Notice |
No active permission |
“I think people, um, really need to know that they’re making the choice. Not someone’s making the choice for them whether to donate samples or not.” P46,White, did not participate in WHR biobank
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Lack of control over samples |
“It should be my decision whether or not I want them to use it in the future.” P22, Black, did not participate in WHR biobank
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Not enough information |
“It seems a little vague like I said before. And I’m a person who wants to know a few more specifics.” P13, White, participated in WHR biobank
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Opt-Out |
Not giving active permission |
“Yeah, they need to say, do you mind if we do this or that; I think so. Instead of just assuming, saying yes.” P10, Black, participated in WHR biobank
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Not enough information |
“Well, I would like to know when my research is being used.” P39, Black, did not participate in WHR biobank
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Lack of trust |
“Because they're tellin' me that my samples may be used…they weren't asking me my permission….So I don't know what's really built in there, really, that would, safeguard me from them not using 'em.” P45, Black, did not participate in WHR biobank
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Broad |
Slowing down research if not enough people agree to participate |
“I think if you have too many who, um, don’t give permission, then you lessen your research opportunity, which could impact them in the future.” P60, White, did not participate in WHR biobank
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Wouldn’t know details of every future study before giving one-time permission |
“I would wanna know each time you wanna sample or whatever, I would like you to give—like, don't just tell me anything. Go into details 'bout it and how it's gonna work.” P41, Black, did not participate in WHR biobank
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Would not receive updates about research or be able to talk to researchers involved |
“After the year is over with. A letter coming from the researcher saying, you know, I want to thank you for, thank you for your donation…your samples allowed us to help further advance you know our studies and our research on cancer…Because then that gives people, it’s a good feeling.” P20, White, participated in WHR biobank
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Study-specific |
Being bothered by future contact |
“A lot of people may not want to be called each particular time. Because…it’d depend on how long that the research is going; that could be anywhere from days to years.” P17, Black, did not participate in WHR biobank
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Time consuming for participants and researchers |
“From the researcher’s perspective, I could see where that would be a lot more cumbersome, a lot more work and, um, maybe slow the research down. ‘Cuz it would be a lot more work to, where you just have a bank of everybody’s stuff, and you can just go get what you need, when you need it, as opposed to waiting to get permission from everybody to study.” P56, White, did not participate in WHR biobank
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Wasting time, effort, research money, etc. on recontacting participants |
“To me, it wastes time and energy of the researchers…. I think the biggest part is the time away from the actual research itself.” P4, White, participated in WHR biobank
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