Table 3.
Willingness and Attitudes toward Participating in a Biobank by Consent and Data Sharing Model and across Models
|
Biobank Consent and Data Sharing Model |
All |
BC versus BO | BC versus TC | |||||||
|---|---|---|---|---|---|---|---|---|---|---|
|
Broad-Controlled (BC) |
Broad-Open (BO) |
Tiered-Controlled (TC) |
||||||||
| N | % | N | % | N | % | N | % | |||
| Primary Outcome | ||||||||||
| Willingness to Participate in a Biobank | ||||||||||
| No definitely not / Probably not | 513 | 12 (10,14) | 611 | 15 (13,18) | 487 | 12 (9,15) | 1,611 | 13 (12,15) | X12 = 4.48, p = 0.03 |
X12 = 1.07, p = 0.30 |
| Not sure | 853 | 20 (17,22) | 913 | 20 (17,23) | 853 | 22 (19,25) | 2,619 | 20 (19,22) | ||
| Yes probably / Yes definitely | 2,880 | 68 (65,72) | 2,702 | 65 (61,69) | 2,758 | 66 (62,71) | 8,340 | 66 (63,69) | ||
| Secondary Outcomes | ||||||||||
| Perceived Benefits | ||||||||||
| Low (1.0–2.5) | 143 | 4 (3,5) | 147 | 4 (3,5) | 146 | 3 (2,5) | 436 | 4 (3,5) | X12 = 0.70, p = 0.79 |
X12 = 1.42, p = 0.23 |
| Intermediate (2.5–3.5) | 887 | 21 (18,23) | 926 | 22 (19,25) | 934 | 23 (20,27) | 2,747 | 22 (20,24) | ||
| High (3.5–5.0) | 3,164 | 75 (72,78) | 3,063 | 75 (71,78) | 2,952 | 73 (69,77) | 9,179 | 74 (72,77) | ||
| Concerns | ||||||||||
| Low (1.0–2.5) | 1,321 | 34 (30,38) | 1,231 | 32 (28,37) | 1,305 | 34 (29,39) | 3,857 | 33 (30,37) | X12 = 1.23, p = 0.27 |
X12 = 0.06, p = 0.80 |
| Intermediate (2.5–3.5) | 1,263 | 30 (28,33) | 1,243 | 30 (27,33) | 1,175 | 30 (28,32) | 3,681 | 30 (29,32) | ||
| High (3.5–5.0) | 1,520 | 36 (32,40) | 1,636 | 38 (34,42) | 1,479 | 36 (32,40) | 4,635 | 36 (33,40) | ||
| Information Needs | ||||||||||
| Low (1.0–2.5) | 176 | 5 (3,6) | 179 | 6 (5,8) | 190 | 5 (3,6) | 545 | 5 (4,6) | X12 = 0.08, p = 0.77 | X12 = 1.30, p = 0.25 |
| Intermediate (2.5–3.5) | 831 | 22 (19,24) | 695 | 19 (17,21) | 767 | 19 (17,22) | 2,293 | 20 (18,22) | ||
| High (3.5–5.0) | 3,161 | 74 (71,77) | 3,267 | 75 (72,78) | 3,087 | 76 (72,80) | 9,506 | 75 (72,77) | ||
Secondary outcomes were defined as the average of the recoded survey items (1 = No, definitely not, …, 5 = Yes, definitely) that comprised the outcomes. Observed frequencies and survey-adjusted percentages (95% CI) are reported for all outcomes. Wald tests were performed to assess differences between data sharing models (broad-controlled [BC] versus broad-open [BO]) and between consent types (broad-controlled versus tiered-controlled).