TABLE 2.
Survey questions and responses–genetics in transplant listing decisions
| Question | Liver | Heart | Kidney | Total |
|---|---|---|---|---|
| Current use | n (%) | |||
| Does your program ever require genetic testing for a specific clinical indication before listing? | ||||
| Yes | 13 (72%) | 15 (79%) | 11 (46%) | 39 (64%) |
| No | 5 (28%) | 4 (21%) | 13 (54%) | 22 (36%) |
| Does your program ever require genetic testing without a specific clinical indication before listing? | ||||
| Yes | 4 (20%) | 4 (21%) | 2 (8%) | 10 (16%) |
| No | 16 (80%) | 15 (79%) | 22 (92%) | 53 (84%) |
| Views | ||||
| How would you consider a BRCA1 pathogenic variant in listing decision? | ||||
| Relative contraindication | 1 (5%) | 3 (15%) | 1 (4%) | 5 (8%) |
| Absolute contraindication | 0 | 0 | 0 | 0 |
| Not a contraindication | 19 (95%) | 17 (85%) | 24 (96%) | 60 (92%) |
| How would you consider a TP53 pathogenic variant in listing decision? | ||||
| Relative contraindication | 10 (56%) | 11 (55%) | 17 (71%) | 38 (61%) |
| Absolute contraindication | 0 | 3 (15%) | 0 | 3 (5%) |
| Not a contraindication | 8 (44%) | 6 (30%) | 7 (29%) | 21 (34%) |
| How would you consider an HD pathogenic variant in listing decision? | ||||
| Relative contraindication | 4 (20%) | 4 (20%) | 3 (13%) | 11 (17%) |
| Absolute contraindication | 0 | 2 (10%) | 0 | 2 (3%) |
| Not a contraindication | 16 (80%) | 14 (70%) | 21 (87%) | 51 (80%) |
| Would you require genetic testing for child with parent with HD before listing decision? | ||||
| Yes | 4 (21%) | 7 (35%) | 3 (13%) | 14 (22%) |
| No | 15 (79%) | 13 (65%) | 21 (87%) | 49 (78%) |
| Experience | ||||
| Has your program ever used a secondary finding as a reason not to list? | ||||
| Yes | 1 (5%) | 3 (15%) | 0 | 4 (6%) |
| No | 19 (95%) | 17 (85%) | 24 (100%) | 60 (94%) |
| Has your program ever used family history of an adult-onset, heritable condition as a reason not to list? | ||||
| Yes | 0 | 1 (5%) | 0 | 1 (2%) |
| No | 20 (100%) | 19 (95%) | 24 (100%) | 63 (98%) |
| Program protocol | ||||
| Does your program use a genetic specialist to interpret genetic test results? | ||||
| Always | 10 (56%) | 18 (90%) | 6 (25%) | 34 (55%) |
| Usually | 7 (39%) | 1 (5%) | 11 (46%) | 19 (31%) |
| Sometimes | 1 (6%) | 1 (%%) | 7 (29%) | 9 (14%) |
| Never | 0 | 0 | 0 | |
| What policies does your program have for genetics in listing decisions? | ||||
| Formal ones | 0 | 2 (10%) | 0 | 2 (3%) |
| Informal ones | 4 (22%) | 6 (30%) | 3 (13%) | 13 (21%) |
| None | 14 (28%) | 12 (60%) | 21 (87%) | 47 (76%) |
| Expertise | Mean ± standard deviation | |||
| Level of expertise in genetics related to organa | 3.6 ± 0.9 | 3.2 ± 1.1 | 3.3 ± 1.0 | 3.4 ± 1.0 |
| Level of expertise in genetics overalla | 2.2 ± 1.3 | 1.8 ± 1.0 | 1.7 ± 1.0 | 1.9 ± 1.2 |
a
Level of expertise reported on a scale of 1–5; 1 = novice, 5 = expert.