, we
have a strong collective interest in the health and welfare of our
future community members, and hence reproductive risk is a matter of
public concern.



Pregnancy is portrayed in our culture as fraught with risk on all
sides, while at the same time even minimal risks to fetuses are
treated as intolerable (Kukla 2005, Lyerly et al. 2009). Many have
argued that pregnant women (as opposed to policy makers, fathers,
industrial manufacturers, etc.) are disproportionately burdened with
the responsibility for managing reproductive risk (i.e., Armstrong
2003, Kukla 2005, Rothman 2014). The combined force of these factors
is that pregnant women are often expected to survey and discipline
virtually all aspects of their bodies and lives, from each bite they
eat, to which products they use, where they work and recreate, how
they lie in bed, which emotions they feel, and much more, in
accordance with elaborate, ever-proliferating, ever-changing rules of
risk minimization (Duden 1993, Lupton 1998, Kukla 2005, Lyerly et al.
2009).



In managing and communicating about reproductive risk, we face several
challenges. First and perhaps most obviously, while pregnant women and
fetuses are inextricably physically intertwined, the risks and
potential benefits to each of them of various actions, situations, and
interventions are typically different and can even be in tension.
Managing risk can be especially complicated and ethically charged
given this entwinement of two different sets of risks and potential
benefits. Second, as will be discussed below, there are various
reasons why good-quality evidence about reproductive risk is hard to
come by, and hence we often must make decisions about how to manage
such risk under a great deal of uncertainty. Third, features of our
cultural context can distort our perceptions of reproductive risk
(Drabble et al. 2011). Such distortions become ethically relevant to
the extent that they either lead us to decisions that are not, as they
purport to be, in the best interests of babies or their mothers, or
that place inappropriate burdens and responsibilities on pregnant
women that are not responsive to reality. The following sections
survey some ethical issues that highlight these barriers to
high-quality reasoning about reproductive risk.


### 4.1 Alcohol and drug use during pregnancy



Pregnant women who use alcohol and drugs violate deeply held cultural
visions of appropriate motherhood. We tend to frame any level of
drinking or drug use during pregnancy as indicating serious maternal
irresponsibility. The United States and Canada advocate *total*
abstinence from drinking during pregnancy, or even when becoming
pregnant is a possibility. The United Kingdom and other countries have
recently followed suit. And yet, while we know that alcoholic women,
particularly those who smoke and experience social stress such as
poverty, are at risk for giving birth to babies with Fetal Alcohol
Syndrome, the risk to fetuses from light to moderate maternal drinking
is merely theoretical. Researchers have repeatedly failed to find any
concrete evidence of fetal harm from such drinking (Armstrong 2003,
Lee 2009). Vigilant abstention may be demanded alongside explicit
acknowledgment of such evidence. In 2014, the Center for Disease
Control and Prevention released an extensive study showing no
measurable ill effects on children from light maternal drinking. Two
years later, the Center released an advisory telling *all*
women who could become pregnant to abstain *entirely* from
drinking, whether or not they were or planned to become pregnant (CDC
April 2014, February 2016).



It is tempting to think that even if light drinking or drug use poses
only a small teratogenic risk, women are morally obligated to refrain
from it. For instance, Elizabeth Harman (1999) claims that
*any* smoking during a pregnancy one plans to carry to term is
"morally impermissible", and Gilmore (2008) argues that
women who are or might become pregnant ought to abstain from drinking
any alcohol. But we cannot, of course, ask pregnant women to abstain
completely from all voluntary activities carrying some fetal risk, for
they would be paralyzed into inactivity (which would itself come with
some risk). Indeed, we are not nearly so draconian in our attitudes
towards other, more clearly risky behaviors during pregnancy, such as
driving a car. Elizabeth Armstrong (2003) and Janet Golden (2006) have
argued that widespread social anxiety over Fetal Alcohol Syndrome
constitutes a 'moral panic' over mothers engaging in what
we imagine as self-indulgent or decadent behavior, rather than an
evidence-based response to risk. Focusing on the consumption of
alcohol or drugs as a particularly pernicious form of risk-taking
seems to have more to do with images and ideologies of maternal
self-sacrifice, purity, and decadence than with rational concern for
fetal well-being. The failure of extreme risk-aversion strategies to
reliably decrease harmful behaviours and contribute to positive health
outcomes for pregnant women and their fetuses should lead
practitioners and researchers toward alternative approaches to
understanding, communicating about, and managing risks for pregnant
women (Ballantyne et al. 2016). Alternative approaches call for
clearer understanding of fetal risk among both clinicians and policy
makers, and explicit consideration of the social and political values
that shape current forms of risk management in pregnant women.
(Minkoff and Marshall 2016).



The ethical issues are different when we turn to pregnant women who
seriously abuse alcohol and other drugs known to cause major damage to
fetuses. This is undesirable behavior that we would like to prevent if
possible, and if a woman can stop this behavior, then she ought to.
Many states have tried to prosecute pregnant drug users for separate
crimes beyond illicit drug use, such as child abuse, but such charges
have rarely stood up in court (but see Whitner v. South Carolina,
1997). Not infrequently, pregnant drug users have had their children
removed from their care at birth, or have been coerced into treatment.
As we discuss below, these forms of intervention may have the opposite
of the desired effect, by discouraging pregnant women who use drugs
and alcohol from seeking prenatal care (Roberts and Pies 2011).



George Schedler (1991, 1992) has argued that as a society we ought to
force pregnant women who persistently abuse drugs to have abortions.
He argues that harm is minimized by simply eliminating fetuses at high
risk for damage through maternal drug abuse. The harm of unwanted
abortion, he claims, 'pales in comparison' to the
suffering imposed on other family members, teachers, etc. who must
help care for a damaged child. He also argues that fetuses have a
right not to be subjected to a life damaged by in utero drug exposure,
and that reproductive autonomy does not extend to the right to bear a
child damaged by one's own drug use. It is integral to his argument
that doing drugs is a 'leisure activity', and hence that
women morally forfeit their protection from unwanted abortion and
their right to bear a child through participating in this activity.
One might find implausible the idea that non-existence is preferable
to a life involving even quite severe impairments caused by in utero
drug exposure, and hence Schedler's argument from fetal rights is
questionable. Furthermore, the idea that caring for such an impaired
child obviously involves far more suffering than joy is disturbing.
Moreover, Schedler does not discuss the emotional damage and the
assault on bodily integrity and privacy involved in a forced abortion;
he considers only the immediate discomfort of the surgical procedure
in factoring in the harm done to pregnant women under his
proposal.



Most commentators on the ethics of managing pregnant drug abusers have
rejected a punitive or coercive approach (Capron 1998, Steinbock 1992,
deVille et al. 1998, Terplan, Kennedy-Hendricks, and Chisolm 2015).
The Center for Reproductive Rights published a brief in 2000
summarizing common arguments against punishing pregnant drug abusers.
They point out that punishing the mother does not particularly protect
the well-being of children. It is also unlikely to have a deterrent
effect, since drug use among addicts is rarely a voluntary choice
based on a rational assessment of the risks and potential benefits of
drug use. Indeed, most pregnant addicts are not 'choosing'
their own pleasure over their children's well-being, as they would
generally prefer not to be drug abusers, for their own sake as well as
their child's. In addition to creating barriers to effective prenatal
care, punitive and coercive approaches to drug use during pregnancy
may inappropriately diminish women's agency and misconstrue the
interests of pregnant women who use drugs (Olsen, Banwell, and Madden
2014). Threatening pregnant drug users with punishment does not serve
to protect children from their "unfit" mothers, and may
deter women from getting prenatal care and especially drug treatment,
thereby further harming their children (Terplan, Kennedy-Henricks and
Chisolm 2015). Furthermore, a punitive approach individualizes the
problem of drug use during pregnancy and ignores social determinants
of drug addiction. Some argue that punitive measures against pregnant
women addicted to drugs are inherently unjust when taken in a system
that fails to meet the basic health needs of marginalized women and
children (Flavin and Paltrow 2010). Poor and minority pregnant women
are disproportionately tested for drugs and threatened with
punishment, even though they use drugs at rates no higher than their
white, middle-class counterparts, and hence a punitive approach is
likely to be unjustly applied (see also Hans 1999). Iris Young argues,
"[b]ecause punishing the pregnant addict does next to nothing to
prevent the birth of babies harmed by the chronic drug use of their
mothers, punishment seems only to have the function of marking the
women as deviant, publicly reaffirming their exclusion from the class
of upstanding citizens" (Young 1994, 39).



Iris Young (1994) distinguishes between three approaches to drug abuse
during pregnancy: punishment, treatment, and empowerment. She rejects
the punishment approach as immoral and impractical. Most critics of
the punitive approach advocate a treatment approach (e.g., Steinbock
1992, DeVille et al. 1998). Young, however, has reservations about the
treatment approach as currently practiced; she argues that it still
treats addiction as an individual, medicalized health problem, rather
than as a social problem. An empowerment approach of the sort that
Young favors offers treatment, but in the context of a project of
social empowerment and consciousness-raising designed to foster a
critically reflective "sense of collective influence over the
social conditions of one's life" (Young 1994, 48). She advocates
programs that help women develop a perspective from which overcoming
addiction can be understood not just as an individual health or
will-power problem, but as part of a shared project of personal and
community transformation.


### 4.2 Research and Medical Treatment Involving Pregnant Women



Up until the early 1990s, women were dramatically underrepresented in
clinical research trials. Historically, the two most common reasons
given for women's default exclusion were their purportedly more
complicated and variable hormonal patterns and the possibility that
they might be or become pregnant during the study, which could harm
the fetus (DeBruin 1994, Little 1996, Giacomini and Baylis 2003). The
National Institutes of Health solicited a report from the Institute of
Medicine in 1992 on the effects upon women's health of these routine
exclusions, and the report concluded that serious harms were being
done to women. Women were disproportionately denied the direct
benefits that might come from study participation. More importantly,
their systematic exclusion from clinical trials meant that we did not
know how to design appropriate treatment plans for women, whose
different hormones and reproductive system, longer life span, and
other medically relevant differences meant that treating them as
smallish men for the purposes of dosing drugs and other treatment
decisions was not a medically sound strategy. In 1993, the NIH changed
its policies to make inclusion of women the default in all research,
variation from which requires explicit justification. Constance Holden
(2008) reported that as of 2006, women comprised 68.9% of participants
in clinical trials. However, some argue that women continue to be
significantly outnumbered by male subjects in biomedical research and
clinical trials generally; these commentators suggest that women's
inclusion rates were artificially inflated by a small number of single
sex studies (Kim, Tingen, and Woodruff 2010). Moreover, disclosure of
inclusion practices and rates in clinical trials is unreliable, and
recent reviews fail to confirm reports of significant progress in
diverse inclusion (Woodruff et al. 2015, Geller et al. 2011). 



In any case, pregnant women remain an official 'vulnerable
group' under the federal policies governing human subjects
research, and are exempt from the inclusion mandate. Indeed, virtually
all clinical research excludes pregnant women out of purported concern
for teratogenic effects on fetuses, while even trials for
interventions not classified as potentially teratogenic routinely
exclude pregnant women (Shields and Lyerly 2013). Ongoing exclusion
stymies development of safe and effective medical interventions for
pregnant women, whose metabolism, blood volume, hormones, immune
system, and other bodily systems are affected by pregnancy in ways
that impact their response to medication (Blehar et al. 2013). It also
places fetuses at risk; out of the 468 medications approved in the
United States in 2002, 91% pose an unknown risk to fetuses (Lyerly,
Little, and Faden 2008b). While the lacuna of reliable evidence
regarding safe and effective medical interventions for pregnant women
and their fetuses is widely acknowledged as a problem, it has not, in
general, shaken the consensus that it is unethical to put fetuses at
unknown risk for the purposes of research. Often the thalidomide
crisis of the 1970s is cited as an example of the potential dangers of
exposing fetuses to drugs, and hence as an object lesson in the need
for precautionary principle to govern our practices of including
pregnant women in research. But if the welfare of fetuses is our
primary concern, we ought to take the opposite lesson from the
thalidomide disaster: it is precisely because thalidomide was
*not* systematically tested before being prescribed that so
many babies were affected (Ibid.).



In light of our lack of knowledge of the teratogenic effects of most
drugs, advice for pregnant women is generally conservative; women are
advised to avoid medical interventions and medications during
pregnancy if at all possible. For example, women with mental illnesses
such as bipolar disorder and depression are often counseled to avoid
medication during pregnancy, both because psychotropic drugs tend to
diffuse readily across the placenta, and because typically, the mental
state of the mother does not *directly* impact the health of
the fetus (in contrast with, for instance, diabetes or
life-threatening cancer). However, mental illness in pregnant women
matters to fetal development: untreated depression, for example, is
associated with premature birth, low birthweight, and other
complications (Gold and Marcus 2008). Moreover, some researchers argue
that evidence for negative health outcomes for children born from
women taking anti-depressants is scant and unreliable, and provides
little guidance for treatment (Byatt, Deligiannidis, and Freeman 2013,
Pearlstein 2015). Without improved evidence, it is difficult to give
any rules of thumb for the ethics of treating mental illness during
pregnancy.



More generally, the conservative approach to doing research with and
treating women during pregnancy emphasizes the risks to fetuses from
intervening, but not the risks from not intervening (Lyerly, Little,
and Faden 2008b). When we exclude pregnant women from research or
discourage treatment because of a lack of knowledge about the effects
of a medication, we are not typically erring on the side of fetal
*safety*; rather, we generally have no idea whether it is
riskier for the fetus to be exposed to a medication or to the effects
of untreated maternal morbidity. As Lyerly, Little and Faden point
out, "If research is important to tell us when medications are
unsafe, it is also important to reassure us when drugs *are*
safe ... In the absence of information about the safety and
efficacy of medications, pregnant women and their providers are left
with two unsavory options--take a drug, with unknown safety and
efficacy; or fail to treat the conditions, thus leaving the woman and
fetus vulnerable to the consequences of the underlying medical
problems" (Lyerly, Little and Faden 2008b, 12, 19). Pregnant
women who have medical needs during pregnancy are typically told to
weigh the risks and benefits when deciding whether to proceed with a
treatment whose impact on fetuses is unknown. But this is an
impossible demand; no one can weigh unknown risks and benefits.
Excluding pregnant women from research sustains the impossibility of
this calculation, and erring on the side of nontreatment may or may
not best protect fetal well-being.



To our knowledge, no bioethicist has defended the current policy of
near-universal exclusion of pregnant women from research. It is
unclear, however, how best to craft appropriate standards for
inclusion. Not only is the random exposure of fetuses to unknown
teratogenic risks ethically problematic, but few pregnant women are
likely to enroll in such trials. Some bioethicists propose ethical
guidelines for inclusion of pregnant women in clinical trials that
attend to both the woman and her fetus as patients (Chevernak and
McCullough 2011). As others point out in response, however, the fetus
as patient approach will likely entail continuing strict limitations
on clinical trial participation, including in cases where the
intervention in question is potentially life-saving for the pregnant
woman but risky to the fetus. The approach does not resolve the
problem of pregnant women's exclusion from medical research
participation and associated health impacts (Baylis and Kaposy 2011,
Liaschenko, Debruin, and Marshall 2011, Perry 2011). We are in need of
new practices and policies that are sensitive to the difficulties and
dangers of research on pregnant women, but are undistorted by
assumptions that it is always more responsible and safer to protect
fetuses from unknown interventions. Proposals for identifying and
implementing ethically and medically sound guidelines for including
pregnant women in clinical trials are currently under development
(e.g. Brandon et al. 2014, White 2015).



In rare cases, such as some advanced cancers, treatment decisions for
a pregnant woman necessitate a choice between saving her life and that
of the fetus, or other dramatic trade-offs. In such cases, there is
general consensus (especially in the wake of the Angela Carder case
discussed above) that the primary consideration should be saving the
life of the mother (i.e. see Puls, Terry, and Hunter 1997). Charles
Weijer (1998) points out, however, that in some cases a pregnant
woman's decision to refuse treatment and sacrifice herself for her
child should be counted as an autonomous decision worth respecting,
and that we should not assume that only self-interested decisions can
be autonomous.