TABLE 10.

“How important would it be to you to find out what researchers learned about the role of genes in [original condition] in general, even if you did not get your individual genetic research results?”

Response	Theme	Examples
Important	Outcome of contribution	I would like that. That would be very interesting. It would be nice, if I participate in a study and a paper is written, to get the paper even though I wouldn’t understand probably the abstract, but I could look through it and see that I feel that I’ve made a contribution. Whether mine actually helped or not I can at least think it did. (Biobank-C10) It’s important to know what they’re doing, why they’re doing it. They’re not just coming around and giving you a test and saying, “Okay, filled out, see you later.” No, you’d like to know that your time and effort is getting some kind of results. (Epilepsy-D06) I mean I’m curious, “Has this helped anybody? Have they found any great answers? Are they coming up with new methods?” (Diabetes-S08)
	Stay updated	It’s important to me. I find the research interesting and obviously we have a personal interest in it, but even if the information wasn’t something that was going to be directly applicable to my family or something, I think it’s helpful to know. I want to know as much as I can. (Autism, SAGE-S24)
	Provide information to family	Even if I don’t know for a fact it’s for me, it would allow me to know that a possibility is there that it could be hereditary. And that it could still be something I could look for in my kids. (Epilepsy-D29)
	Answers	It would be very important. I mean I think it would make me understand exactly how my daughter got it. (Diabetes-S03)