Table 3 Parent and health professional (HP) opinions regarding the use of genomic sequencing in newborn screening (gNBS).
Parents (n = 163)/ (Health professionals (n = 144)) | |||||
|---|---|---|---|---|---|
Strongly Disagree (%) | Disagree (%) | Unsure (%) | Agree (%) | Strongly Agree (%) | |
gNBS should be optional (HPs only) | (10.4) | (26.4) | (20.1) | (30.6) | (12.5) |
gNBS should be compulsory (Parents only) | 18.4 | 50.3 | – | 16.0 | 15.3 |
Parents should be informed about potential results | 1.8 (0.7) | 0.6 (0.7) | −(0.7) | 19.0 (25.0) | 77.3 (72.9) |
All sequencing results should be available to parents | 1.2 (5.6) | 7.4 (16.7) | −(31.3) | 36.2 (25.7) | 55.2 (20.8) |
Parents should be able to choose types of results | 3.1 (2.1) | 6.7 (14.6) | −(18.1) | 48.5 (43.8) | 41.7 (21.5) |
Parents should be required to provide consent | 1.2 (1.4) | 5.5 (1.4) | −3.5 | 33.1 (25.7) | 60.1 (68.1) |
Parents should have the ability to opt-out of gNBS | 4.3 (2.1) | 9.8 (0.7) | −(4.9) | 36.8 (31.9) | 49.1 (60.4) |
Data should be collected to determine benefit to health of infants | 0 (1.4) | 1.8 (0.7) | −(1.4) | 25.2 (24.3) | 73.0 (72.2) |
Laws against discrimination | −(1.4) | −(0.0) | −(2.1) | −(16.7) | −(79.9) |
