"Irresponsible Not to Share Such Important Information": A Narrative of Responsibility That Underpins Familial...

Patients diagnosed with familial hypercholesterolaemia (FH) are advised to disclose their diagnosis to at-risk relatives, as early knowledge of genetic risk allows relatives to manage their cholesterol levels. Debates in the bioethical literature regarding familial disclosure of genetic risk tend to revolve around rights: the right of the patient to autonomy and confidentiality, against the right of the family members to receive information that is clinically relevant or genetically shared. However, empirical studies found that patients' reasoning was frequently relational, suggesting a need to reexamine the values used in guidelines. This study aimed to examine patient values that affect the familial disclosure of familial hypercholesterolaemia. Twenty-one patients were interviewed. The results showed that patients' decisions were driven by two factors: beneficence and emotional proximity. As interview questions did not ask specifically about responsibility, it is noteworthy that various notions of obligations to others emerged unprompted. Patients perceived responsibilities based on the knowledge they held, and the nature of familial relationships; in particular, duties to vulnerable relatives. My results suggest that responsibilities, rather than rights, are a decisive moral issue that motivated patients' decisions.