HEALTH LAW Genetic Diseases and the Duty to Disclose

Amy, a long-term patient of yours, has been diagnosed with a bipolar disorder that has a hereditary component likely to manifest itself in some of her relatives. While efforts to identify specific susceptibility genes are still underway, disclosure of her test results to siblings and children, followed by careful monitoring, could improve the future health of her family. Worried about the possibility of estrangement, however, Amy says that she is unwilling to warn her at-risk relatives of the genetic link to bipolar disorder that they may share. As a clinician, what are your duties to Amy and her family, and how are they affected by patient confidentiality requirements? With increased use of personalized genomic medicine (PGM)—individualized care that incorporates patients ’ genetic profiles for treatment and diagnosis purposes— scenarios like the one described will be more common [1]. Using genetics to diagnose and treat medical conditions raises significant privacy and genetic discrimination concerns because diagnoses of gene-related health conditions may have implications for those related to the patient. The law, however, has bee