Misinformed consent: Understanding health messages about prenatal testing and how to improve them
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.
Learning Areas:Advocacy for health and health education
Conduct evaluation related to programs, research, and other areas of practice
Ethics, professional and legal requirements
Other professions or practice related to public health
Public health or related education
Explain the difference between prenatal genetic screening and prenatal genetic (diagnostic) testing Name at least 1 example of prenatal genetic screening Name at least 1 example of prenatal genetic (diagnostic) testing Identify at least 3 resources for health education materials related to prenatal screening and testing for Down syndrome
Keyword(s): Health Literacy, Perinatal Health
Qualified on the content I am responsible for because: I am a third year medical student with a background in the public health. I have been a co-investigator on multiple studies focusing on Down syndrome and am an advocate for greater inclusion of people with disabilities in the medical curriculum.
Any relevant financial relationships? No
I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.