Table 2.
Answer General Preference Question |
Specific Preference Questions about Different Research Results Characteristics | ||||||||||||
---|---|---|---|---|---|---|---|---|---|---|---|---|---|
Established N yes (% yes) |
Not-Well Established N yes (% yes) |
A Lot More Likely To Get Disease N yes (% yes) |
A Little More Likely To Get Disease N yes (% yes) |
Treatable or Preventable N yes (% yes) |
Not Treatable or Not Preventable N yes (% yes) |
Severe (Fatal or Disabling) N yes (% yes) |
Not Severe (Fatal or Disabling) N yes (% yes) |
Childhood Onset N yes (% yes) |
Adulthood Onset N yes (% yes) |
Composite Preference Measure (Wants All Specific Results) N yes (% yes) |
|||
Subject of Genetic Research Results | Parent | Want to Receive All Results | 722 (96.5) | 492 (65.8) | 689 (92.6) | 587 (78.8) | 727 (98.5) | 636 (86.5) | 650 (87.2) | 692 (93.1) | N/A | N/A | 389 (53.5) |
Want to Choose Results | 181 (77.8) | 66 (28.5) | 165 (71.1) | 96 (41.4) | 222 (96.5) | 96 (41.5) | 99 (42.6) | 158 (68.0) | N/A | N/A | 27 (11.8) | ||
Child | Want to Receive All Results | 767 (97.2) | 539 (68.3) | 740 (94.1) | 636 (81.0) | 775 (99.1) | 663 (85.0) | 671 (85.3) | 731 (93.1) | 761 (96.8) | 744 (94.9) | 439 (56.9) | |
Want to Choose Results | 142 (81.9) | 47 (27.1) | 122 (70.3) | 58 (33.2) | 168 (97.4) | 67 (38.8) | 72 (41.2) | 110 (63.1) | 135 (77.5) | 113 (65.1) | 19 (11.3) |
Note: The total number of respondents might be different across the cells of this table. They are based on the number of respondents who answered both questions and not every respondent answered every question. The composite preference measure is only calculated for those respondents who answered all of the specific preference questions. All Chi-square tests (general preference question by each specific preference question) were statistically significant with p<0.001, except for the category “Treatable or Preventable” (p=0.08).