The medical professions
And particularly bioethics
Must contend with a shared history
with some of the most chilling crimes committed against humanity.
Involuntary sterilization
Racially-motivated experimentation
Eugenics.
This history, however,
is not distant
and perhaps may not even be called "history"
for people with disabilities.
Injustices continue to be perpetrated against this community
here in the United States and around the world, even today.
One such injustice concerns particularly people with Down syndrome.
Down syndrome, or Trisomy 21,
is a genetic disorder caused by an extra copy of the 21st chromosome.
It is the most common chromosomal disorder,
affecting an estimated 1 in 700 babies born every year.
It is also the most common genetic cause of intellectual disability,
and is characterized by a classic physical appearance
and increased risk for other physical conditions,
including congenital heart disease,
hearing loss,
and eye disease, among others.
The advent of prenatal testing, however,
has led to a silent eradication of children with Down syndrome,
and a tacit understanding in society
that children with Down syndrome ought not be born.
Obtaining accurate statistics on the abortion of children with Down syndrome is challenging
due to regional variation and small sample sizes in the studies conducted to date.
Estimates range from 61 to 93 percent,
with an average 74% of women who receive a prenatal diagnosis of Down syndrome choosing abortion.
This disturbing statistic reflects the prejudices of the medical community,
incomplete or inaccurate information offered to expectant mothers,
intersections of oppression,
and an inherent conflict between contemporary models of disability
and classic models of bioethics and abortion rights.
Prenatal screening and diagnosis were developed to assess abnormalities in the development of the fetus,
including neural tube defects and chromosomal anomalies.
Less invasive tests of the mother's blood may be used as an initial screening tool,
but do not provide definitive diagnosis of Down syndrome.
More accurate, but also more invasive and of higher risk, are the prenatal diagnostic tests:
amniocentesis and chorionic villus sampling.
These tests were initially aimed at mothers over the age of 35
who on an individual basis carry a higher risk of bearing a child with Down syndrome than younger mothers.
However, because there is an absolute higher number of younger mothers,
they still account for the majority of Down syndrome births.
This is reflected in the recent expansion in many countries
of offering prenatal testing to all mothers instead of the classically "high risk" mothers.
Prenatal testing carries with it an unspoken command:
if this test is abnormal, abort.
This is reflected in the language used by medical professionals when sharing positive test results:
"I'm sorry, I have bad news."
The non-neutral application of prenatal testing
reflects a medical model of disability
that places the physician as expert, and the child with Down syndrome as inherently, irrevocably flawed.
One mother shared her experience of the moment her obstetrician told her that her daughter would have Down syndrome.
"Instead of support and encouragement,
you suggested we abort our child.
I told you her name
and you asked us again if we understood how low our quality of life would be with a child with Down syndrome."
These prejudices in the medical community
--that it is the duty of medicine to sacrifice disability at the altar of quality of life--
color the way that mothers view a prenatal diagnosis of Down syndrome.
Many people lack meaningful interaction with people with Down syndrome,
and thus rely entirely on the opinions of the medical community
and on popular culture to gain an understanding of this disability.
Parents expect to have a more negative experience
and greater challenges raising a child with Down syndrome than a child without a disability
or even a child with a physical disability.
This reflects a socially-constructed hierarchy of disability
in which people with physical disabilities are valued more by society
than people with cognitive disabilities.
When compared to muscular dystrophy, for example,
parents perceived the same inherent costliness
but fewer rewards in raising a child with Down syndrome.
These perceptions, born from a lack of information or, less charitably, biased information,
contribute to the eugenic attitude that has enabled alarming rates of selective abortion of children with Down syndrome.
It is imperative, then,
that mothers be offered complete and non-directive information
not only about the strengths and limitations of both prenatal screening and prenatal diagnostic testing,
but also about Down syndrome itself.
Only then can we say that mothers have made the decision with truly informed consent.
But it is not only a lack of education on the part of the medical community or expectant parents.
There are larger intersections of oppression
that contribute specifically to the selective abortion of children with Down syndrome.
Prenatal testing, despite the expansion of its medical indications,
is still largely a commodity of higher socioeconomic classes.
This has led to disparities in live births with Down syndrome between
women of high and low socioeconomic status.
The parallels with twentieth century ideals of genetic purity in the upper, "fit" classes
are chilling.
Older mothers,
already viewed as deviating from the ideal of motherhood simply due to their age,
may also feel pressured to choose abortion of children with Down syndrome.
After all,
these prenatal tests were designed with them in mind.
The ability to identify and selective abort children with Down syndrome has led, perhaps ironically,
to a new moral model of disability.
It has become immoral in a world of genetic testing
to bring a child with a known disability to term.
The "responsible" mother undergoes prenatal testing
and ensures that she only births a "normal"
--that is, non-disabled--
child.
In a world that has more resources than ever to help people with disabilities,
more and more parents are feeling isolated and judged
for their decision not to "avoid the problem" of a child with Down syndrome.
We see, then, an inherent conflict arising between classic values of bioethics
and contemporary models of disability.
A utilitarian approach to public health
suggests value in eradicating the disease before it even begins.
Personal autonomy supports a mother's right to choose.
Bioethicists may also argue fallaciously about quality of life
--a feature not diminished in Down syndrome.
But together,
these models all create the discriminatory, eugenic attitude
that leaves no place for people with Down syndrome in our world.
Therefore, we must change our world.
We must fundamentally change how we look at people with disabilities,
and specifically people with Down syndrome.
Instead of those bioethical values
tailored to an abled population,
and tired, paternalistic models of disability,
we must instead consider a social model of disability.
We must recognize the flaws in our society that alienate,
that make resources inaccessible to parents,
and that foster discriminatory attitudes toward people with Down syndrome,
instead of seeing people with Down syndrome as inherently flawed.
We can see success where this has been done.
In Pittsburgh,
a city with Down syndrome clinics specifically geared toward integrating these people into their communities,
there is a lower rate of abortion of children with Down syndrome
than in places where such resources are not available.
In a society that welcomes and helps people with Down syndrome,
we can stop this eugenic practice of selective abortion.
