Pregnant Women s Views About the Ethics of Prenatal Whole Genome Sequencing
| Status: | Completed |
|---|---|
| Conditions: | Women's Studies |
| Therapuetic Areas: | Reproductive |
| Healthy: | No |
| Age Range: | 18 - 50 |
| Updated: | 12/1/2018 |
| Start Date: | June 5, 2017 |
| End Date: | February 12, 2018 |
Background:
Prenatal whole genome sequencing (PWGS) will give expecting parents large amounts of genetic
data about their baby. This raises ethical concerns. Researchers want to find out if women
want access to the kind of data PWGS provides. They want to know why and under what
circumstances women would or would not want the data.
Objective:
To explore the views of pregnant women about possible use of PWGS. To find out whether they
would want different categories of genetic data, and how they would use such findings.
Eligibility:
Women ages 18 and older who pregnant and speak English or Spanish
Design:
Participants will be recruited by their doctors.
Participants will take a survey about their views of PWGQ. They may take it online or on
paper.
Prenatal whole genome sequencing (PWGS) will give expecting parents large amounts of genetic
data about their baby. This raises ethical concerns. Researchers want to find out if women
want access to the kind of data PWGS provides. They want to know why and under what
circumstances women would or would not want the data.
Objective:
To explore the views of pregnant women about possible use of PWGS. To find out whether they
would want different categories of genetic data, and how they would use such findings.
Eligibility:
Women ages 18 and older who pregnant and speak English or Spanish
Design:
Participants will be recruited by their doctors.
Participants will take a survey about their views of PWGQ. They may take it online or on
paper.
The impending implementation of prenatal whole genome sequencing (PWGS) raises a host of
ethical concerns given the massive amounts of genetic information that expecting parents will
be able to learn about their baby. This project involves a cross-sectional quantitative
survey of pregnant women to explore whether they want access to the kinds of information
provided by PWGS, why and under what circumstances. The survey will address questions such
as: What sorts of information do pregnant women want to know about their baby, and why? What,
if anything, would they do with the information? What kind of guidance would pregnant women
like from their medical team regarding fetal genetic testing? Given the range of practical
and ethical challenges posed by PWGS, our data will inform practitioners approaches towards
PWGS as the technology develops and becomes more widely available. It is imperative that
government regulators and professional societies take into account the views of people
directly affected by any policies that are created - including patients themselves - before
crafting rules for whether, when and how to utilize PWGS.
ethical concerns given the massive amounts of genetic information that expecting parents will
be able to learn about their baby. This project involves a cross-sectional quantitative
survey of pregnant women to explore whether they want access to the kinds of information
provided by PWGS, why and under what circumstances. The survey will address questions such
as: What sorts of information do pregnant women want to know about their baby, and why? What,
if anything, would they do with the information? What kind of guidance would pregnant women
like from their medical team regarding fetal genetic testing? Given the range of practical
and ethical challenges posed by PWGS, our data will inform practitioners approaches towards
PWGS as the technology develops and becomes more widely available. It is imperative that
government regulators and professional societies take into account the views of people
directly affected by any policies that are created - including patients themselves - before
crafting rules for whether, when and how to utilize PWGS.
- INCLUSION CRITERIA:
- Participants must be 18 years of age
- Participants must be pregnant
- Participants must speak English or Spanish
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