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

Objective: 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.

Methods: 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.

Results: 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.

Conclusion: 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.

Practice implications: Review of the purpose and need for medical history questions common to genetics practice could serve to improve patient-centered care.