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.
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.
Mark W. Leach is an attorney from Louisville, Kentucky, and a Master of Arts in Bioethics 2012 candidate. Mr. Leach gave a poster presentation on the ethical obligation for testing laboratories to provide educational materials with a Down syndrome diagnosis at the ISPD conference.