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. 2022 Oct 18;9(4):282–289. doi: 10.17294/2330-0698.1945

Table 4.

Expressed Benefits and Concerns About Health Systems Sharing Lynch Syndrome Diagnosis Information Following a Patient’s Death (may have endorsed more than 1 benefit or concern)

BENEFITS
Key findings Example quotes
Family members have a “right to know” (n=12)
Important health information and potential cancer prevention (n=9)
Information is knowledge (n=6)		 “For my descendants that could be affected by this, if they were prevented from getting the preventative screenings that could possibly save their life and they didn’t get it because of that privacy thing, that would be wrong. That would be simply wrong.”
“Essentially that person has died. And so the risk is for all the survivors and not for the dead. So, if that information can help ease the pain, or ease the worry or eliminate the risk, I’m not sure we should avoid that responsibility, you know.”
“Give them [family] as much information as possible so that they can decide what to do next.”
CONCERNS
Key findings Example quotes
No concerns (n=9) “I personally have no barriers or concerns … [family members] should know and if they want to ignore the situation, then that’s totally in their court.”
Concerns (n=14) regarding:

  • ○ Privacy and privacy laws (n=8)

  • ○ May create anxiety or upset family members (n=5)

  • ○ No contact information or information not up to date (n=3)

  • ○ Increase family members’ insurance rates (n=2)

  • ○ Family members not on speaking terms (n=1)

 “The law would have to be changed where, if somebody has had a genetic mutation, they can have the immediate family know about it or be aware of it. But I guess the laws would have to change first. I know they’re not going to risk being sued and everything for release of information they can’t release.”
“It could be a scary thing sometimes for someone that you might send it to. I mean, are they emotionally capable of handling it? It might be pretty hard to know.”
“The health care provider, or whoever diagnosed this, is not going to contact a family member if they don’t know where to contact them.”
I guess the other dilemma is if like their insurer found out – it’s possible they could raise their insurance rates or something like that.”