Over the weekend, Quartz published a post about the prevalence of Down syndrome in Iceland. Drawing statistics from a recent CBS report, Bonnie Rochman, author of The Gene Machine, writes, “In Iceland, nearly every woman who undergoes prenatal testing and whose fetus receives a diagnosis of Down syndrome decides to end her pregnancy.”
Note the word “decides.” No one is forcing women in Iceland to choose abortions — individual women are making those decisions. From this statement of fact, Rochman makes a shaky leap: “In essence, pregnant women in Iceland — and presumably their partners — are saying that life with disability is not worth living.”
Does this language sound familiar? It should. This is the kind of rhetoric anti-abortion politicians use to justify abortion restrictions — to strip women and their families of control over their health and their futures.
According to the Guttmacher Institute, in 2013, North Dakota became the first state to ban abortion for genetic abnormalities, while other states require counseling about perinatal hospice services if an abortion is sought for a genetic abnormality. Some states use the same line of thinking to outlaw wrongful birth, the legal course of action available to women when crucial prenatal tests are mishandled.
Laws and sentiments like the above are nothing more than tools used to dismantle women’s rights. The truth is that pregnant women choose to end pregnancies for lots of reasons, and none of them are our business. Rochman is only adding to anti-abortion sentiments disguised as concern for children and society.
According to Rochman, “Deciding what sorts of lives are worth living brings us disturbingly close to the bygone era of eugenics, when only the ‘right’ sorts of people were supposed to procreate.” This language echoes the recent discussion of ethics and so-called “designer babies,” a conversation reinvigorated after scientists successfully modified human embryos. Gunnar Esiason, the son of football legend Boomer Esiason and an outspoken advocate living with cystic fibrosis, responded to gene-editing naysayers with a blog post written in his signature tone: “I have not dedicated my life to the fundamental goal of seeing a world where cystic fibrosis patients no longer have to live with a terminal illness, only to have someone fear for a future where he will be missing out on living with people who have disabilities. Give me a f*cking break.”
As a person actually living with a genetic anomaly, Esiason sees scientific progress — like prenatal testing and gene-editing technology — as evidence of a world more tolerant of disability and disease, not less. “My desire isn’t to assimilate into the world as a typical person,” he continues. “No one is typical. Everyone has his or her own battles to fight, whether or not they are health related.”
When a woman makes a decision to end a pregnancy for any reason, it’s her business and her business alone. Women in Iceland and elsewhere who end pregnancies because of — or unrelated to — Down syndrome are making no such statement about the merit of life with a disability. They’re simply making a personal decision, most likely one they’ve determined is best for them and their families.
The personal beliefs that go into that decision belong only to the woman who is pregnant. Bonnie Rochman and others like her should be ashamed of themselves for butting in — and we should be frightened by their willingness to.