Ruth Graham examines the question of screening for Down’s Syndrome (often as a prelude to abortion) in this excellent article, particularly the question of trying to focus on giving information:
Even in the best of circumstances, the conversation is a high-wire act for doctors, especially with early tests that indicate a likelihood but no certainty. “Calling someone is really complicated because I don’t have a diagnosis, I have a tiny grenade in my hand and we have to decide what do next,” said Chavi Eve Karkowsky, a maternal-fetal medicine specialist (and occasional Slate contributor). As the diagnosis unfolds, the doctor may have to address complex medical prognoses, cultural values, family dynamics, further testing, and sometimes even the mathematics of probability with a woman who may still be in shock or denial. Early blood tests are nondiagnostic and reveal only a fetus’s probability of various disorders; the results can be confusing for almost anyone. “It becomes hard to give people useful information,” Karkowsky said. “It often becomes a conversation about, ‘How worried should I be? What would you do?’ ” The doctor must also make clear that decisions about termination must happen within a specific, often narrow, window of time in order to be legal—and attempt to do so without pressuring the woman into choosing that course.
Some disability activists have promoted another kind of legislation that could affect women’s decisions in the wake of a prenatal diagnosis: “Pro-information” laws require doctors and genetic counselors to provide what advocates call a more “balanced” portrait of the disability at the point of diagnosis. Some pro-information advocates believe that if they could just give prospective parents a true picture of life with a Down syndrome child, more women would choose to go forward with their pregnancies. In many ways, they argue, there has never been a better time in history to have Down syndrome, or to have a child with the condition. The life expectancy of a baby born with Down syndrome is almost 60 today, compared with 12 in 1949, and children are regularly incorporated into mainstream classrooms. Cultural visibility is now high, too, between the 2018 Gerber baby, the A&E reality show Born This Way, and American Idol.
Of course, mandating “information” would not be a magic fix for an extremely knotty issue. Arthur Caplan, a bioethicist who has been tracking the impact of prenatal genetic testing since the early 2010s, doesn’t believe that the information delivered along with a prenatal diagnosis can really reverse the obvious trend line toward earlier and easier identification of an ever-widening spectrum of conditions, from cleft palates and cystic fibrosis to, perhaps someday, autism. Pro-information legislation wouldn’t “get far in knocking down the high termination rate,” he said. “And more tests are coming.”
Some also say the pro-information approach violates the core norm of neutrality in the field of genetic counseling. “It’s hard to describe how big the burden of history is for genetics,” Caplan said. This is science, after all, that has been used to promote involuntary sterilizations, bans on interracial marriages, and Nazi eugenics. “People in the [Down syndrome parent] community like to say geneticists are not our friends,” said Holly Christensen, a parenting columnist for the Akron Beacon Journal and the mother of a 5-year-old girl with Down syndrome. She herself opted for a second-trimester screening method that came back with inconclusive results; her daughter was diagnosed after birth. While she has written critically about the Ohio abortion ban, she also remains wary of what might happen the more we’re able to find out about a baby’s characteristics before it comes to term. “As a society,” she said, “we’re starting to really have a conversation about what it means to be human.”
Any clinician who’s practiced obstetrics in the US knows how hard it can be to have a conversation about the information that comes along with positive test results. Many of the newer tests and ultrasound markers (which are coming along earlier and earlier… presumably to make an earlier abortion more accessible) end up spitting out risk profiles rather than definitive yes/no answers, and in the end giving “more information” does not always make things clearer for a mother and her family.
When it comes to information about the condition itself and the resources available, that may seem to be more morally neutral. However, the value of this information is also weighted (or outweighed) by the social and political context in which it is given. A country with a robust health system that provides health care for everyone and has supports for the disabled isn’t necessarily a place where children with disabilities are less likely to be aborted. (Iceland is a good example.) This puts the lie to the idea that promoting universal health care and other social supports for mothers and children can replace legal restrictions on abortion.
Another aspect to this that is fortunately rare, but often weighs on the mind of providers is the existence of wrongful birth lawsuits. That seems like a particularly horrifying turn of phrase, and it is: if a doctor fails to properly test for and provide information to parents who later decide that, had they had that information, they would have terminated the pregancy, they can sue the doctor. This, of course, is congruous with the standard of care that advises doctors to offer screening, and presumably in an information-greedy society we will continue to demand more and more information regardless of its value.
For my own family, we have done our best to opt out of everything except for the anatomy scan, an ultrasound done around 20 weeks that would reveal any obvious fetal abnormalities (and other concerning conditions). This would allow us to be prepared in case there were any conditions requiring immediate intensive care after birth, but would free us from the burden of making decisions should we have an ambiguous blood test necessitating further and more invasive testing.