Table 2.
Main qualitative themes and representative quotes related to perceived benefits for each model of consent
| Consent Model | Qualitative Theme | Representative Quote |
|---|---|---|
| Notice | Provides many samples | “The more samples you have, the more possibilities you’ll have. You need different ethnic samples anyway. You know I think that’s totally fine.” P19,Black, did not participate in WHR biobank |
| Better use of researcher time and funds | “Instead of going and looking for someone, they already have a sample there.” P1, Black, participated in WHR biobank | |
| Notified that sample will be used in future | “At least they’re informing you rather than not informing you at all which I’m sure in the past there were situations where people weren’t informed.” P31, White, participated in WHR biobank | |
| Opt-out | Researchers have a large number of samples | “I could see where it would … probably gain researchers a lot more samples and be a lot quicker—to gain a big bank of—of samples.” P55, White, did not participate in WHR biobank |
| Having control over whether or not sample is used | “It gives me the option. And the choice of how much further I want to go into participating.” P14, Black, did not participate in WHR biobank | |
| Feeling respected | “It’s a little bit more respectful… rather than just saying, too bad, so sad, we’re doing it… it’s saying you know we appreciate the fact that you may not want this. And we’re going to let you say no.” P6, White, participated in WHR biobank | |
| Broad | Having control over whether or not their samples are used | “I like that you have a choice at the time of them taking the sample, to say yes or no.” P49, White, participated in WHR biobank |
| Only giving permission once | “Anytime you give a person permission to do something as a one time and everything, you shouldn’t have to be contacted by this person over and over again about the same thing so. You know once it’s done, it’s done.” P23, Black, did not participate in WHR biobank | |
| Being asked for permission | “That would be the one thing, I guess that would be a plus to it, at least they…are asking.” P56, White, did not participate in WHR biobank | |
| Study-specific | Controlling sample or making an active choice to participate | You have the—the choice. You're not robbed of a choice. You're given that choice. Some people, that means a lot.” P47,Black, participated in WHR biobank |
| Being informed | “[Study-specific]’s the one I’m most comfortable with because you’re given more information. You know the time in between when you initially gave consent and the next time they wanna use it…a lot of time could’ve lapsed or no time; you could have changed your mind and so I just think you oughta have the option. And that you oughta be informed about what they’re using it for.” P25, Black, participated in WHR biobank | |
| Being asked for permission | “It is good because you don’t want nobody to just take your sample and do what they want to do; it’s more appropriate for you to ask.” P31, White, participated in WHR biobank |