Calling fetuses defective if they are prenatally diagnosed with genetic conditions foreshadows a dangerous path toward eugenics.
This year has seen a rash of medical studies
reporting on developments in cell-free fetal DNA (cffDNA) prenatal
testing. Not too long ago, one commentator cautioned that as prenatal
genetic testing becomes more pervasive, our society risks developing a “eugenics common sense.” The reporting on the new cffDNA testing suggests that some have already developed this sensibility.
In October 2011, Sequenom, a publicly traded company, introduced
its version of cffDNA prenatal testing. As the name suggests, floating
in each expectant mother’s blood stream are bits of DNA from the child
she is carrying. The new testing procedure tests this fetal DNA and can
detect with the greatest reported sensitivity whether the fetus has Down
syndrome. Because of false positives, cffDNA testing remains a
screening-type test, providing a reassessment of the likelihood that the
child has Down syndrome; it is not a diagnostic test, yet.
Sequenom’s competitors Verinata and Ariosa entered the market this
year with their versions of cffDNA testing. Like Sequenom, they heralded
their testing with medical journal articles and press releases.
Reporting on these new tests has employed language with a notable
eugenics lexicon.
In his recent column for Slate—headlined “Fetal Flaw”—Will
Saletan praised the advances in prenatal testing for informing mothers
if they are pregnant with a “defective fetus.” Saletan used the new
tests as a wedge in abortion politics. Citing various polls, he argued
that it will be difficult for pro-lifers to persuade a majority to be
opposed to this new testing, even though Saletan rightly expects that
the numbers of abortions will increase. Because it would be difficult to
enforce any prohibition against aborting for specific reasons—such as
the recent attempt
by the House of Representatives to make sex-selective abortion
illegal—Saletan almost gloats that the new tests will allow for even
more eugenic abortions, i.e., abortions due to the fetus’s genetic make-up.
A month before Saletan’s article, Newsweek reported on the “epidemic of special needs kids.”
As the charged word “epidemic” suggested, the article discussed the
growing burden of caring for more children with autism and Down syndrome
because of the costs of medical care. Almost lamentably, the article
notes that these burdens have been somewhat compounded because, due to
societal advances in medical care and inclusion in mainstream society,
individuals with intellectual and developmental disabilities are now
enjoying longer—and therefore costlier—lives.
Burden. Defective. Epidemic. These were terms commonly used in the
eugenics era at the turn of the last century to justify compulsory
sterilizations and involuntary euthanasia. But raise concerns at the
turn of this century over prenatal genetic testing, and, as Mr. Saletan
shows, the critics will be dismissed for simply being Luddites, against
the advances of technology in the information age. What Mr. Saletan and
other proponents of prenatal genetic testing ignore is that while
technology may be value-neutral, how it is administered is not.
The administration of prenatal genetic testing does not happen in a
hermetically sealed vacuum. Counseling about prenatal testing is not cut
off from the biases and prejudices of society. Rather, it is promoted
and administered by an academic, scientific, and professional elite
where such bias and prejudice are concentrated.
The medical profession is still largely trained to view humans in a
bio-medical perspective: what’s wrong with the patient? And that
wrongness is defined by what the professional performing the diagnosis
views as normal or desirable. Therefore, it should not be surprising
that a profession that exalts those with the highest academic
performance would view those with more apparent cognitive challenges as
having something wrong with them—as being “defective.”
Studies have found that medical professionals admit that they are poorly trained
in both prenatal testing and the conditions currently tested for, the
main one being Down syndrome. Moreover, the medical school deans in
charge of training them admit that their future medical professionals are not competent
to treat individuals with intellectual disabilities. Is it any wonder,
given this training, or lack thereof, and the culture in which they
strive to succeed, that medical professionals overwhelmingly admit that they would abort following a prenatal diagnosis for Down syndrome? Simultaneously, medical professionals have a financial incentive for their patients to accept testing, which provides more revenue for their practice.
It is into these hands that Saletan, and the rest of society, is
entrusting the ethical administration of prenatal testing, justified as
empowering a woman’s right to choose. This systemic bent toward
providing prenatal testing despite the ethical concerns associated with
it was demonstrated the week after Saletan’s article was published.
The International Society for Prenatal Diagnosis (ISPD) held its
conference where the same testing Saletan writes about is all the rage.
Speakers used terminology similar to Saletan’s with a similar
perspective: who could be against testing that can identify what they
consider a genetic “disease”?
In the very first session of the conference, Dr. Yuval Yaron, Director of the Prenatal Diagnosis Unit at Tel Aviv Sourasky Medical Center, argued
that testing for Fragile X syndrome should be universally offered, even
though he admitted it failed to meet one element of his cited criteria
for such a recommendation. According to Yaron, and the World Health Organization,
for a test to be acceptable as a screening test, it must be accurate,
cost-effective, and identify conditions for which there is a treatment.
Currently there is no treatment for prenatally genetically diagnosed
conditions such as Down and Fragile X syndromes. Yaron even admitted
this. But, echoing the arguments of last century’s proponents of
eugenics, Yaron argued that the test should nevertheless be offered to
every woman, because an economic analysis could demonstrate that the
costs of women accepting the testing could be offset by the amount of
public health-care money saved if those women aborted their “defective”
fetuses with Fragile X.
Days after the ISPD conference, the TODAY Show on NBC featured a
union of the medical profession and the media on developing a eugenics
common sense.
Currently, cffDNA testing can only detect a few genetic conditions. Other researchers, however, have reported identifying 3,500 genetic conditions based solely on a sample of the mother’s blood and the father’s saliva. The TODAY Show carried a segment
with their senior medical editor Dr. Nancy Snyderman commenting on
these research results. The host asked, “Do you think it raises ethical
issues? I mean at what point, if you have information that your child is
going to have a genetic problem, and then you’re posed with the
question of whether to go forward with the pregnancy?” Snyderman
answered, “Well, I’m pro-science, so I believe that this is a great way
to prevent diseases.”
In the wake of such statements, New York Times columnist Ross Douthat wondered
whether our society was on the verge of another era of eugenics. But
Douthat states that governmental eugenic policies are “all but
unimaginable in today’s political climate.” Put aside that the Obama
administration has mandated
no-cost prenatal genetic testing as a means of “preventive” medicine.
The more fundamental question is: why is the existence of a governmental
policy the critical element for raising moral concerns about the
eugenic implications of prenatal genetic testing? Is the lesson of the
previous eugenics atrocities that viewing others as burdensome
defectives ripe for elimination is wrong only when a
governmental policy says so? Or, is not the lesson that it is wrong to
view another human life as defective, as a burden, regardless of whether
there is a governmental policy or not?
But that is the other distinction. As the argument goes: The impact
of prenatal testing for Down syndrome is not morally problematic not
only because abortion is not governmentally mandated following a
prenatal diagnosis, but testing deals with fetuses, not ex utero
human beings. Because there is no consensus on the moral status of the
fetus, then it is incorrect to talk of eugenics when it comes to
aborting a fetus with a genetic condition.
What else, though, do the commentators and medical elite mean when
they refer to defective fetuses? Of course, they mean the child that
will be born if the pregnancy is allowed to continue. That child, who to
them poses a burden or has a disease, is to be prevented through
abortion. But defective is in the eye of the beholder.
Again, this, too, is the lesson from last century’s eugenics. While
it began with individuals termed “feeble-minded,” it also included those
with physical disabilities, homosexuals, and, ultimately, Jews.
The progress in civilized society that followed the Holocaust was due
in part to the lesson being learned that once a group of people can be
labeled as defective, then, so, too, can any other group, depending on
who has the power to do the labeling. As a result, civilized nations
became more inclusive of all individuals, regardless of race,
disability, ethnicity, or sexual orientation.
Unfortunately, it seems we have an ingrained bent toward finding a
reason to discriminate against others. As a result, continual education
is required to tame that bent and provide for a civilized society. The
recent comments on the advances in prenatal genetic testing demonstrate
the continued need for these educational efforts. Earlier this summer, Massachusetts
joined states such as Missouri and Virginia in requiring that accurate,
up-to-date information be provided to expectant mothers receiving a
prenatal diagnosis of Down syndrome and other diagnosable conditions. If
there is a role for governmental policy concerning prenatal genetic
testing, it is to require this balance in information. Otherwise, we
will revert to developing a eugenics common sense and being doomed to
repeat the atrocities of history.
