Table 3.

Patient Perspectives on the Health System Sharing a Lynch Syndrome Diagnosis From the Perspective of a Patient With Lynch Syndrome and of a Relative

Interview prompt: If you were confirmed to have Lynch syndrome but were deceased before being able to inform family members, would you want your health system to inform them of the possible hereditary risk? Why or why not?
Key findings	Example quotes
22 of 23 participants endorsed that the health system should share their own personal Lynch syndrome diagnosis with relatives.	“Share away. Who cares, I’m dead. It doesn’t matter.” “For me it’s a no brainer to tell my family.” “My personal view is that if doctors are aware of this particular syndrome, whether I’m alive or not should not affect them that they pass the information on, at least to my wife or to my next of kin so that they can share it with whoever they think appropriate.”
1 of 23 participants agreed in general that sharing this information is important but had concerns about privacy issues, particularly around it being a “slippery slope” in sharing private information.	“But where does it stop, right? So today it’s the hospitals, the government, the insurance companies, whoever have the right to tell and then the obligation to tell the children about Lynch syndrome. Tomorrow, what else will they want to tell the children that maybe I wouldn’t agree with? ... It’s an ethical dilemma, and by the same token, it’s a slippery slope.”
Interview prompt: If a blood relative, such as a sibling, was confirmed to have Lynch syndrome but became deceased before being able to share with you and other family members, would you want the health system to inform you of this possible hereditary risk? Why or why not?
Key findings	Example quotes
22 of 23 participants noted that the health system should share the Lynch syndrome diagnosis so that family members would learn their own potential risk.	“I think it is our right to know. And then that would be our decision [to take action]. But we should be advised whether we are at risk or we are not.” “Of course, I would want to know that, and I would be mad that I didn’t know it!” “Yes – being adopted like I am, and knowing no medical history in the family, I think all medical history should be available to the family, period”
1 of 23 participants agreed in general that sharing the information is important but worried about patient privacy and potential insurance or employment issues of the relatives.	“Not because of the Lynch syndrome but because of what the next step and the next step and the next step are… I don’t think they [health system] should do it, I don’t want to tell them how to do it. I guess my big concerns with something like that is twofold – is telling insurance companies if we ever got into a climate where you could raise rates on somebody who was more likely to get sick. So that would be the first concern that I would have. The second concern that I would have would be employers … so the company I work for … has a company-funded health care program. So if they know that I’m likely to have cancer, is that going to color their actions whether it be for hiring or if there’s layoffs, who goes?”