Germline genetic testing and privacy concerns in patients with mesothelioma. in Genetics in medicine : official journal of the American College of Medical Genetics / Genet Med. 2026 Mar 4;28(5):102550. doi: 10.1016/j.gim.2026.102550. (2026)

Tipo pubblicazione

Journal Article

Autori/Collaboratori (15)
Elenco ridotto

  • Mitchell ODSection of Hematology/Oncology, Department of Medicine, The University of Chicago, Chicago, IL.
  • Sneider APSection of Hematology/Oncology, Department of Medicine, The University of Chicago, Chicago, IL.
  • Gilliam KSection of Hematology/Oncology, Department of Medicine, The University of Chicago, Chicago, IL.
  • Gaudio DDDepartment of Human Genetics, The University of Chicago, Chicago, IL.
  • Gaduraju MSection of Hematology/Oncology, Department of Medicine, The University of Chicago, Chicago, IL.
  • Das SDepartment of Human Genetics, The University of Chicago, Chicago, IL.
  • Hathaway FSection of Hematology/Oncology, Department of Medicine, The University of Chicago, Chicago, IL.
  • Bryan DSDepartment of Surgery, The University of Chicago, Chicago, IL.
  • Tawde SDepartment of Human Genetics, The University of Chicago, Chicago, IL.
  • Galasinski SDepartment of Human Genetics, The University of Chicago, Chicago, IL.
  • Novembre JDepartment of Human Genetics, The University of Chicago, Chicago, IL.
  • Prince AERCollege of Law, University of Iowa, Iowa City, IA.
  • Churpek JEDivision of Hematology, Medical Oncology, and Palliative Care, Department of Medicine, University of Wisconsin, Madison, WI.
  • Kindler HLSection of Hematology/Oncology, Department of Medicine, The University of Chicago, Chicago, IL.
  • Drazer MWSection of Hematology/Oncology, Department of Medicine, The University of Chicago, Chicago, IL; Section of Genetic Medicine, Department of Medicine, The University of Chicago, Chicago, IL. Electronic address: michaeldrazer@uchicagomedicine.org.

Abstract

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.

PMID: 41795597