To characterize the atmosphere surrounding abortion in the United States as a contentious
one would be an understatement: few other social issues have inspired such vitriolic
rhetoric, divisive legislation, and overt acts of violence as those wrought by pro-life
extremists. Though the fight over how and when a woman should be able to terminate
a pregnancy has been ongoing, the crusade against abortion has recently taken an innovative
twist as pro-life advocates have begun to craft legislation that uses disability rights
as a smokescreen to further their cause. In 2016, two states attempted to roll out
sweeping pieces of legislation that criminalize abortion when it is sought because
of a ‘genetic abnormality’ in the fetus: Louisiana's House Bill 1019 (HB 1019)
1
and Indiana's House Enforced Act 1337 (HEA 1337) were passed in April and June of
2016, respectively; however, both laws were enjoined by a Federal judge shortly after
passage and are temporarily blocked from taking effect.
2
Because laws such as these purport to, in theory, protect the lives of individuals
with disabilities, traditionally conservative pro-life advocates now paradoxically
find themselves on the same side of the abortion debate as traditionally liberal disability
rights advocates. In practice, however, laws that criminalize abortion on the basis
of genetic abnormality simply carry the veneer of enhancing the position of disabled
individuals in society as a means to a very specific end—to discourage abortion. This
paper will discuss the various ways in which states have politicized disability rights
as a means of legislating key aspects of the patient–doctor encounter.
THE CONTROVERSIAL NATURE OF PRENATAL TESTING
Advances in the field of medical genetics have only relatively recently made it possible
to detect abnormalities in a fetus through prenatal genetic diagnosis: it has been
possible to detect chromosomal abnormalities like Down syndrome through the sampling
of amniotic fluid, or amniocentesis, only since the 1960s.
3
Prior to that time, the only possible way to identify a hereditary birth defect was
after an affected individual had already been born and the only available solution
for preventing subsequent recurrences of the defect was simply to stop having children.
4
After accurate human karyotyping (ie the technology that allows us to visualize an
individual's chromosomes) became possible in the 1950s, it was discovered that some
birth defects caused by an abnormal number of chromosomes could be identified relatively
easily; therefore, screenings for chromosomal abnormalities became more widespread
as technology advanced, with screenings for Down syndrome in particular becoming systematic
in the 1990s.
5
Currently, it is possible to both screen for and diagnose many heterogeneous conditions
via different techniques, one of which (cell-free fetal DNA testing) can yield results
even as early as after 9 weeks of gestation.
6
Within the world of prenatal genetic testing, there already exists an inherent tension
between facilitating reproductive choice and preventing the birth of children with
disabilities. Advocates of prenatal diagnosis assert that it gives a woman the right
to freely choose whether or not she wishes to give birth to a disabled child. Conversely,
critics of prenatal diagnosis argue that the process itself is eugenic in nature,
and that the decision to terminate a pregnancy of a child deemed ‘defective’ is ‘morally
problematic, and…driven by misinformation’.
7
Throughout the prenatal diagnosis process, a woman is presumably under the auspices
of a genetic counselor: a ‘neutral’ medical professional who is able to provide the
information necessary in order for the woman to reach the most appropriate decision.
Bioethicist Arthur Caplan describes the role of genetic counselors:
The ethical norm governing genetic counselors involved in testing and screening for
genetic conditions related to reproduction has been strict neutrality since the early
1970s: doctors and counselors were obligated to simply provide people with information
to help them make decisions without actually guiding them toward a particular decision.
What patients do with test results in terms of deciding whether to have a child or
to continue a pregnancy after a diagnosis of Down syndrome, counselors were taught,
is strictly up to them.
8
The tenets of nondirectiveness and noncoerciveness that are central to the genetic
counseling profession were largely adopted due to previous eugenic practices, and
were intended to prevent ‘coercion of reproductive decisions for an individual or
couple whose fetus is found to be affected with a certain condition’.
9
In practice, however, it has been argued that the offer of prenatal genetic testing
itself is inherently biased. Though screening and diagnostic techniques have greatly
advanced, treatments for most diagnosed conditions have not, placing before the mother
a potentially disturbing decision: The only viable ‘treatment’ option for a fetus
found to have a genetic abnormality has remained termination of the pregnancy.
While prenatal screening was previously only offered to women thought to be at risk
of having a child with a disability, in 2007 the American College of Obstetricians
and Gynecologists (ACOG) amended its guidelines on chromosomal abnormalities to recommend
that all pregnant women in the first trimester of pregnancy be screened for certain
biochemical markers associated with risk of their fetus having Down syndrome as well
as other chromosomal abnormalities and defects.
10
This recommendation effectively ‘places in the path of every pregnant woman the possibility
of facing a decision about the continuation of her pregnancy based on the presence
of a birth anomaly’.
11
As the profession of genetic counseling has evolved, a paradigm shift has occurred
from strict nondirectiveness of the counselor to acknowledgement of the need for more
flexible approaches to counseling based on ‘client and family needs and values, clinical
circumstances, and desired counseling outcomes’ more reflective of patient choice.
12
Perhaps in order to address this shift within the field, the ACOG released this statement
following publication of their 2007 guidelines on chromosomal abnormalities:
We are not recommending that all pregnant women be screened, but rather we are recommending
that all pregnant women be offered screening. Physicians are ethically obligated to
fully inform our patients of their health care options, including prenatal testing.
Therefore, it is entirely up to the patient to decide whether or not she wishes to
be screened for fetal chromosomal abnormalities without judgment from the physician.
13
Because patient–doctor interactions are rarely fully autonomous, and the option of
prenatal testing is, in many cases, presented in the context of a lack of viable treatment
options, some fear that the offer to test may unintentionally bias the patient toward
abortion (even if the medical professionals embrace an inherent commitment to patient
autonomy). However, even though the process of undergoing prenatal genetic testing
may not be as nondirective in practice as in theory, restricting reproductive rights
through not offering testing damages the practice of medicine and the doctor–patient
relationship as it does not allow a mother to consider the possibility of making a
fully informed autonomous decision regarding her pregnancy. Legislation restricting
and mandating surveillance of encounters between a patient and a medical professional
is contraindicative to the tenets of autonomy, beneficence, nonmaleficence, and justice
that are foundational in Western medical ethics.
14
Additionally, restricting abortion in the name of affirming the dignity of and protecting
individuals with disabilities provides pro-life activists an easy way to galvanize
support for further restrictions on abortion without actually providing tangible support
for individuals with disabilities to succeed in a world that is not amenable, and
oftentimes hostile, to their disabilities after their birth.
STATE LAWS RESTRICTING ABORTION ON THE BASIS OF GENETIC ABNORMALITY
In March 2016, Indiana became the second state to prohibit abortion for reasons that
the fetus may have a genetic abnormality with the passage of HEA 1337
15
. In 2013, North Dakota was the first state to prohibit abortion based on potential
fetal abnormality, even if the fetus were to have a condition ‘making it incompatible
with life’.
16
Similarly, HEA 1337 goes further than the North Dakota law to prohibit abortions of
fetuses performed solely for the reason that ‘the fetus has been diagnosed with a
disability or has the potential diagnosis of a disability, or solely because of the
fetus's race, color, national origin, ancestry, or sex’
17
. Indiana's abortion laws were already some of the most restrictive in the country:
abortion is illegal after 20 weeks of gestation (or 22 weeks after a woman's last
menstrual period) and any prospective abortion requires mandatory state-directed counseling,
as well as an ultrasound. Indiana Governor Mike Pence's office has described this
bill as a ‘comprehensive pro-life measure that affirms the value of all human life’.
Legislation such as Indiana's HEA 1337 undermines the doctor–patient relationship
and puts an undue burden on health care professionals to police a woman's reproductive
choices. The passage of legislation that restricts the interaction between a pregnant
patient and her medical professional upends the state-sanctioned confidentiality within
that interaction. Furthermore, it inappropriately injects a pro-life moral imperative
into a clinical interaction, and directly challenges the tenets of autonomy and reciprocal
patient engagement (or shared decision making) in prenatal genetic testing. Because
a woman seeking an abortion within the legal timeframe of 20 weeks post-gestation
is not required to tell a doctor why exactly she is seeking an abortion, this law
is effectively unenforceable; however, instead of fostering a trusting relationship
between doctor and patient, it creates an adversarial, or at least fettered, one.
Fearing punishment under this law, a woman receiving a prenatal diagnosis of potential
disability may actually be discouraged from seeking the resources necessary to make
an informed choice from her physician: if a medical professional can ‘turn her in’
for wanting an abortion, she therefore has no incentive to discuss her decision. Instead
of incentivizing the kind of honest patient–doctor discourse necessary to discuss
the realities of caring for a child with a disability, these laws have the potential
to hurt both mother and child by injecting shame and fear of punishment into an already
emotionally charged situation.
OTHER LAWS LEGISLATING PATIENT − DOCTOR COMMUNICATION
A less overtly restrictive type of law has recently been passed in several states
that affects patient–doctor communication in the realm of prenatal diagnosis of Down
syndrome in particular. The Pennsylvania Down Syndrome Prenatal Education Act (also
known as Chloe's Law) was passed in 2014 at the behest of the father of an 11-year-old
girl with Down syndrome who thought that abortions performed on fetuses at risk of
having Down syndrome might be due to a lack of information on the ‘positive’ aspects
of raising a child with the condition and sought to make sure information given to
pregnant women regarding Down syndrome was fair and balanced through the passage of
legislation.
Passed by an overwhelming majority, Chloe's Law mandates that the ‘Pennsylvania Department
of Health…make available up-to-date, evidence-based information about Down syndrome
that has been reviewed by medical experts and national Down syndrome organizations’.
18
This information would include information regarding ‘physical, developmental, educational
and psychosocial outcomes; life expectancy; clinical course; intellectual and functional
development; treatment options; and contact information for First Call programs, support
services, hotlines specific to Down syndrome, relevant resource centers, clearinghouses
and national and local Down syndrome organizations’.
19
Although Chloe's Law and the eight other pieces of legislation that are modeled after
it in other states strive for neutrality on their face, the state of Pennsylvania
essentially seeks to upend the ethical norms of autonomy and patient centeredness
in genetic counseling and prenatal diagnosis by mandating that certain information
be provided regarding Down syndrome during the doctor–patient interaction. The Institute
of Medicine defines patient-centered care as ‘care that is respectful and responsive
to individual patient preferences, needs and values, and ensuring that patient values
guide all clinical decisions’.
20
Although the information is published by the state, it is collected from organizations
with a certain message in mind and there is a natural concern that laws mandating
certain patient–physician communications bias what information patients receive.
INTERSECTION OF PRO-LIFE AND DISABILITY ADVOCACY
Disability rights advocates argue that it is not the limitations caused by disability
itself but societal discrimination against individuals with disabilities that constitutes
the major problem
21
; therefore, it is imperative that individuals with disabilities and their caregivers
have access to the support necessary to overcome the challenges of a living in a society
that may not meet their needs. Though pro-life advocates’ hardline stance against
abortion is at first glance couched in this social model of disability, such advocates
often actively oppose funding for social service programs for the disabled. As Suratha
Jesudesan and Julia Epstein note:
Anti-choice advocates tend to idealize disability while opposing the entitlement programs
and government funding of social services, such as state developmental disability
programs, funding for the Individuals with Disabilities Education Act, and the access
mandates of the Americans with Disabilities Act that would make raising a child with
a disability more possible.
22
While the laws restricting abortion on these so-called moral grounds purport to affirm
the status of individuals with disabilities, they unfortunately do very little to
support disabled individuals or their caregivers following birth. Legislation that
criminalizes abortion on the basis of a genetic abnormality presumably seeks to increase
the number of individuals that are born with disabilities (by outlawing their ability
to be aborted); however, somewhat paradoxically, neither of these laws include any
provisions that will provide the disabled individuals they wish to prevent from being
aborted or their families with the tools necessary to ensure their well-being or the
social support necessary for them to flourish in their respective communities.
STRANGE, BUT PERHAPS INEVITABLE, BEDFELLOWS
The issues of abortion and disability rights have become deeply intertwined in recent
years, making them strange, but perhaps inevitable, bedfellows. In order to limit
a woman's right to autonomy in her reproductive health choices, pro-life activists
have politicized the experiences of disabled individuals to build momentum for abortion
restrictions by seeking to proclaim ‘the value of all life, including individuals
with and without disabilities’.
23
Paradoxically, the traditionally conservative pro-life movement's goals align with
traditionally progressive disability rights groups’ stance that selective abortion
based on disability is morally problematic. Laws that criminalize abortion on the
basis of the possibility that a fetus could have a disability or genetic abnormality
are currently only active in North Dakota (excluding the enjoined Indiana and Louisiana
laws); however, Ohio's House of Representative introduced similar legislation in 2015
that is still pending, and more states may attempt to roll out similar pieces of legislation.
24
Moreover, legislation that mandates that certain information be provided by medical
professionals to patients who may be carrying fetuses with a risk of Down syndrome
is eerily similar to certain state laws that require doctors to tell patients certain
information (for example, that abortions are reversible, or that fetuses can feel
pain) and is becoming increasingly more prevalent as well. According to the Guttmacher
Institute, as of August 1, 2016, three states require that a woman seeking an abortion
undergo counseling on perinatal hospice services ‘if [the desire to abort] is due
to a lethal fetal condition’: Kansas requires counseling on perinatal hospice services
before any abortion may be performed.
25
Though laws criminalizing abortion of disabled fetuses and requiring certain materials
be provided to women seeking abortions purport to be in service of individuals with
disabilities and their families, their primary goal is to legislate extremely private
individual and family decisions rather than to focus public policy where it may be
more productive, ie by mandating access to services, education, and support for families
and individuals caring for individuals with disabilities and embracing disability
as a part of the human experience.
26
A distinct variety of lived experiences, values, and preferences will mean that people
in similar situations will inevitably make different choices. In the realm of private
reproductive choices, the government is rarely, if ever, a better decision-making
entity than a provider or patient; however, as anthropologist Rayna Rapp notes, it
is important to acknowledge that our private choices are still important for society
as a whole: ‘[P]rivate choices always have public consequences. A woman's individual
decision, when resulting from social pressure, or colluding with a ‘trend’, has repercussions
for all others in society’.
27
Whatever the societal repercussions of any one choice may be, restricting the ability
to make the choice does little to benefit individuals, disabled and able-bodied alike.