TABLE 2.

Selected comments of women with a sister or mother who attended genetic counseling

Participant	Participants’ perceptions of test result as shared by family member	Participants’ personal interpretation of test result	Participants’ descriptions of how information was shared by counselee
51-Year-old sister of counselee (HR S 12923) Lifetime risk 25.2 5-Year risk 3.8 Family history Sister breast 30s—died 30s Sister breast 50s—died 60s Paternal aunt breast 80s—died 90s Maternal aunt breast 70s—died 80s Nephew non-Hodgkin’s lymphoma teens—died 20s Nephew bone 30s—died 40s Niece cancerous brain tumor 20s—died 40s Reported amount information shared 3/5 No summary letter shared	Negative not genetic Oh, do you know what and, sorry [crying?] … um, do you know what, it was very traumatic when she was first diagnosed, just because our previous sister had had cancer and, and had passed away. But … after the initial stuff, and she had her genetic tests, and then she was very relieved, we were all very relieved when it came back negative, that it wasn’t genetic, and um, yeah, and do you know what? She’s gone through the treatment and done beautifully and, is back to her normal self	Not increased risk Um, and, I, all I know is that it’s, that there’s not a, that the cancers were not genetically, it’s not in our genetics	Family told together at lunch Do you know what? She just told us. We um, at that time we were getting together for lunch every week, just as sisters, and she just told us at lunch that she had gotten the results of her test and, do you know what? … She really didn’t go into lots of details about what it means, but just that, it meant that our risk wasn’t increased for that
54-Year-old sister of counselee (HR S 12899) Lifetime risk 22.7 5-Year risk 4.6 Family history Sister breast 30s/leukemia 30s—died 30s Sister breast 50s—died 50s Maternal grandmother gastric 60s—died 60s Reported amount information shared 2/5 No summary letter shared	Negative—not genetic …my first sister was diagnosed and then my second sister was diagnosed and she’s younger than me and then I got really worried, but she went right to genetic counseling and they told her whatever kind she has is not the genetic, it’s not inherited, or I’m not sure what the … yeah	Not increased risk So it’s not really making me at any more risk, I feel	Phone call And so then she just called me as soon as she was through and said, “It’s not. You don’t need to worry about this,” you know. So she put my mind at ease
45-Year-old sister of counselee (S 12809) Lifetime risk 11.1 5-Year risk 11.6 Family history Sister breast 40s—died 60s Mother ovarian 40s—died 80s Paternal aunt lung 70s—died 70s Maternal cousin breast 30s—died 30s Maternal cousin breast 50s—died 60s Maternal cousin breast 30s—died 30s Reported amount information shared 1/5 No summary letter shared	Negative And, um, and she said yes and that it came back negative	Decreased risk WHAT’S YOUR UNDERSTANDING OF WHAT THAT MEANS FOR YOU AND YOUR RISK? Um, I, I guess, I would think that my risk is somewhat lower	Prompted to ask because of study—asked through Facebook YOU MENTIONED EARLIER THAT SHE DIDN’T SHARE A LOT WITH YOU UNTIL YOU ASKED HER ABOUT IT. CAN YOU TELL ME ABOUT THAT? Um, I didn’t even know that she’d had it, um, until basically this research study came and on the front, it said something to the effect that I’d been identified as someone who—how did it word it?—um, related to someone who’d had genetic counseling. And so when, uh, I was trying to remember my, my sister’s youngest daughter’s age, I just messaged her on Facebook and asked her, um, you know, her age and also asked her if she had had genetic counseling because I didn’t know. She’d never mentioned it before
42-Year-old daughter of counselee (D 12890) Lifetime risk 11.6 5-Year risk 1.9 Family history Mother breast 40s, 60s—died 60s Maternal grandma breast 50s—died 90s Maternal grandfather prostate 70s—died 90s Paternal grandma breast 40s—died 90s Father liver 60s—died 60’s Maternal cousin thyroid 40’s—died 40’s Reported amount information shared 4/5 No summary letter shared	Negative—for specific gene I know, yeah, I know very little about it. All she told me is that she tested negative for BRCA 1 and 2	Feels literal interpretation is no increased risk, but emotional interpretation is an increased risk Um, while there’s a lot I don’t understand, I suppose it would mean that … I mean on one hand I take it as I don’t have a higher risk than any other average person… But I just have a hard time believe that with both my grandmothers and my mom having had breast cancer, so. In my mind, I feel like I’m very high risk, even without that test… Even though my mother is negative, there still seems to be a family trait of it… So I don’t feel like her testing negative, um, that does, that just doesn’t, that makes me feel a little safer, but not a lot safer. (laughs)…	Verbal sharing …she told me
43-Year-old daughter of counselee (HR D 12829) Lifetime risk 28.7 5-Year risk 1.4 Family history Mother breast 40s—died 60s Maternal aunt breast 40s—died 60s Maternal aunt breast 40s and 50s—died 60s Reported amount information shared 0/5 No summary letter shared	Results not known—no recollection of test results shared She did- she really didn’t share anything with me… Yeah, I think I just had forgotten and I, uh, I didn’t, you know what, that’s amazing. I, I’ve gotta ask my mother what, what she learned in that. I, she may have shared it with me and I may have just forgotten … Or she may not have shared it, I just can’t, I can’t believe I can’t remember that. I should, I should remember that but I just don’t	Did not recall test result	Informed name was added to potential participant list for study. OK? SO HOW’D YOU EVEN BECOME AWARE THAT SHE HAD HAD, UM, GENETIC COUNSELING? She told me she had and then she said that she, um, had written my name down as someone who would be interested in participating in a test and I said yes, absolutely, I would do that… So that’s, and, but that is all my mom told me
64-Year-old sister of counselee (S 12936) Lifetime risk 9.3 5-Year risk 7 Family history Sister breast 30s—died 50s Mother breast 70s—died 80s Maternal aunt ovarian 30s—died 30s Maternal aunt cervical 40s—died 40s Paternal grandma cervical 40s, gastric 40s—died 40s Reported amount information shared 5/5 Summary letter shared	Negative She did not have the mutation. And that’s what I’m finding out again as I look at this [the summary letter]	Interpretation is consistent with definition indeterminate test result …And I, I knew when I got it [the summary letter] from her, that, you know, I read it, and I wasn’t that concerned after seeing it, although I know that this is not the only thing that shows whether you kind of have a risk for breast cancer. …Well, I think, I think it was a small relief, but in reading the materials that went with it… It did also say that that’s only one part. That there’s still, um, a, somewhat of a heredity factor … or … risk. M-HM Because family members do have cancer, and there’s just that susceptibility there… The way I understood it	Family gathering We, we do sort of have a Family reunion maybe once a year? … But I can’t remember this particular subject coming up that often. Except I think she did pass these, uh, things [summary letters] out at one of those, uh, times when we were all together … But, but discussing it, probably didn’t happen for more than 10 or 15 minutes… And, um, and since it did come back that, uh, it, there was no mutation. I think, probably, there wasn’t, you know, that kind of, in the discussion that there wasn’t that much to talk about
44-Year-old sister of counselee (HR S 12749) Lifetime risk 33.6 5-Year risk 2.7 Family history Sister breast 30s—died 40s Mother breast 40s—died 60s Reported amount information shared 4/5 No summary letter shared	Positive Oh, there were multiple genes I thought they were testing for and it seems like we were part, she was positive for one	Increases risk for family I just know it puts us in a higher risk factor and definitely her daughter…	Family discussion Oh, we just get together as sisters every once in a while M-HM? Just talk, and so that’s how she just educated us, told us, followed up on it, and told us

Note: Statements in all caps were spoken by the interviewers.