Table 1.
Participant characteristics and responses
| Participant Characteristics (N=551) | ||||
|---|---|---|---|---|
| Gender | Female | 62% | ||
| Male | 38% | |||
| NICU Level | Level II | 3% | ||
| Level III | 37% | |||
| Level IV | 61% | |||
| Testing Practices | Overall (N=551) | Level II/III NICU (N=217) | Level IV NICU (N=334) | |
| Percentage of patients undergoing genetic testing | < 5% | 19% | 39% | 6% |
| 5–10% | 35% | 35% | 35% | |
| 11–25% | 30% | 19% | 37% | |
| 26–50% | 13% | 6% | 18% | |
| >50% | 3% | 2% | 4% | |
| Clinical geneticist at institution | No | 19% | 41% | 5% |
| Yes | 81% | 59% | 96% | |
| Standardized criteria for which patients undergo genetic testing | No | 71% | 77% | 66% |
| Yes | 17% | 11% | 21% | |
| Not sure | 13% | 12% | 13% | |
| Approval from genetics for sending some types of genetic tests | No | 46% | 54% | 41% |
| Yes | 45% | 38% | 50% | |
| Not sure | 9% | 8% | 9% | |
| Ability to send rapid whole exome sequencing (return of results <1 month) | No | 16% | 22% | 12% |
| Yes | 63% | 51% | 71% | |
| Not sure | 21% | 27% | 17% | |
| Counseling Practices | Overall (N=551) | Level II/III NICU (N=217) | Level IV NICU (N=334) | |
| What steps do you take to educate a family and seek consent before sending genetic sequencing tests? | ||||
| Genetics team usually meets with the family before sending the test | 58% | 43% | 68% | |
| Neonatology team usually discusses the test with the family | 81% | 87% | 78% | |
| Provide written information about genetic testing | 29% | 34% | 26% | |
| Get written consent from the family before sending the testing | 30% | 4% | 33% | |
| In your institution, are medical providers from the following disciplines responsible for disclosing genetic results to parents? | ||||
| Neonatologists | 95% | 98% | 93% | |
| Geneticists | 81% | 64% | 92% | |
| Genetic Counselors | 61% | 45% | 71% | |
| Neurologists | 48% | 43% | 51% | |
| Other | 10% | 9% | 10% | |