Evidence map›Paper›PMID 23743552›Full record

ArticleGenetics in medicine : official journal of the American College of Medical Genetics2014

Parents' interest in whole-genome sequencing of newborns.

Aaron J Goldenberg, Daniel S Dodson, Matthew M Davis, Beth A Tarini

Abstract read
In one paragraph

Article in Genetics in medicine : official journal of the American College of Medical Genetics, 2014. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 61 papers, 2 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
61citing papers in PubMed, 2 pooled it
–field-weighted citation impact
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

61 citing papers in PubMed, 2 syntheses or guidelines pooled it.

  1. Pooled it
  2. Pooled it
  3. Trial
  4. Trial
  5. Trial
  6. Maternal perspectives on sharing newborn genomic data.European journal of human genetics : EJHG · 2026
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  10. Review
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  14. Family genetic risk communication and reverse cascade testing in the BabySeq project.Genetics in medicine : official journal of the American College of Medical Genetics · 2025
    Article
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  20. Perception of genomic newborn screening among peripartum mothers.European journal of human genetics : EJHG · 2024
    Article

1 more citing papers are in PubMed but not listed here.

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

4 authors.

Aaron J GoldenbergDepartment of Bioethics, Center for Genetic Research Ethics and Law, Case Western Reserve University, Cleveland, Ohio, USA.
Daniel S DodsonChild Health Evaluation and Research (CHEAR) Unit, University of Michigan, Ann Arbor, Michigan, USA.
Matthew M Davis1] Child Health Evaluation and Research (CHEAR) Unit, University of Michigan, Ann Arbor, Michigan, USA [2] Division of General Medicine and Gerald R. Ford School of Public Policy, University of Michigan, Ann Arbor, Michigan, USA [3] Institute for Healthcare Policy and Innovation, University of Michigan, Ann Arbor, Michigan, USA.
Beth A TariniChild Health Evaluation and Research (CHEAR) Unit, University of Michigan, Ann Arbor, Michigan, USA.

Funding

Training ProgramP50HG003390 · NHGRI · CASE WESTERN RESERVE UNIVERSITY · PI MARSHALL, PATRICIA A. · 2004 to 2013
$8.8M
SHORT-TERM TRAINING IN HEALTH PROF SCHOOLST35HL007690 · NHLBI · UNIVERSITY OF MICHIGAN AT ANN ARBOR · PI FLAHERTY, KEVIN R · 1990 to 2024
$3.3M
Improving Healthcare Delivery for Infants with Positive Newborn Screening ResultsK23HD057994 · NICHD · UNIVERSITY OF MICHIGAN AT ANN ARBOR · PI TARINI, BETH A · 2009 to 2013
$662k
NHGRI NIH HHS 2P50-HG-003390-06NHGRI NIH HHS P50 HG003390NHLBI NIH HHS T35 HL007690NICHD NIH HHS K23 HD057994NICHD NIH HHS K23HD057994
6 · The paper itself

Abstract

purposeThe aim of this study was to assess parents' interest in whole-genome sequencing for newborns.

methodsWe conducted a survey of a nationally representative sample of 1,539 parents about their interest in whole-genome sequencing of newborns. Participants were randomly presented with one of two scenarios that differed in the venue of testing: one offered whole-genome sequencing through a state newborn screening program, whereas the other offered whole-genome sequencing in a pediatrician's office.

resultsOverall interest in having future newborns undergo whole-genome sequencing was generally high among parents. If whole-genome sequencing were offered through a state's newborn-screening program, 74% of parents were either definitely or somewhat interested in utilizing this technology. If offered in a pediatrician's office, 70% of parents were either definitely or somewhat interested. Parents in both groups most frequently identified test accuracy and the ability to prevent a child from developing a disease as "very important" in making a decision to have a newborn's whole genome sequenced.

conclusionThese data may help health departments and children's health-care providers anticipate parents' level of interest in genomic screening for newborns. As whole-genome sequencing is integrated into clinical and public health services, these findings may inform the development of educational strategies and outreach messages for parents.

Indexed as

Genetic TestingGenome, HumanSequence Analysis, DNAAttitude to HealthData CollectionHumansInfant, NewbornNeonatal ScreeningParentsPhysicians, Primary CareUnited States

Identifiers

PMID23743552
PMCPMC4164384

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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.