Table 3 Participants’ perceived risks of participating in GeneScreen
From: Age and perceived risks and benefits of preventive genomic screening
Risk | Representative quote (age of respondent) |
|---|---|
Discrimination | People [can use this] for billing or insurance purposes to say that “Oh. You know he’s got a preexisting condition.” So it would be hard to find health insurance or find premiums that people can live with. So that’s my biggest fear, and I kind of fear that more than the actual [positive] results that could come out of it cause like if you can’t find health care and get yourself treated, then what’s the point of doing the test? (34) |
If it gets compromised or you know hacked into and exposed, or if at some point you know I did have to go out and find insurance on a marketplace. You know hopefully it wouldn’t be an issue, but I suppose they could always find—a health insurance company could find another reason to deny. (48) | |
That file will be in my permanent record…I felt a little twinge possibly know[ing] that [it could] affect insurance coverage in any way. (61) | |
Worrying | There’s a chance I could find out you know I do have a gene mutation that I otherwise would not you know have known about until something went wrong. So I mean I think it gives people of course a little bit of anxiety until they receive their results. (23) |
I am still a little concerned of if you know what the result is and how I will react to it and what—you know how it’ll affect my daily and future thoughts and worries and all that kinda stuff. (48) | |
[My friends] said “Do you really want to know?” I mean, regardless. You know one of the things that I’ve been aware of by reading some articles is that sometimes what happens when you—like the old thing about if you gave everybody a full-body MRI, you’d find something to work on, and I think that concerned me. I really don’t want to poke around so much that I—I want to make a value judgment, and I don’t want to, like, have somebody scare me half to death. (74) |
