Table 2.
Percent agreementa (95% confidence limits (CL)) for each statement by respondent group and genetic finding
| Statement (emphases in original survey) | Proband % (95% CL) |
Blood Relative % (95% CL) |
Spouse/Partner % (95% CL) |
Pb |
|---|---|---|---|---|
|
| ||||
| Pat should be able to keep information about the [genetic finding] private from others in the family | ||||
| Pancreatic cancer discovery gene | 28.7 (24.7, 32.9) | 37.2 (34.3, 40.2) | 25.8 (21.7, 30.3) | 0.000 |
| BRCA2 | 27.0 (23.1, 31.3) | 33.1 (30.3, 36.0) | 24.6 (20.1, 29.1) | 0.002 |
| CFTR | 27.5 (23.7, 31.8) | 32.4 (29.6, 35.3) | 25.3 (21.3, 29.8) | 0.016 |
|
| ||||
| Researchers should ONLY offer Pat’s information about the [genetic finding] to blood relatives if Pat has given EXPLICIT PERMISSION to share genetic results | ||||
| Pancreatic cancer discovery gene | 69.7 (65.4, 73.7) | 69.4 (66.5, 72.2) | 67.2 (62.4, 71.6) | 0.665 |
| BRCA2 | 59.0 (54.4, 63.4) | 57.0 (54.0, 60.0) | 56.9 (52.0, 61.7) | 0.757 |
| CFTR | 58.4 (53.8, 62.8) | 55.4 (52.3, 58.4) | 56.5 (51.5, 61.3) | 0.560 |
|
| ||||
| If the new discovery is made AFTER PAT’S DEATH, the information about the [genetic finding] should be offered to Pat’s spouse | ||||
| Pancreatic cancer discovery gene | 90.5 (87.5, 92.8) | 89.7 (87.7, 91.4) | 92.2 (89.1, 94.4) | 0.375 |
| BRCA2 | 92.8 (90.0, 94.8) | 92.5 (90.7, 94.0) | 95.9 (93.5, 97.5) | 0.060 |
| CFTR | 93.3 (90.6, 95.2) | 92.6 (90.8, 94.0) | 97.5 (95.4, 98.6) | 0.003 |
|
| ||||
| If Pat’s spouse REFUSES the offer of information about the [genetic finding], researchers should offer the results directly to Pat’s children | ||||
| Pancreatic cancer discovery gene | 73.4 (69.2, 77.2) | 74.8 (72.1, 77.4) | 71.8 (67.2, 76.0) | 0.496 |
| BRCA2 | 79.9 (76.0, 83.3) | 81.3 (78.8, 83.6) | 80.8 (76.6, 84.3) | 0.810 |
| CFTR | 79.6 (75.7, 83.0) | 80.0 (77.5, 82.4) | 79.9 (75.7, 83.6) | 0.982 |
|
| ||||
| If the new discovery is made AFTER PAT’S DEATH, and Pat’s wishes about sharing genetic information are UNKNOWN, the information about the [genetic finding] should be offered to Pat’s blood relatives | ||||
| Pancreatic cancer discovery gene | 86.0 (82.5, 88.8) | 86.5 (84.2, 88.4) | 87.4 (83.7, 90.3) | 0.835 |
| BRCA2 | 87.8 (84.5, 90.5) | 89.1 (87.1, 90.9) | 89.9 (86.5, 92.5) | 0.601 |
| CFTR | 88.5 (85.3, 91.1) | 89.7 (87.7, 91.4) | 90.1 (86.7, 92.7) | 0.719 |
|
| ||||
| If the new discovery is made AFTER PAT’S DEATH, and Pat previously said NOT TO SHARE genetic information, the information about the [genetic finding] should NOT be offered to Pat’s blood relatives | ||||
| Pancreatic cancer discovery gene | 32.1 (28.0, 36.5) | 35.5 (32.6, 38.5) | 29.8 (25.5, 34.5) | 0.096 |
| BRCA2 | 27.2 (23.4, 31.5) | 31.4 (28.6, 34.3) | 25.3 (21.2, 30.0) | 0.046 |
| CFTR | 28.8 (24.8, 33.1) | 29.6 (26.9, 32.5) | 25.4 (21.4, 30.0) | 0.291 |
a
Combines the responses “strongly agree” and “agree” on a 5-point Likert scale that included the responses “strongly agree,” “agree,” “neither agree nor disagree,” “disagree,” and “strongly disagree.”
b
P value associated with 3 (respondent group) × 2 (strongly agree/agree vs. strongly disagree/disagree/neutral) chi-square test.