Table 2.
Selected survey question and responses.
| Questions | Number of Participants | Some comments from participants |
|---|---|---|
| Are you more or less willing to share your data now that you had these choices? | ||
| More | 54a | “No change. I’m for research and would like to help either way. But, being explicit and providing this added information, makes me feel more at ease doing so.” |
| Less | 9 | |
| Other | 7 | |
| Is it important to you to know whether your data are being shared with for-profit or non-profit institutions? | ||
| Yes | 48b* | “Slightly important because I would only want to share this information if I knew researchers were going to use it for well meaning purposes.” |
| No | 7 | |
| I am indifferent | 15 | |
| If it were possible for you to know who is accessing your data, would you like to know this? | ||
| Yes | 62a* | “Yes, but more because of curiosity on what is going on with the research community, rather than actually feeling my privacy is being “invaded”” |
| No | 1 | |
| I am indifferent | 7 | |
| Would you feel more comfortable sharing your information if you know who is accessing it? | ||
| Yes | 62a* | No comments |
| No | 3 | |
| I am indifferent | 5 | |
| If there were an option for you to control the sharing of biosamples, such as tissue, blood and urine, would you want to control this? | ||
| Yes | 34 | No comments |
| No | 10 | |
| I am indifferent | 26 | |
| Is there anything else you would like to keep private in your medical record? (multiple choice) | ||
| No | 42 | “DNA info” “potentially criminally-related illnesses or drug use” “STDs” |
| Chronic disease | 5 | |
| Acute disease | 6 | |
a
p <.001
b
p <.05.
*
Indicates that this is a secondary hypothesis that was subjected to post-hoc analysis without correction for Type I Errors.