NCT03105492

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

• Status: Completed
• Phase: —
• Study type: Observational
• Enrollment: 553 (actual)
• Sponsor: National Human Genome Research Institute (NHGRI) · NIH
• Sex: Female
• Age: 18 Years – 50 Years
• Healthy volunteers: Not accepted

Summary

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

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.

Conditions

• Pregnant

Timeline

• Start date: 2017-06-15
• Primary completion: 2018-02-12
• Completion: 2019-04-10
• First posted: 2017-04-10
• Last updated: 2019-04-22

Locations

1 site across 1 country: United States