Publication Date
10-18-2022
Keywords
Lynch syndrome, medical genetics, postmortem disclosure, family communication, bioethics
Abstract
Purpose: Genetic information has health implications for patients and their biological relatives. Death of a patient before sharing a genetic diagnosis with at-risk relatives is a missed opportunity to provide important information that could guide interventions to minimize cancer-related morbidity and mortality in relatives.
Methods: We performed semi-structured interviews with individuals diagnosed with Lynch syndrome at 1 of 4 health systems to explore their perspectives on whether health systems should share genetic risk information with relatives following a patient’s death. An inductive, open-coding approach was used to analyze audio-recorded content, with software-generated code reports undergoing iterative comparative analysis by a qualitative research team to identify broad themes and representative participant quotes.
Results: Among 23 participating interviewees, 19 supported health systems informing relatives about their Lynch syndrome risk while the remaining 4 were conflicted about patient privacy. Most (n = 22) wanted their Lynch syndrome diagnosis shared with relatives if they were unable to share and to be informed of their own risk if a diagnosed relative was unable to share. The most common issues noted regarding information-sharing with relatives included patient privacy and privacy laws (n = 8), potential anxiety (n = 5), and lack of contact information for relatives (n = 3). Interviewee perspectives on how health systems could communicate genetic findings generated a consensus: When — a few months after but within a year of the patient’s death; How — explanatory letter and follow-up phone call; and Who — a knowledgeable professional.
Conclusions: Interviews demonstrated strong and consistent perspectives from individuals diagnosed with Lynch syndrome that health systems have a role and responsibility to inform relatives of genetic findings following a patient’s death.
Recommended Citation
Hunter JE, Schneider JL, Firemark AJ, Davis JV, Gille S, Pawloski PA, Liang SY, Schlieder V, Rahm AK. Should health systems share genetic findings with at-risk relatives when the proband is deceased? Interviews with individuals diagnosed with Lynch syndrome. J Patient Cent Res Rev. 2022;9:282-9. doi: 10.17294/2330-0698.1945
Included in
Bioethics and Medical Ethics Commons, Clinical Epidemiology Commons, Congenital, Hereditary, and Neonatal Diseases and Abnormalities Commons, Health Services Administration Commons, Medical Genetics Commons, Neoplasms Commons, Oncology Commons, Preventive Medicine Commons
Submitted
January 14th, 2022
Accepted
April 20th, 2022
