Just a few weeks ago, I held the hand of a young mother whose prenatal screening indicated a high risk for Down syndrome in her fetus. She was understandably worried, and we talked about our next steps to confirm the test.
As an obstetrician with additional training in high-risk pregnancy, I see my role in these situations as a supportive presence, someone who provides honest information, assuages fears, and walks with the patient down whichever road she chooses.
Some of our state legislators, however, feel there should be only one path.
Rep. Karianne Lisonbee’s proposed legislation, House Bill 166, bans abortions when a diagnosis of Down syndrome is the primary reason. The representative justifies the need for this legislation by claiming that the ugly underbelly of fetal genetics and obstetric care in Utah is a quiet genocide against individuals with disabilities. She claims that 80 to 90 percent of Down syndrome diagnoses result in termination.
However, my personal experience walking this path with patients is that the majority choose to continue the pregnancy. In fact, over the last 10 years in Utah, among those pregnancies affected by Down syndrome, only 9 percent ended in termination. Utah patients clearly choose many paths when faced with this diagnosis.
This year’s bill is nearly identical to one Lisonbee introduced last year. That bill faltered because lawmakers believed a court challenge would prove costly for Utah’s taxpayers. This year, Lisonbee assuaged her detractors by incorporating “trigger language.” This legislative sleight-of-hand generally is unique to abortion laws, in which restrictions at the state level go into effect only if a higher court permits them. This makes the abortion provision essentially meaningless unless significant changes in abortion law occur.
Stripped of any immediate consequences for abortion, Lisonbee must now sell this bill on the necessity of its educational provisions. The legislation directs Utah’s Department of Health to create a website clearinghouse for information about parenting children with Down syndrome. On its face, this is great. But no oversight is required. Any group can request to have their information included, and I, as a medical professional, am required to direct patients to this information regardless of its quality. Furthermore, I am only required to tell a patient this resource exists after a patient chooses termination. Education that occurs after the patient has made her decision does not improve informed consent – it simply serves as a barrier to care.
Lisonbee has stated it is “routine practice” for doctors to insist women terminate after screening tests suggest Down syndrome. Screening does not constitute a diagnosis, and furthermore, telling a woman she “must” terminate falls far outside the guidelines of the American College of Obstetricians and Gynecologists or the Society for Maternal Fetal Medicine.
Even after a definitive diagnostic test, I have never spoken those words, nor heard them from other obstetricians. While it may occur, it is certainly not routine nor appropriate. Because the abortion question is off the table, the representative has turned instead to vilifying doctors in order to pass her legislation. Despite our dedication and years of education, she would have you believe we can’t be trusted to give women fair and full information.
I am humbled every day by the patients who trust me to share their path, and to offer expertise and a listening ear as they maneuver through some of the most vulnerable, heartbreaking, and rewarding moments in their lives. While patient education is crucial to this partnership, HB166 is not about patient education. It entrenches restrictive, unenforceable abortion restrictions into Utah law, riding on the coattails of an educational requirement that demeans women and their doctors.
Michelle Debbink, M.D., Ph.D., is a clinical fellow in the Division of Maternal-Fetal Medicine, Department of Obstetrics and Gynecology, University of Utah Health.