Table 3 Aspects of biobank research that affect willingness to donate. (n = 967)
Important | Moderately Important | Not important | |
|---|---|---|---|
Donation | |||
Future research on my biological samples could improve healthcare for people in the future | 50 (5.2) | 120 (12.4) | 797 (82.4) |
Future research on my biological samples will be reviewed by an ethics committee | 41 (4.2) | 70 (7.2) | 856 (88.5) |
My personal health will improve from my donation | 129 (13.3) | 180 (18.6) | 658 (68) |
My religion approves of my donating biological samples | 77(8) | 63 (6.5) | 827(85.5) |
Privacy | |||
My medical information will remain private | 35(3.6) | 41 (4.2) | 891(92.1) |
if the analysis of my biological samples reveals any stigmatizing information about me, this will be kept private | 41 (4.2) | 52 (5.4) | 874 (90.4) |
Data Sharing | |||
My biological samples and medical information will be shared with researchers who are from other countries | 267(27.6) | 216 (22.3) | 484(50.1) |
Access to my biological samples and medical information in the biobank will be strictly controlled by an oversight committee | 51(5.3) | 71 (7.3) | 845 (87.4) |
Researchers outside of my institution will not receive any biological samples or medical information that directly identifies me | 90 (9.3) | 95 (9.8) | 782(80.9) |
Return of results | |||
I will be able to obtain the genetic results from the analysis of my biological samples | 69 (7.1) | 77 (8.0) | 821 (84.9) |
Mean total “aspects” score, mean ± SD | 12.7 ± 3.2 | ||