Understanding perceptions of tumor genomic profile testing in Black/African American cancer patients in a qualitative study: the role of medical mistrust, provider communication, and family support

Caseem C Luck; Sarah Bauerle Bass; Yana Chertock; Patrick J A Kelly; Katie Singley; Ariel Hoadley; Michael J Hall

doi:10.1007/s12687-024-00700-3

Understanding perceptions of tumor genomic profile testing in Black/African American cancer patients in a qualitative study: the role of medical mistrust, provider communication, and family support

J Community Genet. 2024 Jun;15(3):281-292. doi: 10.1007/s12687-024-00700-3. Epub 2024 Feb 16.

Authors

Caseem C Luck¹, Sarah Bauerle Bass², Yana Chertock³, Patrick J A Kelly⁴, Katie Singley², Ariel Hoadley², Michael J Hall³

Affiliations

¹ Risk Communication Laboratory, Department of Social and Behavioral Sciences, Temple University College of Public Health, 1301 Cecil B Moore Ave, Rm 947, Philadelphia, PA, 19122, USA. caseem.luck@temple.edu.
² Risk Communication Laboratory, Department of Social and Behavioral Sciences, Temple University College of Public Health, 1301 Cecil B Moore Ave, Rm 947, Philadelphia, PA, 19122, USA.
³ Department of Clinical Genetics, Cancer Prevention and Control Program, Fox Chase Cancer Center, 333 Cottman Avenue, Philadelphia, PA, 19111, USA.
⁴ Department of Behavioral and Social Sciences, Brown University School of Public Health, 121 South Main Street, Providence, RI, 02903, USA.

Abstract

Tumor genomic profiling (TGP) examines genes and somatic mutations specific to a patient's tumor to identify targets for cancer treatments but can also uncover secondary hereditary (germline) mutations. Most patients are unprepared to make complex decisions related to this information. Black/African American (AA) cancer patients are especially at risk because of lower health literacy, higher levels of medical mistrust, and lower awareness and knowledge of genetic testing. But little is known about their TGP attitudes or preferences. Five in-person focus groups were conducted with Black/AA cancer patients (N = 33) from an NCI-designated cancer center and an affiliated oncology unit in an urban safety-net hospital located in Philadelphia. Focus groups explored participants' understanding of TGP, cultural beliefs about genetics, medical mistrust, and how these perceptions informed decision-making. Participants were mostly female (81.8%), and one-third had some college education; mean age was 57 with a SD of 11.35. Of patients, 33.3% reported never having heard of TGP, and 48.5% were not aware of having had TGP as part of their cancer treatment. Qualitative analysis was guided by the principles of applied thematic analysis and yielded five themes: (1) mistrust of medical institutions spurring independent health-information seeking; (2) genetic testing results as both empowering and overwhelming; (3) how provider-patient communication can obviate medical mistrust; (4) how unsupportive patient-family communication undermines interest in secondary-hereditary risk communication; and (5) importance of developing centralized patient support systems outside of treatment decisions. Results improve understanding of how Black/AA patients perceive of TGP and how interventions can be developed to assist with making informed decisions about secondary hereditary results.

Keywords: Black/African American cancer patients; Genetics; Qualitative research; Tumor genomic profiling (TGP).