TABLE 6.

“How would you feel if the reason researchers wanted to contact you about being in a new study was because of something they learned about your DNA in the first study?”

Response	Theme	Examples
Positive	Sign of scientific advancement	I think that’d be great … you would know that the other study worked. (CF-C16) That’s fine. I mean, DNA, that sounds like it could be moving, progressing somewhere. Yeah, that would be good. (Epilepsy-D06) I would be very happy about that. I mean I would say, “Yay, I’m helping make a difference finding something.” (Autism, SAGE-S23)
	Facilitate more research	It’s always good to learn new things about genetics and DNA. So I think it’d be great to learn new stuff and do more research based on what’s been learned. That’s the whole point of doing research. (CF-C17) Oh, I’m fine with that … if they found, let’s say, we have a predisposition to autism on gene chromosome number 8 or whatever, I’d be fine like if they took all the people they thought that had this … and did another study. I think that’s great. (Autism, AGRE-S02)
Positive, would want results	Would want to know what researchers had learned	If there was something they learned about my DNA, and they want to look into it further, I would understand the value of that. I would have no problems with that. I mean for obvious reasons I might be a little anxious if there was something that they found out. I would want to know what it is. (Biobank-C11) That would be fine, although I’d wanna know probably what they see that makes them want to look at my DNA. (Epilepsy-D05)
	Inform participation decision	I’d be willing if it’s something that was in my DNA the first time or genetics, it’s good for me to be informed of that and that’s why I would be willing to further the study. (Epilepsy-D17)
Positive, with some reservations	Advance notice	Being up front in the beginning is the key to it. If I agree to something ahead of time, I know they’re doing it. If I assume that I’m an anonymous donor, and then later on I find out I’m not, then I feel betrayed I guess is the right term for it. (Biobank-C10)
	Confidentiality	I guess it would depend on if they were a part of the study that they had learned that from. Like if they were just kind of a third party researcher and they learned it through like friends or like seeing the results or whatever it would be a little bit more worrisome for me. (Diabetes-S19)
	Nature of the information	I think I would feel totally fine with that—unless like the topics of the study or whatever they found was something alarming. (Biobank-C04)