Table 4 Participants’ attitudes toward biobank research (n = 967)
Agree | Neutral | Disagree | |
|---|---|---|---|
Donation | |||
People should donate biological samples to improve the health of future generations | 28 (2.9) | 144 (14.9) | 795 (82.2) |
People should donate biological samples even if there will not be a direct health benefit to them | 166(17.2) | 206 (21.3) | 595(61.5) |
People who donate biological specimens should receive financial compensation that is in addition to any travel expenses | 171(17.7) | 223 (23.1) | 573(59.3) |
Storage | |||
If people change their minds, they should have the right to withdraw their consent for the use of their biological samples | 92(9.5) | 119 (12.3) | 756(78.2) |
Privacy | |||
Researchers must maintain the privacy of a donor’s medical information when they perform research | 17(1.8) | 82 (8.5) | 868(89.8) |
Data sharing | |||
It is acceptable for biological samples to be shared with researchers at other institutions in my country | 112(11.6) | 153 (15.8) | 702(72.6) |
It is acceptable for samples to be shared with researchers at institutions in other countries | 222(23) | 195 (20.2) | 550(56.9) |
The legal authorities should have the right to obtain my genetic results when necessary | 223(23.1) | 174 (18.0) | 570(58.9) |
Researchers should receive governmental approval prior to exporting samples out of the country | 72(7.4) | 122 (12.6) | 773(79.9) |
Return of results | |||
If the analysis of my biological specimens reveals a disease that can be treated or prevented, then either I or my doctor should be informed of these results | 22(2.3) | 76 (7.9) | 869(89.9) |
Even if the analysis of my biological specimens reveals a genetic disease that cannot be treated or prevented, I still want to be informed of these results | 59(6.1) | 91 (9.4) | 817(84.5) |
Mean total “attitudes toward biobank research” score, mean ± SD | 15.07 ± 3.64 | ||