Table 2.

Overview of reasons for non-participation in the Mayo Clinic Biobank, qualitative interview questions with refusers and non-responders

Theme	Subtheme	Illustrative quote
Too busy to participate	Not enough time to complete the study materials	“I just looked at it, and it was so thick, it was several pages, and I thought I just don’t have time for that now.” [Male, age 53 (non-responder)] “Well, I started to fill out the paperwork, I wanted to, but it was just way too much to fill out and I was really busy.” [Female, age 70 (non-responder)]
	Not a priority given life demands	“I had 11 different things going on at once. It wasn’t at the top of my list.” [Male, age 51 (non-responder)] “Just busy. Right now my life is planning a wedding and moving…Just chose not to do it. I had other things that were a priority for me.” [Female, age 27 (non-responder)]
Concerns about confidentiality of medical information or privacy of genetic information	Concerned about sharing information with researchers outside Mayo Clinic	“I would be down there in five minutes if it was just strictly for Mayo. But this day and age, yes, they tell me you’re a bar code, but I’m a firm believer that somewhere down the line that bar code is going to turn into a name.” [Male, age 71 (refuser)] “I have participated in research at Mayo before, but this is a privacy issue. I don’t think I want Mayo Clinic giving my information, especially my genetic information, to someone else.” [Male, age 70 (refuser)]
	Concerns about electronic data storage	“Things are getting so, with the internet, you can find out a lot of stuff really easy. I guess personally I don’t know anyone who has really been affected by that but you hear stories…five years ago I would not have been concerned at all. I’m probably more concerned now.” [Female, age 55 (refuser)]
	Concerns about information getting into the wrong hands	“When I was reading the consent, there was a part in there that said, I can’t quite remember, that they wouldn’t be able to protect or confirm that my blood sample would possibly be in the hands of future people who make decisions with insurance and life insurance and that kind of stuff.” [Female, age 51 (refuser)]