Session: Addressing Race as a Category in Medicine
Questioning the Use of Ancestry Labels in Clinical Genomics
Thursday, September 19, 2024
10:45 AM – 11:45 AM CT
Location: Grand Ballroom C (First Floor)
Abstract: The use of ancestry labels in genetic counseling has been the subject of debate and critique in recent years, particularly regarding whether and when it is appropriate to inquire about patients' ancestry. In current practice, clinicians rely on imprecise and one-size-fits-all guidance about how to discuss ancestry, how to incorporate this information into clinical decision-making, and what kinds of ancestry labels (if any) are appropriate to use. The conceptualization of race, ethnicity, and ancestry within medicine has a complicated history, and these concepts are often used interchangeably within clinical genetics and our broader society despite their distinct meanings. It is critical to analyze the ethical implications, clinical utility, and potential consequences associated with seeking ancestral details as the landscape of genetic counseling continues to transform.
We argue that the ethical permissibility of asking for ancestry information in clinical practice is dependent upon three considerations: 1) the equity, access, and eligibility implications of doing so; 2) the potential for ancestry-based testing to exacerbate the health-related consequences of existing disparities in knowledge about genetic variants in people with different geographical origins; and 3) the possible damage that asking for this information causes to the therapeutic clinical relationship between a clinician and patient. Narrative medicine highlights important lessons from the approaches to patient care, offering a patient-centered and intersectional framework that advocates for utilizing ancestry information as a narrative device that allows patients to articulate their social identities to clinicians if they so choose.
Learning Objectives:
After participating in this conference, attendees should be able to:
critique the current ways a patient’s ancestry information is utilized in the genetic counseling encounter.
identify key arguments for and against inquiring about patients’ ancestry.
recognize the value of inviting patients to share their identities with clinicians before, during, or after undergoing genetic testing.
Leila Jamal, ScM, PhD, CGC – Center for Cancer Research, Genetics Branch, National Cancer Institute and NIH Department of Bioethics – National Institutes of Health; Sara Hull, PhD – NHGRI, Bioethics – National Institutes of Health