TABLE 6.
Storage and Retrieval of Results
| Participant Response | |
|---|---|
| Trust in the medical system for storage of genomic data | “That can be flagged then when something’s found out about it, you know. And it’s like, ‘Oh, hey, when we had your baby tested 5 years ago we weren't really sure but now we have this new research and it’s saying X, Y, Z. We’d like to get you back in or we’re looking into this’ or something.” (Nicole, AMC). |
| “You know, in case anything comes up. Say—I mean, 'cause all kinds of things can happen. Like say your child is epileptic and seizes, and goes into some kind of coma and they don’t know why, okay? Well, let’s go to the genetic records and go see if that child is at risk for epilepsy….”(Aliza, PH-English) | |
| Concerns about medical system storage of genomic data | “I think we’re transitioning in the medical records, where the doctors actually talk to each other. I think we’re getting there but we’re not there yet, so I wouldn't trust that if it went to the pediatrician, that that would get passed on to their next doctor if we moved or something.” (David, PID) |
| “I think especially in the beginning it would be really hard for me to trust any sort of storage or security system, and it’s not my information. You know what I mean? Like that’s my baby’s information… It would just be hard for me to put that out there and not know—I mean, especially like for me, I think about just like my own health history and things that I don’t qualify for because there’s a chance of this or that. And I don’t want to put that information out there and take a risk that that could happen to my baby.” (Milly, AMC) | |
| “So having the results…available to view by both me and the doctor, I think that would be good. If it is raw genome data, then I definitely don’t want it posted anywhere.” (Rajam, AMC) | |
| “It’s like the information, once it’s out there, it’s out there. But policies, legislation, you know, leadership changes over time and I feel like that’s where it becomes really kind of—there’s like this gray area where it’s like, you know, you really can’t get these guarantees about it.” (Adelle, AMC) |