Outcome
Type |
Measure |
Description |
Time frame |
Safety issue |
Primary |
Knowledge about broad sharing of genetic data for non-clinical research purposes |
Using a newly designed survey instrument (the Prenatal Testing Opinions Survey), the investigators aim to answer the following question: What is patient knowledge about the potential sharing of their genetic data for non-clinical research purposes? Outcome will be measured on the Likert scale. |
This outcome will be assessed immediately after exposure to education (day 0) |
|
Primary |
Acceptability of broad sharing of genetic data for non-clinical research purposes |
Using a newly designed survey instrument (the Prenatal Testing Opinions Survey), the investigators aim to answer the following question: What is patient acceptance of laboratory-initiated sharing of their de-identified genetic data for non-clinical purposes? Outcome will be measured on the Likert scale. |
This outcome will be assessed immediately after exposure to education (day 0) |
|
Secondary |
Acceptability of retention of genetic data for non-clinical purposes |
Using a newly designed survey instrument (the Prenatal Testing Opinions Survey), the investigators aim to answer the following question: What is patient acceptance of retaining their de-identified genetic data to potentially use it for non-clinical purposes? Outcome will be measured on the Likert scale. |
This outcome will be assessed immediately after exposure to education (day 0) |
|
Secondary |
Acceptability of use of genetic data for non-clinical purposes |
Using a newly designed survey instrument (the Prenatal Testing Opinions Survey), the investigators aim to answer the following question: What is patient acceptance of using their de-identified genetic data for non-clinical purposes such as research and development? Outcome will be measured on the Likert scale. |
This outcome will be assessed immediately after exposure to education (day 0) |
|
Secondary |
Knowledge and understanding of aneuploidy screening and results |
Are patients aware that they underwent aneuploidy screening with cell-free fetal DNA (cfDNA)? Are they aware of their results? Outcome will be measured on the Likert scale. |
This outcome will be assessed immediately after exposure to education (day 0) |
|
Secondary |
Knowledge and understanding of carrier testing and results |
Using a newly designed survey instrument (the Prenatal Testing Opinions Survey), the investigators aim to answer the following question: Are patients aware that they underwent carrier testing? Are they aware of their results? Outcome will be measured on the Likert scale. |
This outcome will be assessed immediately after exposure to education (day 0) |
|
Secondary |
Acceptability of retention, use, and broad sharing of fetal genetic data for non-clinical research purposes |
Using a newly designed survey instrument (the Prenatal Testing Opinions Survey), the investigators aim to answer the following question: Assess maternal acceptance of each of these outcomes. Outcome will be measured on the Likert scale. |
This outcome will be assessed immediately after exposure to education (day 0) |
|
Secondary |
Maternal rationale for pursuing cfDNA |
Using a newly designed survey instrument (the Prenatal Testing Opinions Survey), the investigators aim to answer the following question: What prompted patient to pursue cfDNA testing? Outcome will be measured on the Likert scale. |
This outcome will be assessed immediately after exposure to education (day 0) |
|
Secondary |
Maternal knowledge of different commercial cfDNA providers |
Using a newly designed survey instrument (the Prenatal Testing Opinions Survey), the investigators aim to answer the following question: Are patents who have undergone cfDNA testing aware that multiple companies offer this service? Outcome will be measured on the Likert scale. |
This outcome will be assessed immediately after exposure to education (day 0) |
|
Secondary |
Maternal knowledge pertaining to Down Syndrome and the genetics of trisomies. |
Using a newly designed survey instrument (the Prenatal Testing Opinions Survey), the investigators aim to answer the following question: To what extent do mothers who have undergone cfDNA screening and are participating in this study understand these topics? Outcome will be measured on the Likert scale. |
This outcome will be assessed immediately after exposure to education (day 0) |
|
Secondary |
Maternal perceptions of the de-identifiability of genetic data |
Using a newly designed survey instrument (the Prenatal Testing Opinions Survey), the investigators aim to answer the following question: To what extent do mothers who have undergone cfDNA screening believe that deidentified genetic information is not re-identifiable? Outcome will be measured on the Likert scale. |
This outcome will be assessed immediately after exposure to education (day 0) |
|