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. Author manuscript; available in PMC: 2013 Aug 6.
Published in final edited form as: J Cancer Educ. 2012 Mar;27(1):91–99. doi: 10.1007/s13187-011-0275-2

Table 2.

Representative responses grouped by thematic and topical categories

Theme/topic Illustrative quotes
Barriers
 Fear of needles
“I think like, as far as like the blood … if they ask me right when I’m giving it, and it’s not going to
endanger me, I don’t care. But, if they are going to poke me again, I don’t know about that.” (18–29-year
female; mixed race, mixed gender group)
“Or ‘needle friendly.’ It just, you know, you think of what type of specimen do they need? If it’s blood, if it’s
needles, if you need to cut something out, you know.” (30–54-year female, mixed race; mixed gender group)
“It conjures up images of giving blood, and not all of us are needle worthy.” (55+-year female; mixed race,
mixed gender group)
 Privacy concerns “I wonder about the security of the actual physical storage place. I don’t want people breaking in the
place.” (18–29-year male; mixed race, mixed gender group)
 Lack of information In reference to informed consent protocols, “It doesn’t matter. Like, if you want to be really specific and
you want to tell me, then that’s fine. But I don’t really need to know.” (18–29-year male; African
American, mixed gender group)
 Mistrust of researchers “They ask me for samples then, and they explain everything to me. And then, let’s say that I go to another,
like another hospital or somewhere else, and I happen to know that they sell their, you know, their
samples for a ridiculous price to other people. I think it matters on the situation. Or whether they want,
like, two tubes of blood to like a whole pint of blood. Like you were saying, we want to know pros and
cons for every situation.” (18–29-year female; mixed race, mixed gender group)
 Generational or religious factors “Me, personally, I had looked into like um, a donation because I think it would be a beneficial thing for a
family or something, and my mom was against me going for it. And to her, you know, it’s kind of like a
cultural religious shock, but I didn’t personally have that kind of, um, that personal view. Yeah, it didn’t
really like factor into my thought process behind making that decision. But for her it did. I think it kind
of just depends on how you perceive, know where your donation is going and what benefit it will have.”
(18–29-year female; African American, mixed gender group)
 Lack of cash remuneration “You know, like oh, well, this person you gave her the donation, but we are charging them $3,000, $4,000,
X amount of dollars so that they can have it, and I wouldn’t really want to agree with that.” (18–29-year
female; mixed race, mixed gender group)
Benefits
 Family history as motivator
“My sister just died from cancer … I’d give up a finger right now if it would help.”
“I have had members of my family die of cancer, and so anything I can do to be of assistance as far as
education and research.” (18–29-year female; African American, mixed gender group)
 Convenience “It’s already out; they’ll throw it out anyway.” (18–29-year; mixed race, mixed gender)
 Immediate benefits to someone else “I will give you anything you want—blood, whatever you want—if you find a cure.” (30–54-year male;
mixed race, mixed gender group)
 Helping science or society “So for all those millions out there that got all those children, they are sitting there watching them die…
that purpose ALONE would make me, because THEY DESERVE a fair chance, just for the children.”
(30–54-year female; mixed race, mixed gender group)
 Positive relationships with a
  healthcare provider
“As long as the doctors performing it give you an explanation why, and what it’s going to do, how it’s
going to be a benefit to maybe yourself or another individual, then I’d have no problem.” (55+-year
male; mixed race, mixed gender group)
Message content
 Informed consent information
“In the consent form that I sign saying hey yeah, I give you authorization to do this, it should be stated
maybe in the consent form that do you give us permission to test for other things in the future with this
current sample.” (30–54-year male; mixed race, mixed gender group)
“I might question though—even if I do have an informed consent and I do agree to it, and my specimens
are used somewhere else—I have no way to, I maybe will have no way to track how my samples were
being used. And so this contract—this legal contract—doesn’t really mean anything because I have no
way to track how it’s being used anyhow.” (18–29-year female; mixed race, mixed gender group)