Evidence map›Paper›PMID 38158591›Full record

ArticlePrenatal diagnosis2024

Trust in prenatal exome sequencing for expectant families facing unexplained fetal anomalies.

Harriet T Rothschild, Billie R Lianoglou, Nuriye N Sahin Hodoglugil, Katie Tick, Julia E H Brown, Teresa N Sparks

Open access · greenAbstract read
In one paragraph

Article in Prenatal diagnosis, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

0numbers the graph read from it
0cells of the map it votes in
0citing papers in PubMed
1.7field-weighted citation impact, top 13% of its field
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

0 citing papers in PubMed, 3 citations in OpenAlex.

No citing paper in PubMed yet.

4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

6 authors at 5 institutions in 2 countries.

Harriet T RothschildSchool of Medicine, University of California San Francisco (UCSF), San Francisco, California, USA.ORCID 0000-0001-5311-2872
Billie R LianoglouCenter for Maternal Fetal Precision Medicine, UCSF, San Francisco, California, USA.
Nuriye N Sahin HodoglugilInstitute for Human Genetics, UCSF, San Francisco, California, USA.ORCID 0009-0002-1121-6897
Katie TickDepartment of Obstetrics, Gynecology and Reproductive Sciences, UCSF, San Francisco, California, USA.
Julia E H BrownProgram in Bioethics, UCSF, San Francisco, California, USA.
Teresa N SparksCenter for Maternal Fetal Precision Medicine, UCSF, San Francisco, California, USA.ORCID 0000-0002-8593-2186
Society for Maternal-Fetal Medicine · USInstitute of Human Genetics · PLInstitute on Aging · USReproductive Science Center · USUniversity of California, San Francisco · US

Funding

The Emergence of Prenatal Gene Therapy: An "Embedded Ethics" Ethnography investigating Clinical, Scientific and Societal ValuesR00HG012379 · NHGRI · UNIVERSITY OF CALIFORNIA, SAN FRANCISCO · PI BROWN, JULIA E.H. · 2024 to 2025
$489k
The Emergence of Prenatal Gene Therapy: An “Embedded Ethics” Ethnography investigating Clinical, Scientific and Societal ValuesK99HG012379 · NHGRI · UNIVERSITY OF CALIFORNIA, SAN FRANCISCO · PI BROWN, JULIA E.H. · 2022 to 2023
$308k
Doris Duke Charitable Foundation 2021187NHGRI NIH HHS 5K99HG012379-02NHGRI NIH HHS K99 HG012379NHGRI NIH HHS R00 HG012379
6 · The paper itself

Abstract

objectiveDespite exome sequencing (ES) becoming increasingly incorporated into the prenatal setting, few studies have elucidated motivations for and trust in ES and genomic research among a diverse cohort of patients and their partners.

methodsThis is a qualitative study that involved semi-structured interviews with pregnant or recently pregnant individuals and their partners, interviewed separately, in the setting of ES performed through research for a fetal structural anomaly. All interview transcripts were coded thematically and developed by a multidisciplinary team.

resultsThirty-five individuals participated, the majority of whom (66%) self-identified as a racial or ethnic group underrepresented in genomic research. Many patients and their partners expressed trust in the healthcare system and research process and appreciated the extensive testing for information and closure. There were nonetheless concerns about data privacy and protection for individuals, including those underrepresented, who participated in genomic testing and studies.

conclusionOur findings illustrate important elements of motivation, trust and concern related to prenatal ES performed in the research setting, taking into account the perspectives not only of diverse and underrepresented study participants but also partners of pregnant individuals.

Indexed as

FetusTrustExome SequencingFemaleHumansMotivationPregnancyPrenatal Diagnosis

Identifiers

PMID38158591
PMCPMC10947859
OpenAlexW4390450031

What OpenQuestion holds

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Registered trials

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.