When writing about reproductive ethics, I’m not in the business of telling people what to do. Occasionally, however, I offer my opinion on particular uses of reproductive technology. One practice that I find unacceptable is gender selection of embryos and fetuses for non-medical reasons. (A medical reason for gender selection would be if a family had a history of a serious sex-linked genetic disorder.)
In the U.S. and Canada, prenatal gender selection is driven partly by immigrants from patriarchal cultures, where women are often under pressure to produce male heirs. In other cases, gender selection is driven by a mother’s desire for the daughter she has always dreamed of having; she envisions a uniquely close mother-daughter bond, buying pretty clothes, and sharing interests.
In the Canadian Medical Association Journal, editor Rajendra Kale recently recommended that gender-identification ultrasounds be postponed until 30 weeks gestation to prevent parents from aborting a fetus of the unwanted gender. In response to that article, law professor Roxanne Mykitiuk wrote an op ed for the Globe and Mail asking why we should stop at trying to prevent abortions for gender. She writes:
I, as both a woman and a mother of a child with an ultrasound detectable anomaly, believe that Dr. Kale’s arguments about discrimination could be extended to fetal characteristics other than the presence of female and male genitalia. In a society committed to protecting the equality rights of women and persons with disabilities, we should be just as concerned about the use of ultrasound to identify and eliminate fetuses on the basis of disability as we are about sex.
I have many concerns about why and how preimplantation and prenatal screening for disabilities occurs—concerns about the pressures parents face to produce “successful” children; the information parents get (or don’t get) from medical professionals before and after screening; and potential cultural changes in a society where it becomes both possible and expected for parents to ensure that they don’t have sick babies. I also grieve the use of technology to screen for relatively minor and/or treatable anomalies (missing digits, cleft palate) and non-disease traits (such as hair or eye color, as well as gender).
However, I don’t share Mykitiuk’s belief that screening for gender and screening for genetic anomalies are two sides of the same coin. I do not support use of prenatal screening for gender selection. I do, however, support parents’ right to screen for medical conditions that will seriously affect their child’s health, cause pain, and require significant medical interventions.
Unlike Mykitiuk and some other advocates for those with disabilities, I don’t assume that screening for disabilities inherently devalues people living with those disabilities. I have discussed this idea, along with a paper by medical ethicist Janet Malek that discredits the logic behind this assumption, more extensively on my former blog.
I also take issue with other assumptions that Mykitiuk makes about disabilities. By equating prenatal selection for disabilities with selection for gender, Mykitiuk implies that our perception of people with disabilities is entirely a social construct, just as how we value the genders is a social construct.
Cultural and individual preferences for boys or girls are based on socially constructed, culturally sanctioned notions of who should provide for families, which of life’s many tasks are most valuable, how children of each gender should dress, play, and relate to others, etc. Fundamentally, however, such judgments are false; any notion that boys or girls are more desirable is based solely on human prejudice, not inherent qualities of boys or girls. Social mores can change so that children don’t grow up being told what they can and can’t do based on their gender.
Similarly, some people see disabilities as socially constructed. They argue that disabilities are disabling not because of inherent qualities, but because of how people and cultures treat those who are different. They argue that if we change our public and private spaces, our schools and workplaces and recreational facilities, our attitudes and assumptions, to accommodate and recognize people with disabilities as capable and valuable, then people will no longer be “disabled” by a diagnosis.
I absolutely agree that such changes would improve the lives of millions of people with disabilities, not to mention enrich and improve their communities. But I do not perceive disabilities as fundamentally value-neutral, the way that gender is fundamentally value-neutral. There are many socially constructed limitations on people with disabilities that should rightly be torn down. But many disabilities also have inherent qualities—pain, limitations, the disabling of essential physical and psychological functions—that cannot be fixed by making our society more accepting and accommodating.
It may very well be that certain diagnoses that we currently perceive as disabling really aren’t disabling once we remove social and cultural barriers and prejudices. But my disability, osteogenesis imperfecta (OI), is not a social construct. It is a painful, debilitating condition.
My gut tells me that bones breaking when a child sits down on the bathroom floor, as once happened to me; or lungs filling up with mucus when they shouldn’t, as in cystic fibrosis; or muscles wasting away, as in muscular dystrophy; or aortas bursting open with no warning, as in Marfan syndrome, are fundamentally bad things. Is “evil” too strong a word? I’m not sure. They are somehow a manifestation of the separation between what God intends and desires for humankind on one hand, and on the other hand what humankind actually lives with, day after heartbreaking day. Arguing that these conditions are value-neutral manifestations of human diversity, akin to gender, feels inadequate.
Ultimately, my husband and I decided to have the babies we would have, without using preimplantation genetic diagnosis, even with the chance they would inherit my OI gene. We did use prenatal screening (amniocentesis) for one reason only: So we would know what medical issues we were dealing with when our babies arrived.
But I have talked to women who decided after prenatal screening to terminate pregnancies with babies who would experience significant pain, disability, and illness. While I might not have made the same decision, I trust these women when they say they did it not because they see babies with genetic anomalies as less valuable, but to spare their babies terrible suffering.
I don’t think such decisions are at all the same as decisions to abort a baby girl because her father’s family wants a son to carry on the family name, or to abort a baby boy because a mother says that her sons haven’t completely fulfilled her desires as a parent. Arguing that they are the same belittles the suffering that people with many types of disabilities experience—not because of how other people treat or perceive us (although that can cause a different kind of pain), but because these disabilities cause real damage to body, mind, and spirit.