Table 2 Participants’ perceived benefits of participating in GeneScreen
From: Age and perceived risks and benefits of preventive genomic screening
Benefit | Representative quote (age of respondent) |
|---|---|
Prevention and treatment | The benefits for me are I can find out if I have one of these risk factors and hopefully work to prevent that disease. (28) |
If it hadn’t been the case that there was something that could be done for each of these [11] conditions, I wouldn’t have been as interested. I don’t want to walk around knowing something is wrong with me that I can’t do anything about. (50) | |
I mean, if a truck is gonna hit me, I’d rather know. I’d rather have somebody yell at me “Get out of the way!” (65) | |
Having information and peace of mind | It’s peace of mind knowing that genetically I don’t have to worry about X, Y, and Z. (27) |
Interviewer: “So what made you decide to go ahead and join despite your reservations?” Respondent: “Hmm. I guess cause I think knowledge is key. So knowing is better…” (48) | |
Interviewer: “What do you hope to get out of participating in the GeneScreen study?” Respondent: “Knowledge…. Peace of mind hopefully.” (76) | |
Pass information to family members | I’m a mom. So if I have a chance that I’ve passed anything on…I absolutely want to know. (23) |
If you have something, you’ll be more informed to help your children, your siblings, that sort of thing. I just think it’s a wonderful thing to relay that information. (59) | |
If there’s something that I could do to give [my grandchildren] the potential information on future vulnerabilities that they or their offspring might have, I think that’s a nice gift that I can give to them. (80) | |
Advance science/research | I believe firmly in the importance of research, and I believe firmly that information is important to gather, and that in order to gather that information you require the participation of people. (27) |
The more research we can get done…the better we can treat people and heal them. So that’s why [I joined]. (44) | |
I’m a believer in science. I’m a believer in the more knowledge, the better. (72) | |
Helping others | You can help other people by doing the study, and I mean that’s important within itself. (26) |
If anyone can benefit from my information that I am contributing, I think it would be a wonderful thing. (59) | |
I’m just happy to do a little bit that might help somebody in the future without truly any particular inconvenience to myself. (68) |
