Does Prenatal Testing Equal Eugenics?

My colleague and friend Amy Julia Becker had an interesting conversation on her blog earlier this week, in which she and her readers discussed “whether or not those of us with children with Down syndrome should allow abortion into the conversation surrounding prenatal diagnosis.” Most of the people Amy Julia cited in her post, as well as commenters (including me) argued that if abortion is one of the legal choices that parents can make, it must be part of the conversation. The consensus was that informed, compassionate counsel is most helpful to expectant parents with a prenatal diagnosis of Down syndrome, and that such counsel must include open discussion of all available choices, as well as comprehensive information about life with this disorder, including encouraging parents-to-be to talk with families living such a life.

The lone dissenting voice in her post (as of this writing) comes from Mike Sullivan, an advocate for people with Down syndrome who has also been a frequent commenter on my blog. Mike and I have a history of intense but respectful disagreement, so I’d like to comment on one of his points in that spirit. Mike argues that, “we shouldn’t endorse resources that mention abortion as an option following a diagnosis. The current status of the law doesn’t mean that we shouldn’t advocate for our community to be free from discrimination through birth prevention programmes. This is a social justice issue for our community and we need to oppose eugenics . . .”

There’s that word again: eugenics. The increasing availability and sophistication of pre-embryonic and prenatal screening for genetic disorders frequently leads to an accusation that such screening equals eugenics. I, as someone who chose to both employ pre-embryonic screening (unsuccessfully) and to write about the ethical questions surrounding such screening without taking a side against or for it, have occasionally been labeled a eugenicist. Is there anything to this claim? Do prenatal and pre-embryonic genetic tests equal eugenics, given that one potential outcome of such tests is either the destruction of affected embryos or the termination of pregnancies with affected fetuses, and thus the assurance that a certain number of babies with genes defined as “undesirable” will not be born?

No, prenatal and pre-embryonic testing do not equal eugenics, and insisting that they do leads to less conversation and more alienation, not better education or more informed decision-making. Here’s why:

Historically, “eugenics” refers to social movements, supported by governments, institutions, or influential public figures, that had a stated goal of purifying the gene pool either positively (by enabling those with traits perceived as positive to reproduce) or negatively (by forcibly sterilizing or otherwise limiting the reproductive capacity of those with traits perceived as negative).

In contrast, procreative decisions today (in democratic countries at least) are largely private decisions made by expectant parents primarily concerned with the well-being of their family, not the genetic make-up of society at large. To label such intimate (and difficult) decisions as “eugenics” is not only inaccurate in a historical context, but merely serves to further alienate expectant parents for whom detailed, informed, compassionate counsel is vital as they make these most difficult decisions. Would you trust your most intimate procreative decisions to someone who would label you a eugenicist for considering options that they perceive as unethical? Would you heed their advice? I wouldn’t.

The history of eugenics is one we certainly need to heed given the advances in genetic and reproductive science. The cumulative effect of individual parents deciding not to bear children with specific genetic anomalies could certainly be an unethical cultural pressure upon parents to produce only children perceived as desirable. In fact, I argue in my book No Easy Choice that such a pressure already exists, as our perfectionistic parenting culture and advances in reproductive screening feed off each other.

But such a pressure is not traditional eugenics unless it becomes institutionalized via government or institutional regulations (such as if insurance companies were to begin denying medical coverage to children born with genetic anomalies because their parents could have chosen to terminate). The frightening possibility of such institutionalized genetic discrimination is where advocates concerned about the eugenic possibilities of reproductive technologies ought to focus, rather than on individuals making reproductive decisions. We humans simply do not (cannot) make intimate procreative decisions while being primarily concerned with what those decisions mean in a cultural, rather than personal, context. While cumulative decisions by thousands of individuals can ultimately usher in cultural change, it is supremely unfair to label the hard decisions that individual couples make as “eugenics.”

Another mark of classic eugenics is coercion, in which governments or institutions violate human rights in the name of genetic purity. There is evidence that some medical professionals veer too close to coercion when counseling couples who have received an unexpected prenatal diagnosis, by emphasizing the option to terminate almost exclusively. This is an unacceptable practice, and many medical folks along with patient advocates are working hard to provide expectant parents with comprehensive information, including non-biased presentation of all of their options as well as contact with families who are living with the particular genetic anomaly with which their baby has been diagnosed. But biased medical advice is not coercion in the way that forcible sterilization is coercion.

In fact, I would argue that refusing to discuss abortion as a legal option, or telling expectant parents that abortion is unacceptable, veers a little too close to coercion, just as a doctor’s refusal to discuss any option other than termination does. In both cases, a person that expectant parents turn to for help in a hard time tries to convince them to embrace a particular vision for what kind of baby they should bear.

 

About Ellen Painter Dollar

Ellen Painter Dollar is a writer focusing on faith, parenting, family, disability, and ethics. She is the author of No Easy Choice: A Story of Disability, Faith, and Parenthood in an Age of Advanced Reproduction (Westminster John Knox, 2012). Visit her web site at http://ellenpainterdollar.com for more on her writing and speaking, and to sign up for a (very) occasional email newsletter.

  • http://nitecaravan.blogspot.com/ Br. Jay

    Thank you for your voice! There are no easy answers are there? Thank you for being a voice of reason and thoughtfulness.

  • http://kingdomcivics.com/2012/07/06/o-canada/ Tim

    “But such a pressure is not traditional eugenics unless it becomes institutionalized via government or institutional regulations”

    I wonder if it would also be properly called eugenics if it becomes systematized socially and culturally, so that it becomes normative even though there is no government or institutional coercion. Your thoughts?

    Tim

    • http://www.ellenpainterdollar.com Ellen Painter Dollar

      That’s a great question.

      I think that it’s entirely possible that we could see a phenomenon that we might call “popular eugenics,” in which the culture at large could, in the form of subtle or not-so-subtle messages that parents get via media, conversation, and the social institutions they interact with (schools, churches, etc.), put undue pressure on parents to make culturally sanctioned reproductive decisions. That is, to only have genetically desirable babies. And I think we can argue that such pressure already exists to some extent in the U.S.

      However, I would still be leery to apply the term “eugenics” to INFORMAL social pressure, unless that social pressure ultimately leads to tangible benefits for parents who choose to screen embryos or terminate pregnancies involving genetic anomalies, or tangible detriments for parents who choose not to screen or terminate. That is, I think we should be cautious about using the term “eugenics” unless school boards are refusing to educate children with genetic conditions, or insurance companies or doctors are refusing to treat them, or parents who choose to screen/terminate receive financial incentives to do so, or doctors, insurance companies, the government, or other bodies explicitly state that screening and/or termination are the preferred actions in every pregnancy and that all pregnant couples will be given incentives to take those actions. Such things are happening in some other countries, where governments are stating explicit goals to eradicate Down syndrome, for example, by pushing for screening and termination. Such tangible pressures are, indeed, eugenics.

      If the social pressure on parents to produce “desirable” children, however, remains intangible (even if worrisome and worthy of pushing back against), then I think it is dangerous to label that pressure “eugenics.” To make an analogy, many parents will tell you that the pressure on new mothers to make the “right” choice about feeding their babies is enormous. Mothers who choose to bottle feed, for example, are subject to enormous and inappropriate pressures, including being accosted by complete strangers in public who will tell them how they are failing their babies. While mothers who choose to breastfeed are told that doing so in public is bordering on pornography. Such pressure is not acceptable and we need to push back against it.

      But the fact remains that American mothers retain the right to feed their babies however they wish. They face subtle and not-so-subtle pressures to do it one way or the other. But in the end, their right to feed their baby as they wish remains, even if they may have to gird themselves to deal with various uncomfortable pressures and social situations. I think that as long as parents in the U.S. retain the right to do as they wish with their pregnancies, and will not gain either tangible benefits (educational, medical, financial, social) for producing genetically healthy offspring or receive tangible penalties for having children with genetic conditions, we should not use the term “eugenics” as a label for the social pressures they face. Which does NOT mean that we shouldn’t fight hard to alleviate those pressures.

      • http://www.ellenpainterdollar.com Ellen Painter Dollar

        And for the record…why am I so vehemently opposed to the term “eugenics” being used in anything but it’s official historical sense? Because I think calling our opponents in any debate Nazis never ever helps. We need to our language, our history, and each other by choosing words carefully.

        • http://kingdomcivics.com/2012/07/06/o-canada/ Tim

          When it comes to institutionalized eugenics, the Nazis have nothing on Americans (Buck v. Bell comes to mind). We just dressed ours up in more socially acepetable attire.

          Tim

          • http://aspecialmotherisborn.blogspot.com/ Leticia Velasquez

            Actually we are more to blame than that. I did research on eugenics and found far more eugenics going on in the US that that. Buck v Bell in 1926 was merely a reflection of the eugenics going on throughout the USA at the time. Eugenics was highly respected and widely practiced, especially in the USA: in the South, with compulsory sterilizations of 60,000 citizens, mainly African Americans, in New York with the Negro Project of Margaret Sanger which sought to lower the African American populations via birth control. In her publication, Sanger said,
            “The purpose in promoting birth control was “to create a race of thoroughbreds,”
            “More children from the fit, less from the unfit—that is the chief aim of birth control.”
            Birth Control Review, May 1919
            Sanger said worse, “On blacks, immigrants and indigents:
            ”…human weeds,’ ‘reckless breeders,’ ‘spawning… human beings who never should have been born.” Margaret Sanger, Pivot of Civilization
            On the West Coast there were many eugenics facilities in Silicon Valley. In 1904, the Carnegie Institution established a laboratory complex at Cold Spring Harbor on Long Island that stockpiled millions of index cards on ordinary Americans, as researchers carefully plotted the removal of families, bloodlines and whole peoples. From Cold Spring Harbor, eugenics advocates agitated in the legislatures of America, as well as the nation’s social service agencies and associations.
            The Harriman railroad fortune paid local charities, such as the New York Bureau of Industries and Immigration, to seek out Jewish, Italian and other immigrants in New York and other crowded cities and subject them to deportation, trumped up confinement or forced sterilization.
            By far the most damning connection is that the Rockerfeller Foundation funded a eugenics institute in Germany until just before WWII which hired the infamous Dr Mengele. When it comes to eugenics, this nation is guilty, guilty, guilty. Read more in this August 9,2012 article in the San Francisco Chronicle. http://www.sfgate.com/opinion/article/Eugenics-and-the-Nazis-the-California-2549771.php
            The question is can we say with absolute certainty that eugenics has truly ended
            when routine prenatal testing is required by governments such as Mike Sullivan’s native New Zealand? What is the underlying purpose of prenatal testing? It is now being argued in the European Court oh Human Rights that eugenic abortion is a civil right http://www.stopeugenicsnow.org/
            It is even arising as an issue in the USA with new prenatal tests such as the non invasive MaterniT21, which may be part of the prenatal testing covered by the Affordable Care Act. Could it be the intent of the Obama administration to prevent children with Down syndrome from being born? Tucker Carlson pointed out in a 1996 Weekly Standard article that Joycelyn Elders, in 1990, when she was Arkansas state health director, testified before Congress that “abortion has had an important, and positive, public-health effect,” in that it has reduced “the number of children afflicted with severe defects.”
            “As evidence, the future (U.S.) surgeon general cited this statistic: ‘The number of Down syndrome infants in Washington state in 1976 was 64% lower than it would have been without legal abortion,’” Carlson wrote.
            http://www.ncregister.com/daily-news/is-the-hhs-taking-aim-at-babies-with-down-syndrome/
            Ms Dollar, at a talk you gave this Tuesday in Connecticut, the point was raised that women feel that they have an obligation to bring to birth only healthy children who will not be a burden upon society. Where did this ‘obligation’ arise if not from our extensive history of eugenics, which has affected our national consciousness, even what we consider private decisions? Can we really say that we are free of such deep seated cultural influences?

          • http://www.ellenpainterdollar.com Ellen Painter Dollar

            “Where did this ‘obligation’ arise if not from our extensive history of eugenics, which has affected our national consciousness, even what we consider private decisions? Can we really say that we are free of such deep seated cultural influences?”

            I have no argument with these conclusions. That sense of “obligation” certainly is related to a history of eugenics and a mindset that resembles that of those who first touted the idea of eugenics. And I would never say that we are free of these cultural influences. Indeed, I have said both here and in my book that those cultural influences trouble me. I still think it’s important that we not use the word “eugenics” in a way that defies its history and definition, and I say that for very practical reasons: I don’t think using that word helps move the conversation forward because it is such a harsh and alienating word. Again, if we wish to reach out to parents making decisions about prenatal testing, termination, and/or PGD, do we want to alienate them by accusing them of “eugenics,” or invite them into an informed and compassionate conversation in which we recognize that they are merely trying to make decisions that are best for their families, not engaging in a widespread program of genetic purity? The problem, as you know, is that often parents are making decisions in an environment in which they DON’T get adequate and comprehensive information, in which the option to terminate is presented as the best. This is absolutely wrong and we’ve got to fight against it. But let’s not put barriers into the conversation by using a word like “eugenics” in a way that’s neither accurate nor compassionate. Saying to those parents, “If you choose this option, you’re a murderer and/or eugenicist, whereas if you choose this option, you’ve done the right thing,” doesn’t exactly sound like a compassionate and helpful way to engage people in a difficult time.

            Again, if we want medical folk to stop presenting termination as the only right choice and a parental obligation to help make a better society, we can’t then turn around and present other options (continuing the pregnancy, refusing prenatal testing, opting out of PGD) as the only right choice and a parental obligation to help make a better society.

            It was a pleasure to meet you at the library and I look forward to reading your book!

      • http://kingdomcivics.com/2012/07/06/o-canada/ Tim

        Thanks Ellen. Those are great insights and really helpful for me.

        Tim

  • http://www.ellenpainterdollar.com Ellen Painter Dollar

    Argh… We need to HONOR our language, history and opponents…

    • http://lightenough.wordpress.com/2012/08/10/have-you-sealed-up-the-very-fountain-for-which-you-are-thirsty/ Tim

      Yeah, knew what you meant.
      ;-)

  • Autistic

    “But such a pressure is not traditional eugenics unless it becomes institutionalized via government or institutional regulations”

    But it’s still Eugenics.

    • http://www.ellenpainterdollar.com Ellen Painter Dollar

      It is indeed something, and it is something worrisome and in need of diligent conversation and push back. I’m just hesitant to label it “eugenics,” because I feel that is both inaccurate (using the word in a way that is different from its definition) and alienating to those, such as parents dealing with a prenatal diagnosis, who we need to be in conversation with.


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