Disclosure of reclassified VUS results of deceased patients to family members: current practice

Purpose: This study was designed to obtain current practices and opinions of genetic counselors surrounding the issue of disclosure for reclassified VUS results for a deceased patient to their relatives. Methods: A researcher designed survey was distributed to members of the National Society of Genetic Counselors. Results: Participants reported receiving reclassified VUS results in deceased patients (24%), a majority reported attempting disclosure at least once (93%). Respondents were more likely to disclose if the variant was reclassified as pathogenic (74%) vs. benign (48%). The deceased’s right to confidentiality was rated of lowest and the impact of the variant on family members rated highest importance. A legal mechanism to allow disclosure to relatives was favored by 71% and 97% felt the issue important enough to pursue if such a process was in place. A minority of participants felt a legal (10%) and ethical (27%) obligation of consent before disclosure, and a greater proportion were undecided on the legal (43%) and ethical (40%) need for consent. Conclusions: The disclosure of reclassified VUS results for a deceased patient is a complex issue which has little guidance. Results of this study clarify the current state of clinical practice and opinion on this issue and contribute to the understanding of this important public health issue