Pregnant Women s Views About the Ethics of Prenatal Whole Genome Sequencing

Study Overview
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Brief Summary
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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.

Detailed Description
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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.

Official Title
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Pregnant Women s Views About the Ethics of Prenatal Whole Genome Sequencing

Conditions
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Pregnant

Participation Criteria
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Eligibility Criteria
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INCLUSION CRITERIA: Participants must be 18 years of age Participants must be pregnant Participants must speak English or Spanish

Ages Eligible for Study
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Minimum Age: 18 Years
Maximum Age: 50 Years

Sexes Eligible for Study
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Female

Accepts Healthy Volunteers
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No

Study Plan
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How is the study designed?
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Arms and Interventions

| Participant Group/Arm | Intervention/Treatment |
| --- | --- |
| Pregnant women<br>Women who are pregnant | |

What is the study measuring?
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Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Views of pregnant women | This study seeks to explore the views of pregnant women about the hypothetical utility of PWGS, whether they would want different categories of genetic information, and how they would anticipate using such findings. | at baseline | 

 Terms related to the study
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Keywords Provided by Centre Hospitalier Valida
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Prenatal Testing