Misinformed consent: Understanding health messages about prenatal testing and how to improve them

Background.  With increasing amounts of information available online, health education is often received outside the clinical encounter.  Prospective parents may engage with information about prenatal genetic testing at multiple time points and from an array of sources.  To date, little is known about how online health materials compare to printed ones.

Purpose.  To evaluate the accessibility, acceptability and quality of health communication about prenatal genetic testing distributed by nonprofit and government organizations, as well as primary care and genetic specialty clinics.

Methods.  A purposive sample of 30 health education materials were analyzed.  These texts were qualitatively explored to assess:  the purposes of testing, the benefits, harms, and costs; the framing of disability; as well as key actors and their potential conflicts of interest.  Through an iterative process, two independent reviewers coded these texts, and codes were built into themes.

Findings.  Online materials are sometimes as physically difficult to access as printed ones, requiring knowledge of website or a hyperlink.  Most sources discuss testing’s purpose, benefits, and harms, but especially from nonclinical sources, genetic and risk information is poorly explained.  Materials sometimes fail to distinguish screening and diagnostic testing.  Overuse of problematic language about disability may stigmatize reproductive choices.

Conclusions.  In order to improve health education materials about prenatal genetic testing, interdisciplinary collaboration between genetic counseling, public health, and primary care providers is needed.  Broader health education efforts addressing genetics may help facilitate informed consent and empower prospective parents to make the best decisions for themselves and their families.