Table 2 Themes and corresponding illustrative quotes.

Well it was funny cause through the questionnaire I felt like I was kind of thinking about things, different things at different points in the questionnaire, whereas, you know, like…. You know, I was kind of like, oh maybe I’d want to know that but at another point I was like, yes, that’s, in this moment I would want to know this, you know…. Yeah, so I mean I think there was, there were some of them that I was kind of undecided about.

-INTV13

Patient: The examples (recessive diseases) don’t look as if, don’t look as serious as other ones. Could the, could the diseases you get be very serious for your children? (~45:00)

Genetic counselor explains inheritance patterns.

Patient: Oh, alright. Alright. Then I’ll change my answer to yes.

-CTRL06

I guess when there isn’t much that can be done knowing about, you know, certain conditions or, cures obviously, there isn’t any, perhaps medication that can sort of slow down or lessen the symptoms of whatever the, you know, the condition may be. I guess I kinda, I know it mentioned about, you know, just sort of, sort of planning ahead and being, I guess, ready for something like that.

-INTV01

That’s a tough one. Um, I’m gonna go, still, yes. Yeah. (Mendelian diseases)

-CTRL23

Probably not much about the, the, genetic predisposition for my children because all of them are grown up…. So, but all the others are, especially the Alzheimer’s and for cancer.

-INTV07

This one I don’t know. I thought about that. (Early-onset brain diseases)

-CTRL15

My general understanding, I think, prior to going through the aid, was fairly accurate but I did learn a couple of things that were clarified by the aid.

-INTV03

So, this is, these carrier risks you’re talking about only the recessive, not dominant?

-CTRL30

Each category does sort of prompt a different response.

-INTV19

It’s never too bad to learn something new, too…so, sure.

-CTRL16

But obviously preparing (for) instance of, OK, insurance, you know, savings…. I would like to know, because I want to know what, how should I monitor prepare for this (diseases)[…]. Making, arrangements in terms of insurance, saving more.

-INTV15

I would think, well first of all it would be devastating to know that.

-CTRL12

The one I was unsure of was is if I would want to know if um if I was a carrier.… I would need a bit more deliberation on that.

-INTV11

But if there were nothing, like, if there were nothing I could do? […] And it wouldn’t impact me at all…. Then no. Like… If it’s something like Alzheimer’s, there is no treatment anyway. Knowing earlier makes no difference. There’s no screening and prevention.

-CTRL21

Knowledge is power, knowledge always helps.

-INTV03

I mean, if there are no interventions at all, like…. Mm hmm…. I can’t see the value in it.

-CTRL30

I like information, whether there’s not a, you know, there’s not a lot of research around it or there’s still changes happening, I like to know things like, I like certainty, where it’s available, I like to know, just what I’m up against and what, you know, you may not get the disease but if I’m at higher risk, I’d like to know that.

-INTV21

I guess what interested me that most was um ah number 4 (Early-onset brain diseases).… Why, I don’t know, because of the brain. I’d like to know more about that.

-CTRL17

I’m not someone, again, who would be predisposed to, you know, worrying about this, that, or the other thing.

-INTV03

I already know what my parents have, and, so, I’d just assume that I have a higher risk for those things, and I don’t, and I, no, I wouldn’t want to know definitely that I had a higher risk for it, so, I would say no for two (polygenic risks).

-CTRL06

The other one was the Alzheimer’s, when I read the, going through the video and, that one, it just kind of hit a nerve and I said yes, I’d like to, I must have that one because I have a cousin that I grew up, when we were young and we were very, very close … she has advanced Alzheimer’s…so when I saw that and the example of course, was Alzheimer’s, I would like to know.

-INTV16

I have kids already, and I know it would be scary, but I would like to, I’m glad to know that parents would be able to see whether, you know, they’re carrying diseases or stuff that, you know, could affect their children…and I would want to know.

-CTRL31

But I also feel like, for me, a genetic test result isn’t going to tell me immediately if something’s going to change, it’s just going to help me plan.

-INTV17

I had endometrial cancer…so I was tested for the Lynch syndrome…. Cause I already had (the) disease (I) might have a higher risk for colon cancer.

-CTRL30

Yeah, yeah, so it’s not just medical plans or medical interventions, also with regard to you (know), retirement plans and all of that.

-INTV07

So, having that experience totally, like, freaked me out. I can tell you. Like, that’s why this whole testing is really real for me, because I have, I have, was given those options…. So, to me, I could totally put myself in the shoe, like, if I were offered all these things, you know what, after what I went through.

-CTRL18

Like I’m 70 now, I’m thinking of selling my house and moving…. So but I’m doing that without any real information except sort of a little bird told me I should do it…sometimes people, we need a little bark to help us make these decision.

-INTV12

Well I guess I’d say yes simply because it might help somebody else, right? Well then you would encourage your family members to be tested.

-CTRL12

But obviously preparing instance of, OK, insurance, you know, savings…I would like to know, because I want to know what, how should I monitor prepare for this (diseases) […] Making, arrangements in terms of insurance, saving more.

-INTV15

I don’t have children so I wouldn’t want to know about 4 and 5 (Early-onset brain diseases and carrier risks). Because I’m childless it’s not, it really isn’t that relevant to me, given my age.

-CTRL13

I’m worried about the ramifications that it could have on my sons’ future. I’m worried about how it could affect my sons and their position in what they’re, how am I going to say this without, OK, in the current jobs that they actually have, and how it could potentially affect them, insurance-wise, career-wise.

-INTV16

And, and, for my children, as well. I mean, I would give them the option of being tested, or whatever, but, they would be aware of what I have, and what mine is, and then that’s, they’re free to do whatever.

-CTRL28

I feel confident about them now; but I think the choices I made could still change, you know, like in a year or two years, or ten years, even… for me, if it’s not completely known then I don’t know, it’s sort of grey or even just, areas that we don’t know anything about, from what I understand, and so, my reckoning is that in ten years, that will look completely different, and at that point, I might want to totally opt in.

-INTV14

I already did that. I already, I already had the breast cancer gene test, and it came back negative, so, I know I would do it, because I already did.

-CTRL06