Disabling Pregnancy: Revealing how prenatal testing messages shape reproductive choices

Thesis (Ph.D.)--University of Washington, 2015Amniocentesis or chorionic villus sampling to diagnosis Down syndrome has long been an exemplar for prenatal genetic testing. With nearly 50 years of clinical application, the public has some awareness, knowledge, and expectations about such tests and Down syndrome. Yet, current evidence suggests that accepting or refusing testing is complex; the rationales for and narratives about doing so are nuanced. This scholarship highlights that patient expectations about commonly accepted tests are not necessarily always well-informed. While some enter this process as informed consumers seeking information, many accept testing with the hopes of reassurance about a healthy baby, and others accept a routine offer from their clinician. I qualitatively explore policy statements, health education, radio, newspapers, YouTube videos, and epidemiological data about Down syndrome birth prevalence to illuminate the interrelated, normative expectations about parental responsibilities, testing utility, and reproductive choices. Across all data types, repetitive medical language about Down syndrome and limited discussion about testing purpose, risks, and benefits may offer inadequate or misinformation about such testing, making it difficult for risk-benefit assessments. Sources often frame prenatal testing as offering valuable, personal knowledge. They also suggest that prenatal testing provides early detection and disability prevention by means of pregnancy termination. In order to empower patients with the information and support needed to make the best reproductive choices for themselves and their families, we need: to ensure accurate and up-to-date information about Down syndrome and other prenatally diagnosable conditions is readily available; to include diverse perspectives in related health education and communication; and to direct attention to access issues that may constrain these choices