Reflections on 'common' genetic medical history questions: Time to examine the what, why, and how.

Abstract

A central goal of patient-centered care is to establish a therapeutic relationship. While remaining in tune with patient emotions, genetics providers must ask questions to understand medical histories that will inform the differential diagnosis, evaluation plan, and potential treatments. 195 audio-recorded conversations between providers and caregivers of pediatric patients with suspected genetic conditions were coded and analyzed. Coders identified sensitive history-taking questions asked by providers related to exposures and complications during pregnancy; ancestry and consanguinity; educational attainment of the caregiver; and family structure. We highlight examples of providers: using stigmatizing language about conception or consanguinity; not clarifying the intent behind questions related to caregivers' educational attainment and work history; and making presumptions or assumptions about caregivers' race and ethnicity, family structure, and exposures during pregnancy. Some questions and phrasing considered routine by genetics providers may interfere with patient-centered care by straining attempts to establish a therapeutic, trusting relationship. Additional research is needed to assess how question asking and phrasing impact rapport building and patient experience during genetics encounters. Review of the purpose and need for medical history questions common to genetics practice could serve to improve patient-centered care.