Interest and attitudes of patients with advanced cancer with regard to secondary germline findings from tumor genomic profiling

Abstract

Purpose Tumor genomic profiling (TGP) can reveal secondary findings about inherited disease risks in a patient with cancer. Little isknownabouthowpatients with advanced cancer, currently the primary users of TGP, perceive the benefits and harms of secondary germline findings. Methods Weconducted semistructured interviews with 40 patients with advanced breast, bladder, colorectal, or lung cancer who had TGP. Qualitative interview data were evaluated by using a thematic content analysis approach. Results Most participants expressed interest in the prospect of learning their secondary germline findings (57%), although a minority was equivocal (29%) or disinterested (14%). Reasons for these preferences varied but were influenced by participants' perceptions of diverse benefits and harms of this information, which they regarded as relevant to themselves; their families; and other patients with cancer, medical science, and society. These attitudes were uniquely shaped by participants' personal disease experiences and health status. Conclusion Many patients with advanced cancer are interested in learning secondary germline findings and hold optimistic and perhaps unrealistic beliefs about the potential health benefits. Patients also have important concerns about clinical and emotional implications of this information. These perceptions are necessary to address to ensure that patients make informed decisions about learning secondary germline findings.