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Table 1 Values questions (as presented to interview participants)

From: Developing model biobanking consent language: what matters to prospective participants?

If I participate in this project. . . How much does this matter to you?
Not at all Very much
There is a chance that someone without permission could get access to my private information. 1 2 3 4 5
My data may reveal things about my family. 1 2 3 4 5
My data (along with others’) may help researchers learn things that could improve health care for people in the future. 1 2 3 4 5
There are laws to protect me, but they have gaps. 1 2 3 4 5
I probably will not learn anything helpful to my own health or medical care. 1 2 3 4 5
The risks could change over time. 1 2 3 4 5
My samples and information could be used for research I do not like or would rather not support. 1 2 3 4 5
The table below summarizes some of the things you learned from the consent form. To help decide whether you want to participate in the Million American Study, think about each statement and mark how much it matters to you. Don’t worry about anyone seeing your answers—this is just to help you think through for yourself what you might like to do