Table 3.

Interview Quotes from CHARM Participants

Themes	Quotes
Motivations
Personal and family health	“I guess just to see whether I have a genetic risk for cancer. And if that kind of-- well, if there is a genetic risk, then I would like to be able to share that with my family, my other family members so that they can also get tested and see.” “Now my grandmother died of cancer, so I’m like, “Do I have cancer too?” I want to know because I just had a baby. I don’t want to leave my baby alone early. If I do have that gene, I want to make sure I do everything to detect it early.” “Because my family-- I thought about the fact that no one in my family gets tested, so many people in my family die of some kind of pain, or have died due to some unknown ache or pain where no one knows what happened. I think it could have been some type of cancer, or I don’t know. So part of it was just as a preventive for my family.”
Altruism and desire to contribute to research	“I work in the medical field, so anything to help contribute to whatever, I’m totally open to. So I was very interested when I got the email and was open to do it.” “If there’s something that can make the system better and easier for other people, including myself, then why not.”
Curiosity and interest	“I’m really interested in DNA, and genealogy, and stuff like that, so I thought it would be-- aside from random blood, like CBCs and stuff, it can tell you on a deeper level what your genome says.” “I’m applying to study epidemiology next year so I was overall interested in that in general.”
Trust and role of doctor or institution	“I’m glad that my doctor was able to find the information [about the study] and was able to tell me about it because I’m not sure if I would’ve been able to-- not necessarily I wouldn’t necessarily never found it on my own, but I’m not sure if I would’ve ever thought about it.” “It’s important since I trust [my healthcare system]. They’re my providers, well, I consider them having my best interests. So since the representative was from [my healthcare system], well, I imagine that she’s someone trustworthy, responsible and all that” “I saw the institutions that were participating, so they all have fairly good reputations when it comes to protecting data. I wasn’t aware of any too major breaches, so that’s what led me to participate.”
Convenience and affordability	“She told me that that form that I was going to complete was free. Because I said, ‘The thing is that I don’t have any money. I don’t have a job. I don’t have the resources to pay for that bill’.” “Because I’m almost always working. I never have a fixed schedule or anything. So when I had the chance, I read it. I mean, they told me people could take the time to do it over the phone or tell the doctor. Right now, everything seems good, but for me the option they gave me was very good.” “So it didn’t seem to be like it was going to be a ton of time. And it was either I can do it at my next appointment, or you guys could send out the kit to me, so it was relatively easy… It was just easy.” “I mean, the gift cards are a nice perk.”
Improving representation of underrepresented groups	“I was thinking about what populations might be represented in the study and who might be underrepresented and how that might be helpful for me to participate as having multiple underrepresented statuses.” “[I]t seemed to me very important. Any study is important for our community. Right? For the Latinos, to learn more, because Latinos come from countries that are, well, less developed than the United States, the majority. So, this country, well, gives more information.” “It’s like a big reason why I want to do it to see what this process is like for me so that I can kind of share this experience with other people in the foster care community in [the state].”
Concerns
Information access and use	“I guess the only thing that might make me a little uncomfortable is having my information out there for everybody and anybody. But that’s just what you face these days. Whether you sign up for a study or you sign up with Facebook, everything about you is everywhere, so it might as well be for a good cause, right?” “I guess you could say that we know that preexisting conditions, at the moment, can’t be held against you and I think it’s just better to know what might be a possibility than not do it because you think some entity will have information about your preexisting condition. So I think that that outweighs the concern in my opinion.” “Right, it didn’t worry me… It seems fine, since it’s medical and not governmental.” “Several [doctors or researchers] were going to share the results and talk about my case… I imagine that as long as there are more opinions, it’s better.”
Privacy protections	“I suppose that the main concern would be that that information could fall into the hands of… people that want to sell it to other folks that want to use it to somehow harm [others]… I think that if the privacy protections weren’t robust-- so, basically, to my understanding, if it weren’t robust for me, I would not have participated.” “No. Because it said that they were going to share the results, but without identifying people. And if it’s a study and it’s free, well, it doesn’t matter [laughter].”