Managing unsolicited findings in genomics: A qualitative interview study with cancer patients

Abstract

The results of our study contribute to a better understanding of what cancer patients consider important and what may motivate and influence them when making decisions on the disclosure of unsolicited findings following NGS. We show how Joel Feinberg's classification of autonomy may help clinicians to better understand cancer patients' desire for autonomous decision making while also acknowledging the emotional and cognitive difficulties regarding the disclosure of unsolicited findings. These insights could be helpful for clinicians to guide patients through this complex process.

The New Genomics Era: Integration of genomics into mainstream oncology and implications for psycho‐oncological care

“…Cancer patients have reported feeling generally positive about acquiring information during the diagnostic genetic testing process. They described a desire to maintain control over other aspects of their lives, and this was one area they felt they could have some control, despite the complexity of genetic discussions . They viewed genetic testing as their own personal decision, although often consulting family members.…”

“…They viewed genetic testing as their own personal decision, although often consulting family members. Interestingly, patients reported being encouraged by family members to get results pertaining to secondary findings …”

“…Genetic information should be communicated in a way that maximises understanding and promotes health. Even cancer patients with high education levels find genetic concepts challenging . Information provision has been shown to be most effective using multiple formats.…”

“…Adding this to the burden of being the gatekeeper of genetic information and a duty to inform relatives can feel overwhelming . In one study, all participants reported that at least one family member would not want to be informed about genetic results, highlighting the complexity of emotional burden faced by patients.…”

Medical oncologists’ perspectives of the Veterans Affairs National Precision Oncology Program

“…A substantial number of unintended real-world consequences have been discovered with the accumulating use of comprehensive NGS panels. Patients are increasingly asked to handle complex genetic findings, which may be unrelated to their primary malignancies but convey greater risk for other tumors or non-malignant conditions [ 10 – 12 ]. Genetic counselors need more familiarity with molecular biology to discuss unforeseen mutations with referred patients [ 13 , 14 ].…”