Table 2.

Participant Perspectives on the Health System’s Role in Sharing Lynch Syndrome Diagnosis Information With Relatives Following the Death of a Patient

Interview prompt: Because family members of an individual with Lynch syndrome are at risk and can benefit from early prevention and screening options, we’d like your thoughts on a sensitive topic about what to do if the person confirmed with Lynch syndrome has died and their family members have not been told about the possibility that they may also have Lynch syndrome. This is a challenging question because federal laws and regulations protect the privacy of a person’s health information, even after that person has died. Yet others believe that health information like this should be shared if it could benefit others, including relatives. We’ve been talking [earlier in interview] about the value in learning about Lynch syndrome in terms of the knowledge for yourself and for your relatives. But there are ongoing questions about whether a health system should protect a person’s privacy and health information after death versus the responsibility to tell that person’s family members about the Lynch syndrome diagnosis since it can impact their health. Based on what I just explained, what is your reaction to this challenge and the information I just shared?
Key findings	Example quotes
Most participants (19 of 23) had the initial reaction that family should be informed, and it is OK to share the Lynch syndrome diagnosis with family members after a patient’s death. After their initial reaction, some (4 of 19) believed that the family should be informed, reflecting that the situation is complicated and that although it is important to inform the family, they also see concerns about patient privacy.	“I know that there are all these privacy issues, but if the person passes away and there is [sic] family members that should know that they may be at risk, I think after the passing away that the family members should be informed.” “I just believe that the doctor/patient privilege should be waived in situations like that.” “I think that information should be made available to the family so they could keep an eye on it [cancer] so it doesn’t get anybody else in the family.” “It’s a hard thing. … You want them to have the best options moving forward. But it’s also a privacy thing.”
4 of 23 participants did not clearly endorse informing the family in their initial reaction because they felt like they could “see it both ways” regarding sharing the result with family members versus patient privacy.	“It’s not hurting the person who died. And that information would almost certainly benefit any of their survivors. … But I don’t know. It’s a tough call. You want to respect peoples’ privacy and things like that.”