Table 3.
What do patients need to know about non-invasive prenatal testing in order to give informed consent for the test
| n (%) | |
|---|---|
| NIPT (in general) | |
| NIPT is a screening test and not diagnostic | 431 (90.7) |
| What conditions can be detected with NIPT | 427 (89.9) |
| How much NIPT costs | 425 (89.5) |
| NIPT analyzes cell-free fetal DNA in maternal blood | 355 (74.7) |
| NIPT could detect chromosomal changes of unknown significance | 252 (53.1) |
| Accuracy of NIPT for each genetic condition it is screening for | 238 (50.1) |
| The clinical presentation and prognosis of the genetic conditions NIPT can screen for | 229 (48.2) |
| NIPT results | |
| That results may need to be confirmed with diagnostic testing | 418 (88.0) |
| What a ‘positive’ or ‘negative’ result means | 415 (87.4) |
| How long it takes to receive the NIPT results | 376 (79.2) |
| How the results will be provided to the patient | 369 (77.7) |
| What options are available following a high-probability NIPT result | 352 (74.1) |
| What diagnostic testing involves and the associated risks | 319 (67.2) |
| Limitations of NIPT | |
| That NIPT cannot detect all genetic conditions | 419 (88.2) |
| Possibility of a false positive or false negative NIPT result | 409 (86.1) |
| Possibility of receiving incomplete or no results | 403 (84.8) |
| NIPT cannot detect all other possible causes of a condition or disability | 353 (74.3) |
| Possibility of incidental findings | 271 (57.1) |
| Sex of the baby cannot be withheld if an sex chromosome aneuploidy is suspected | 229 (48.2) |
| Reasons that someone may receive incomplete or no results | 207 (43.6) |
| NIPT results could be affected by placental mosaicism | 196 (41.3) |
| The type of incidental findings that are possible | 117 (24.6) |
| Post-test management of sample and test results | |
| How data from results will be managed and/or used in the future | 268 (56.4) |
| How the blood sample will be managed and/or used in the future | 159 (33.5) |
| How long data from results will be stored | 127 (26.7) |
| How long the blood sample will be stored | 110 (23.2) |