Table 3.
Facilitators and barriers to participation in future somatic gene editing clinical trials
| Facilitators | Patients N= 32 (%)a | Parents N= 31 (%)a | Physicians N= 17 (%)a |
|---|---|---|---|
| I want to help other patients with SCD | 31 (97) | 27 (87) | 13 (76) |
| I want to contribute to science | 15 (47) | 22 (71) | 11 (65) |
| It would be better to do something rather than just wait for [my/my child’s/my patient’s] SCD to get worse | 26 (81) | 24 (77) | 11 (65) |
| I hope it would help [my/my child’s/my patient’s] SCD | 27 (84) | 27 (87) | 15 (88) |
| I expect that it would help[my/my child’s/my patient’s] SCD | 22 (69) | 26 (84) | 15 (88) |
| Maybe it would help [my/my child’s/my patient’s] SCD in the long run, if the research succeeds | 21 (66) | 29 (94) | 14 (82) |
| For the sake of my loved ones | 24 (75) | 21 (68) | n/a |
| Barriers | |||
| It seems too dangerous | 20 (63) | 18 (58) | 8 (47) |
| It seems like a lot of work for [me/my child/my patient] to be involved in the study | 12 (38) | 10 (32) | 6 (35) |
| I don’t want [me/my child/my patient] to be a guinea pig | 11 (34) | 17 (55) | 2 (12) |
| I don’t like the idea of messing with [my/my child’s/my patient’s] genes | 18 (56) | 21 (68) | 4 (24) |
| The purpose of the study would not solely benefit [me/my child/my patient] directly | 2 (6) | 9 (29) | 5 (29) |
aResponses included 0 = Not a Reason, 1 = Minor Reason, 2 = Moderate Reason, 3 = Strong Reason. Scores of 2 and 3 were used to calculate the numbers/percentages above.