TABLE 4.

TABLE 4A. Logistical Issues

“I can only imagine if they had to give information to everybody that participated, that would be a lot of money and a lot of time.” (#1: White female, age 18–24, GED) “You’ll never know how many people are involved with that particular research. It just takes too much time trying to back-track and locate people that have been involved with the studies. People move. People pass away. It’s just too much.” (#4: Black female, age 25–34, Associate’s degree) “Well, I would love to find out, but I understand that it would add tremendously to the cost of the research to notify everybody. Plus, we’re supposed to be confidential, so how can we be confidential if we’re receiving reports regularly. It would be kind of a lot. I just think … I wouldn’t want the research to be that expensive. Then the drugs are going to be that much more expensive. It’s a nice idea, but practically it probably wouldn’t work out to have reports, to find out. ” (#22: White female, age 45–54, master’s degree) “Well, it would be nice to hear from it, but I guess they don’t have the time to inform everybody. ” (#26: White female, age 55+, high school graduate)

TABLE 4B. Whom to Contact With Results
Physician–Physician-patient relationship: “Probably I’d like them to contact my physician first because the physician would know … it’s somebody you’re more familiar with. They’re going to have the time to sit there and chat with you about it rather than a researcher who’s got a deadline due in an hour or something.” (#18: White female, age 25–34, Bachelor’s degree) “First doctor, then patient because then the doctor would probably know how to go about assessing the problem related to the patient. I’m not the expert; the physician, they would need to know first.” (#29: Black female, age 35–44, some college but no degree) “I think [my doctor] should be. He knows my health. It might be something I’d hear and go screaming.” (#37: Native American female, age 55+, some college but no degree) “I know that sounds crazy, for them to not contact me but contact the doctor, but I would probably feel better with him getting the information to me because I’m more comfortable with him.” (#34: Black male, age 45–54, some college but no degree)
Physician—Information too technical: INTERVIEWER: And if they did contact you, would you want them to contact you or your doctor first? SUBJECT: Both. INTERVIEWER: Okay, so maybe have a discussion with you and the doctor at the same time? SUBJECT: Yes. There might be some terms when I would go, “What?” INTERVIEWER: And then the doctor can explain it? SUBJECT: Exactly. (#38: Male, undisclosed race, age 25–34, some college but no degree)
Participant: “It would be okay to contact me directly. Messages to doctors, I mean, I know that would be important and it would probably come through. But doctors’ offices can get a little hectic, and I think I’d rather get it straight from them than count on messages not getting lost in doctors’ offices.” (#22: White female, age 45–54, Master’s degree) “Me directly, because I might have changed doctors. Because it is my health. Doctors hardly have time now.” (#31: Female, “other” race, age 45–54, Master’s degree)