Narratives before numbers: Reimagining conversations about race, ethnicity, and ancestry information in genetic counseling practice

As genomic testing becomes more common, it is essential to re-examine practical and ethical arguments for and against eliciting race, ethnicity, and ancestry (REA) information from patients as a default practice in genetic counseling. In this article, we evaluate current and historical reasons for using REA information in clinical genetics encounters. We argue that in many, if not most, cases, the value of this practice for patient risk assessment and the establishment of test eligibility is questionable. This does not mean we do not see any value in the practice of discussing REA at all. Rather, we propose that discussions about REA should be patient-led and relevant to discussions about their experiences, values, and goals. To facilitate this change, we offer some practical reasons for limiting the default practice of collecting REA information in genetic counseling. Additionally, we evaluate the ethical acceptability of this practice, anchoring our ethical analysis in three considerations: (1) the impact of the use of REA information in determining eligibility for genetic testing and assessing genetic risk; (2) the influence of inequitable genomic database representation; and (3) the effect of discussing REA on the therapeutic relationship. Our analysis of these considerations leads us to argue for a patient-centered, narrative framework that treats the collection of REA information as a way of encouraging patients to articulate the relevance of these identities to their counseling goals, if and in which context they choose.