Eliminating Intersex Babies Is Not a Legitimate Use of Genetic Embryo Testing
“Designer babies” seems like a concept from a dystopian future, but they’re here now: would-be parents who utilize in-vitro fertilization to conceive often also have the option of genetically testing embryos and then picking which one to implant.
Scientists can test for hundreds of things, from fatal genetic traits like Tay-Sachs and Huntington disease to non-fatal but culturally devalued embodiments like Down syndrome, deafness, blindness and intersex conditions.
Like pre-natal tests, the purpose of preimplantation genetic diagnosis (PGD) is clear: to allow women to choose which embryo or fetus to try to bring to term, and to terminate those which they do not. Like many scientists, I support women’s choices to terminate pregnancies or select against a potential fetus, even when I might prefer they did not. But it is important to acknowledge that using PGD to select against culturally devalued bodies, like those of people with disabilities or who are intersex, is simply a contemporary example of eugenics.
Eugenics is not a horrific memory of the past; it is an ongoing practice that hides under the guise of benevolent medical technology like PGD. Using these technologies to select against traits that we consider to be imperfections or deformities rather than normal and celebratory human variations reproduces the very prejudices –like intersexism, ableism and queerphobia – that oppress living people. Using technology to eliminate “imperfect” or “unviable” humans reproduces the false ideology that people with bodily variations have unliveable and pitiable existences.
Using PGD to select against intersex people is an especially pernicious use of the technology because it is done to reinforce the inadequate sex binary and even to police non-heterosexual, queer attractions or acts.
Intersex is a general term applied to (but not always claimed by) people with biological sex – genitals, chromosomes, gonads – that cannot clearly or exclusively be classified as male or female; it may, on a case-by-case basis, be the result of genetic, chromosomal or hormonal variations or environmental influences. It is estimated that around 1.7% of the population has intersex traits.
Intersex is commonly associated exclusively with variant (or “ambiguous”) genitalia, but intersex anatomy can become apparent at any point in life: at a routine medical exam, during puberty, whilst trying to conceive, or even after death during an autopsy.
Despite the fact that intersex “conditions” typically pose no health risk, intersex infants and children are often subjected to lawful but non-consensual sex or genital surgery to “cure” the “disorder” by ensuring that the child will grow up with genitals that can engage in heterosexual sex, even if genital sensitivity is compromised. Intersex and allied activists refer to this practice as mutilation.
Still, while overstating the medical issues intersex traits cause, certain bioethicists believe that using PGD to select against intersex embryos is both intuitive and benevolent because, they claim, the social stigma against intersex and the medical issues outweigh the potential positives of their lives. But, while it is true that intersex people will face social stigma and systemic oppression (as do women, LGBTQ folks, people with disabilities, and people of color) and they may experience medical issues (as do all people throughout their lives), eradicating potential people who face these very human experiences is not self-evidently logical. People’s embodied lives cannot be reduced to such an equation; it does not capture the complexities of being human.
And preventing the birth of intersex people is not a productive or ethical way to deal with or change discriminatory societal beliefs or the oppressively violent ways intersex people are treated. Society needs to change, not intersex bodies. Most of the trauma that intersex people experience comes from the social and medical response to their bodies, not their bodies themselves.
Rather than trying to reduce a potential life to an equation and investing our time and resources in eradicating these bodies, we ought to start valuing bodily variation and listening to people who live with and through difference. When we value bodily variance, unlearn our prejudices and listen, we can understand that our ideas about people’s relative happiness do not reflect the true value of their lives and bodies. Intersex people, along with those who are deaf and/or blind, people with Down syndrome and numerous other people with supposed disabilities and impairments not only lead fruitful and fulfilling lives but their innate value ought to be celebrated.
I do not support getting rid of PGD or limiting women’s choices; it is unethical to try to institute laws that limit women’s ability to practice bodily autonomy. And history has shown that laws that deny women this ability is dangerous – and does not and ought not prevent them from making the choices they know are right for them anyway. But we do need to think critically about which bodies we deem acceptable and viable, and how those beliefs create a cultural climate that still renders certain types of eugenics benevolent.
Instead of thinking about which lives are supposedly, inherently not worth living, we need to think about what we can do to celebrate bodily variance – how we can change to make every person’s life both liveable and filled with joy.