Table 2.
Demographic characteristics of survey respondents who permitted access to their sample at the time of initial consent, compared with respondents who restricted sample access at T1 and at both T1 and T2.
| Characteristica | All permitters | Restrictors | |||
|---|---|---|---|---|---|
| T1, N = 580b | All T1, N = 584c | p | T1 and T2, N = 136d | p | |
| Age | 0.9561 | 0.2348 | |||
| Mean (SD) | 66.4 (13.1) | 66.4 (13.5) | 64.6 (15.2) | ||
| Median, range | 68.0, 20–97 | 67.8, 20–97 | 66.4, 23–95 | ||
| Time since biobank enrollment | <0.0001 | 0.0001 | |||
| ≤1 year | 158 (27.2) | 227 (38.9) | 61 (44.9) | ||
| >1 year | 422 (72.8) | 357 (61.1) | 75 (55.1) | ||
| Last invited to participate in research | <0.0001 | <0.0001 | |||
| Never invited | 550 (94.8) | 492 (84.2) | 113 (83.1) | ||
| ≤1 year | 2 (0.3) | 54 (9.2) | 17 (12.5) | ||
| 1–3 years | 11 (1.9) | 12 (2.1) | 1 (0.7) | ||
| >3 years | 17 (2.9) | 26 (4.5) | 5 (3.7) | ||
| Gender | 0.4266 | 0.5819 | |||
| Male | 182 (31.4) | 196 (33.6) | 46 (33.8) | ||
| Female | 398 (68.6) | 388 (66.4) | 90 (66.2) | ||
| Race | 0.6954 | 0.4511 | |||
| White | 534 (92.4) | 535 (91.8) | 123 (90.4) | ||
| Non-White | 44 (7.6) | 48 (8.2) | 13 (9.6) | ||
| Education | 0.2901 | 0.1582 | |||
| Less than high school diploma | 8 (1.4) | 9 (1.6) | 5 (3.7) | ||
| High school diploma or GED | 91 (15.9) | 113 (19.8) | 29 (21.3) | ||
| Some college | 184 (32.1) | 188 (33.0) | 43 (31.6) | ||
| College graduate | 129 (22.5) | 126 (22.1) | 29 (21.3) | ||
| Graduate education | 161 (28.1) | 134 (23.5) | 30 (22.1) | ||
| Marital status at time of consent | 0.0849 | 0.0030 | |||
| Single | 32 (5.6) | 48 (8.3) | 17 (12.6) | ||
| Married | 457 (79.5) | 430 (74.5) | 91 (67.4) | ||
| Separate/divorced/widowed | 86 (15.0) | 99 (17.2) | 27 (20.0) | ||
| Survived by | |||||
| Anyone | 573 (98.8) | 580 (99.3) | 0.3574 | 132 (97.1) | 0.1389 |
| Grandparents | 25 (4.4) | 32 (5.5) | 0.3733 | 10 (7.6) | 0.1305 |
| Parents | 189 (33.2) | 182 (31.5) | 0.5452 | 46 (34.8) | 0.7107 |
| Siblings | 507 (88.5) | 504 (87.0) | 0.4574 | 108 (81.8) | 0.0386 |
| Children | 507 (88.5) | 449 (77.5) | <0.0001 | 75 (56.8) | <0.0001 |
aUnless otherwise noted, the format for all values is N (%).
bSurvey respondents who permitted next-of-kin access to their biobank sample at consent (T1).
cSurvey respondents who restricted next-of-kin access to their biobank sample at consent (T1).
dSurvey respondents who restricted next-of-kin access at consent and at the time of survey (T1 and T2).