Table 3:
Knowledge of and attitudes about use and sharing of prenatal genetic data
| Control Group (n=80) | Intervention Group (n=80) | P-value | |
|---|---|---|---|
|
| |||
| Primary Outcomes | |||
|
| |||
| The company that did your cell-free DNA test can share or sell your genetic information to others (eg. researchers,databases, or other companies) for research. | (n=80) | (n=78) | 0.031 |
| True | 8 (10.0) | 2 (2.6) | |
| False | 23 (28.8) | 36 (46.2) | |
| Unsure | 49 (61.3) | 40 (51.3) | |
|
| |||
| The company that did my prenatal genetic testing shares MY deidentified DNA with … | |||
|
| |||
| Academic researchers (eg. professors at a university) | 0.211 | ||
| I would not want this | 9 (11.3) | 16 (20.0) | |
| I would probably not want this | 21 (26.3) | 12 (15.0) | |
| I would probably be fine with this | 32 (40.0) | 35 (43.8) | |
| I would be fine with this | 18 (22.5) | 17 (21.3) | |
|
| |||
| A government-funded database (for medical research) | 0.911 | ||
| I would not want this | 32 (40.0) | 31 (38.8) | |
| I would probably not want this | 16 (20.0) | 19 (23.8) | |
| I would probably be fine with this | 26 (32.5) | 23 (28.8) | |
| I would be fine with this | 6 (7.5) | 7 (8.8) | |
|
| |||
| Other companies that could make money from studying my genetic information | 0.991 | ||
| I would not want this | 34 (42.5) | 35 (43.8) | |
| I would probably not want this | 27 (33.8) | 28 (35.0) | |
| I would probably be fine with this | 14 (17.5) | 12 (15.0) | |
| I would be fine with this | 5 (6.3) | 5 (6.3) | |
|
| |||
| Secondary Outcomes | |||
|
| |||
| There are laws that protect the privacy of your and your baby’s genetic information. | 0.111 | ||
| True | 60 (75.0) | 69 (86.3) | |
| False | 0 (0%) | 0 (0%) | |
| Unsure | 20 (25.0) | 11 (13.8) | |
|
| |||
| Once health identifiers (eg. name, date of birth, home address) have been removed from your DNA, there is no way your genetic data could be traced back to you or your baby. | 0.491 | ||
| True | 7 (8.8) | 12 (15.0) | |
| False | 23 (28.8) | 21 (26.3) | |
| Unsure | 50 (62.5) | 47 (58.8) | |
|
| |||
| The company that did your cell-free DNA test can keep your genetic information for their own research. | (n=80) | (n=79) | 0.191 |
| True | 20 (25.0) | 12 (15.2) | |
| False | 7 (8.8) | 12 (15.2) | |
| Unsure | 53 (66.3) | 55 (69.6) | |
|
| |||
| Prenatal genetic testing reflects your baby′s DNA in addition to your own. Does this make you less likely to agree to a company sharing or selling this information? | 0.321 | ||
| Yes | 29 (36.3) | 30 (37.5) | |
| No | 34 (42.5) | 26 (32.5) | |
| Unsure | 17 (21.3) | 24 (30.0) | |
|
| |||
| The company that did my prenatal genetic testing saves … | |||
|
| |||
| MY deidentified DNA for their future research | 0.941 | ||
| I would not want this | 11 (13.8) | 14 (17.5) | |
| I would probably not want this | 18 (22.5) | 18 (22.5) | |
| I would probably be fine with this | 36 (45.0) | 34 (42.5) | |
| I would be fine with this | 15 (18.8) | 14 (17.5) | |
|
| |||
| MY BABY′s deidentified DNA for their future research | 0.461 | ||
| I would not want this | 14 (17.5) | 22 (27.5) | |
| I would probably not want this | 20 (25.0) | 15 (18.8) | |
| I would probably be fine with this | 33 (41.3) | 31 (38.8) | |
| I would be fine with this | 13 (16.3) | 12 (15.0) | |
|
| |||
| The company that did my prenatal genetic testing shares MY BABY’s deidentified DNA with … | |||
|
| |||
| Academic researchers (eg. professors at a university) | 0.351 | ||
| I would not want this | 12 (15.0) | 18 (22.5) | |
| I would probably not want this | 20 (25.0) | 12 (15.0) | |
| I would probably be fine with this | 31 (38.8) | 33 (41.3) | |
| I would be fine with this | 17 (21.3) | 17 (21.3) | |
|
| |||
| A government-funded database | (n=80) | (n=78) | 1.001 |
| I would not want this | 35 (43.8) | 34 (43.6) | |
| I would probably not want this | 17 (21.3) | 18 (23.1) | |
| I would probably be fine with this | 22 (27.5) | 21 (26.9) | |
| I would be fine with this | 6 (7.5) | 5 (6.4) | |
|
| |||
| Other companies that could make money from studying my baby′s genetic information | 0.881 | ||
| I would not want this | 35 (43.8) | 36 (45.0) | |
| I would probably not want this | 27 (33.8) | 30 (37.5) | |
| I would probably be fine with this | 13 (16.3) | 10 (12.5) | |
| I would be fine with this | 5 (6.3) | 4 (5.0) | |
Categorical data are (N%);
1
Fisher’s exact test.