Germline genetic testing and privacy concerns in patients with mesothelioma.

PURPOSE: Mesothelioma, a disease overwhelmingly driven by asbestos exposure, is also associated with germline genetic changes that interact with asbestos to cause cancer. Very little about barriers to genetic counseling and germline sequencing in mesothelioma patients is known.

METHODS

We collected DNA, demographic data, and asbestos exposure data from 551 patients with mesothelioma at our center. As part of an Institutional Review Board-approved study, we sequenced 85 genes associated with hereditary cancer syndromes.

RESULTS

We identified germline pathogenic or likely pathogenic variants via research-based sequencing in 76 patients (19.1%) who were subsequently offered clinical-grade sequencing. Most (73%) patients declined clinical-grade testing, primarily citing concerns regarding discrimination related to employment, insurance, and asbestos-related litigation.

CONCLUSION

Mesothelioma patients with pathogenic/likely pathogenic germline variants are hesitant to pursue clinical-grade genetic testing, primarily because of discrimination concerns. These concerns likely stem from efforts to use genetic information against these patients in both insurance-related issues and asbestos-related litigation. Because asbestos exposure is the primary cause of mesothelioma, greater legal protections are needed for mesothelioma patients. These protections will enable physicians to optimize the care of patients and their family members, who may also be at risk for asbestos-related cancers and other tumors.