Surveying Parents About Genome Screening of Newborns

NCT ID: NCT01736501

Last Updated: 2025-11-12

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

WITHDRAWN

Clinical Phase

NA

Study Classification

INTERVENTIONAL

Brief Summary

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A 10 minute baseline survey will be administered to parents of healthy newborn infants while in the hospital after delivery at Brigham and Women's Hospital, to be followed by a 25 minute survey 3-24 months later. We will measure parents' attitudes and preferences related to genome screening of newborns. The specific aims of this study are:

1. To investigate whether parents' opinions regarding genome screening of newborns change between the first 48 hours post-partum and 3-24 months post-partum.

a. We hypothesize that there will not be significant differences between interest in genome screening results in the 48 hours post-partum compared to 3-24 months post-partum.
2. To determine whether seeing hypothetical genome screening results affects parents' decisions regarding whether they would want genome screening for their newborn.

1. We expect many parents to state initially (in the 48 hours post-partum) that they would elect to have genome screening for their newborn if it were available. In the follow-up survey, half of study participants will receive hypothetical scenarios in which they will need to struggle with the probabilistic and ambiguous nature of the information that could be derived from genome sequencing. We will examine whether this alters their preferences. We will also explore whether parents who receive hypothetical genome screening results scenarios are more likely to alter their preferences than parents who do not receive hypothetical scenarios.

Detailed Description

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Conditions

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Parents of Healthy Newborns

Study Design

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Allocation Method

RANDOMIZED

Blinding Strategy

NONE

Study Groups

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Baseline1-demographics

Baseline survey- demographics only

Group Type NO_INTERVENTION

No interventions assigned to this group

Baseline1 w/genetics

Genetics education, baseline interest in genome screening - 1

Group Type OTHER

Genetics education at baseline

Intervention Type OTHER

Baseline2-demographics

Baseline survey- demographics only

Group Type OTHER

Hypothetical genomic scenarios at follow-up

Intervention Type OTHER

Baseline2 w/genetics

Genetics education, baseline interest in genome screening - 2

Group Type OTHER

Genetics education at baseline

Intervention Type OTHER

Hypothetical genomic scenarios at follow-up

Intervention Type OTHER

Interventions

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Genetics education at baseline

Intervention Type OTHER

Hypothetical genomic scenarios at follow-up

Intervention Type OTHER

Eligibility Criteria

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Inclusion Criteria

* Parent of a healthy newborn in the BWH Department of Obstetrics
* English-speaking

Exclusion Criteria

* Impaired decision-making capacity
* Newborn with life-threatening health concerns in the 48 hours post-partum
Eligible Sex

ALL

Accepts Healthy Volunteers

Yes

Sponsors

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Brigham and Women's Hospital

OTHER

Sponsor Role lead

Responsible Party

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Robert C. Green, MD, MPH

Lecturer on Medicine & Associate Director for Research, Partners Center for Personalized Genetic Medicine

Responsibility Role PRINCIPAL_INVESTIGATOR

Principal Investigators

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Robert C. Green, MD, MPH

Role: PRINCIPAL_INVESTIGATOR

Brigham and Women's Hospital

Locations

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Brigham and Women's Hospital

Boston, Massachusetts, United States

Site Status

Countries

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United States

References

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Waisbren SE, Back DK, Liu C, Kalia SS, Ringer SA, Holm IA, Green RC. Parents are interested in newborn genomic testing during the early postpartum period. Genet Med. 2015 Jun;17(6):501-4. doi: 10.1038/gim.2014.139. Epub 2014 Dec 4.

Reference Type RESULT
PMID: 25474344 (View on PubMed)

Other Identifiers

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2012-P-001197

Identifier Type: -

Identifier Source: org_study_id