Information preferences of high literacy pregnant women regarding informed consent models for genetic carrier screening

Abstract

Objective With the increasing carrier screening options being offered to pregnant women, it is critical to consider what information women want in an informed consent process, and how they make decisions regarding screening. Methods We surveyed 201 pregnant women. Results Subjects prefer “to have as much information as possible” (84%), and valued their physician's recommendations (82%) regarding screening. After reviewing two hypothetical scenarios, 71% of participants preferred more information about genetic carrier screening; however, some participants expressed concern that too much information can also lead to anxiety. When specifically asked about components of a potential informed consent process, the highest preferences were to include: the chance of having a child with the disorder (97%), the options for carriers (93%), the value and purpose of testing (91%), and the prognosis if a child has the disease (94%); preference for “symptoms” information differed based on scenario preference ( p < 0.001). Conclusion This study is the first to document variation in patients’ views regarding the information desired as part of the informed consent process. Practice implications Providers should consider ways to ascertain their patients’ preferred informational style, and how to provide information in the amount and style that patients find useful in making decisions.