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 |