Ellen Painter Dollar
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.
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