Understanding How Genetic Findings Affect Patients and Families

This research study invites people who have received unexpected genetic findings from genome or exome sequencing (DNA tests) to participate in interviews and surveys. Researchers want to understand how patients and their families learn about these findings, share them with healthcare providers and relatives, and follow up with recommended health actions. Some participants may also be invited to the NIH for special health assessments.

As DNA testing becomes more common, doctors and patients are discovering unexpected health risks in people's genes. This study exists because researchers still don't fully understand whether people understand these findings, whether they tell their families, whether they follow recommended care, or whether the findings are actually meaningful for their health.