Evidence map›Paper›PMID 37511639›Full record

ArticleJournal of personalized medicine2023

Parents' Perspectives on the Utility of Genomic Sequencing in the Neonatal Intensive Care Unit.

Amy A Lemke, Michelle L Thompson, Emily C Gimpel, Katelyn C McNamara, Carla A Rich, Candice R Finnila, Meagan E Cochran, James M J Lawlor, Kelly M East, Kevin M Bowling and 31 more

Open access · goldAbstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Journal of personalized medicine, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 10 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
10citing papers in PubMed, 1 pooled it
7.5field-weighted citation impact, top 3% 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

10 citing papers in PubMed, 1 synthesis or guideline pooled it, 13 citations in OpenAlex.

  1. Pooled it
  2. Article
  3. Article
  4. Parents' perceptions of the utility of genetic testing in the NICU.Genetics in medicine : official journal of the American College of Medical Genetics · 2025
    Article
  5. How Neonatologists Use Genetic Information.The Journal of pediatrics · 2025
    Article
  6. Review
  7. Article
  8. Article
  9. Article
  10. Article
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

41 authors at 10 institutions in 1 country.

Amy A LemkeDepartment of Pediatrics, Norton Children's Research Institute, University of Louisville School of Medicine, Louisville, KY 40202, USA.
Michelle L ThompsonHudsonAlpha Institute for Biotechnology, Huntsville, AL 35806, USA.ORCID 0000-0001-8134-9017
Emily C GimpelDepartment of Pediatrics, Norton Children's Research Institute, University of Louisville School of Medicine, Louisville, KY 40202, USA.
Katelyn C McNamaraDepartment of Pediatrics, Norton Children's Research Institute, University of Louisville School of Medicine, Louisville, KY 40202, USA.
Carla A RichDepartment of Pediatrics, Norton Children's Research Institute, University of Louisville School of Medicine, Louisville, KY 40202, USA.
Candice R FinnilaHudsonAlpha Institute for Biotechnology, Huntsville, AL 35806, USA.
Meagan E CochranHudsonAlpha Institute for Biotechnology, Huntsville, AL 35806, USA.
James M J LawlorHudsonAlpha Institute for Biotechnology, Huntsville, AL 35806, USA.ORCID 0000-0003-1735-1766
Kelly M EastHudsonAlpha Institute for Biotechnology, Huntsville, AL 35806, USA.
Kevin M BowlingDepartment of Pathology and Immunology, Washington University School of Medicine, St. Louis, MO 63110, USA.
Donald R LatnerHudsonAlpha Institute for Biotechnology, Huntsville, AL 35806, USA.
Susan M HiattHudsonAlpha Institute for Biotechnology, Huntsville, AL 35806, USA.
Michelle D AmaralHudsonAlpha Institute for Biotechnology, Huntsville, AL 35806, USA.
Whitley V KelleyHudsonAlpha Institute for Biotechnology, Huntsville, AL 35806, USA.
Veronica GreveHudsonAlpha Institute for Biotechnology, Huntsville, AL 35806, USA.
David E GrayHudsonAlpha Institute for Biotechnology, Huntsville, AL 35806, USA.
Stephanie A FelkerHudsonAlpha Institute for Biotechnology, Huntsville, AL 35806, USA.ORCID 0000-0002-1809-1524
Hannah MeddaughDepartment of Genetics, Ochsner Health System, New Orleans, LA 70121, USA.
Ashley CannonDepartment of Genetics, University of Alabama at Birmingham, Birmingham, AL 35294, USA.ORCID 0000-0002-2319-208X
Amanda LuedeckeDepartment of Genetics, University of Alabama at Birmingham, Birmingham, AL 35294, USA.
Kelly E JacksonDivision of Genetics, Norton Children's Genetics Center, University of Louisville School of Medicine, Louisville, KY 40202, USA.
Laura G HendonDepartment of Pediatrics, University of Mississippi Medical Center, Jackson, MS 39216, USA.ORCID 0000-0003-0645-1315
Hillary M JananiNeonatal Intensive Care Unit, Woman's Hospital, Baton Rouge, LA 70817, USA.
Marla JohnstonDepartment of Pediatrics, Children's Hospital New Orleans, New Orleans, LA 70118, USA.
Lee Ann MerinDepartment of Pediatrics, University of Alabama at Birmingham, Birmingham, AL 35294, USA.
Sarah L DeansDepartment of Pediatrics, Norton Children's Research Institute, University of Louisville School of Medicine, Louisville, KY 40202, USA.
Carly TuuraDepartment of Pediatrics, University of Mississippi Medical Center, Jackson, MS 39216, USA.
Trent HughesDepartment of Pediatrics, University of Mississippi Medical Center, Jackson, MS 39216, USA.
Heather WilliamsDepartment of Pediatrics, University of Mississippi Medical Center, Jackson, MS 39216, USA.
Kelly LabordeNeonatal Intensive Care Unit, Woman's Hospital, Baton Rouge, LA 70817, USA.
Matthew B NeuHudsonAlpha Institute for Biotechnology, Huntsville, AL 35806, USA.
Jessica Patrick-EsteveDepartment of Pediatrics, Children's Hospital New Orleans, New Orleans, LA 70118, USA.
Anna C E HurstDepartment of Genetics, University of Alabama at Birmingham, Birmingham, AL 35294, USA.ORCID 0000-0002-9765-9703
Brian M KirmseDepartment of Pediatrics, University of Mississippi Medical Center, Jackson, MS 39216, USA.
Renate SavichPediatrics Neonatology Division, University of New Mexico Health Sciences Center, Albuquerque, NM 87106, USA.
Steven B SpedaleNeonatal Intensive Care Unit, Woman's Hospital, Baton Rouge, LA 70817, USA.
Sara J KnightDepartment of Internal Medicine, University of Utah, Salt Lake City, UT 84112, USA.ORCID 0000-0001-9452-9375
Gregory S BarshHudsonAlpha Institute for Biotechnology, Huntsville, AL 35806, USA.
Bruce R KorfDepartment of Genetics, University of Alabama at Birmingham, Birmingham, AL 35294, USA.
Gregory M CooperHudsonAlpha Institute for Biotechnology, Huntsville, AL 35806, USA.
Kyle B BrothersDepartment of Pediatrics, Norton Children's Research Institute, University of Louisville School of Medicine, Louisville, KY 40202, USA.
HudsonAlpha Institute for Biotechnology · USUniversity of Louisville · USUniversity of Alabama at Birmingham · USJackson Memorial Hospital · USWoman's Hospital · USChildren's Hospital of New Orleans · USOchsner Health System · USUniversity of New Mexico · USUniversity of Utah · USWashington University in St. Louis · US

Funding

South-seq: DNA sequencing for newborn nurseries in the SouthU01HG007301 · NHGRI · HUDSON-ALPHA INSTITUTE FOR BIOTECHNOLOGY · PI BARSH, GREGORY STEFAN, COOPER, GREGORY MICHAEL · 2017 to 2021
$11.9M
Analysis of Poison Exon Inclusion in Genes Associated with Neurodevelopmental Disorders and Autism Spectrum DisorderF31MH126628 · NIMH · HUDSON-ALPHA INSTITUTE FOR BIOTECHNOLOGY · PI FELKER, STEPHANIE ANN · 2021 to 2022
$86k
NHGRI NIH HHS U01 HG007301NIMH NIH HHS F31 MH126628
6 · The paper itself

Abstract

backgroundIt is critical to understand the wide-ranging clinical and non-clinical effects of genome sequencing (GS) for parents in the NICU context. We assessed parents' experiences with GS as a first-line diagnostic tool for infants with suspected genetic conditions in the NICU.

methodsParents of newborns (N = 62) suspected of having a genetic condition were recruited across five hospitals in the southeast United States as part of the SouthSeq study. Semi-structured interviews (N = 78) were conducted after parents received their child's sequencing result (positive, negative, or variants of unknown significance). Thematic analysis was performed on all interviews.

resultsKey themes included that (1) GS in infancy is important for reproductive decision making, preparing for the child's future care, ending the diagnostic odyssey, and sharing results with care providers; (2) the timing of disclosure was acceptable for most parents, although many reported the NICU environment was overwhelming; and (3) parents deny that receiving GS results during infancy exacerbated parent-infant bonding, and reported variable impact on their feelings of guilt.

conclusionParents reported that GS during the neonatal period was useful because it provided a "backbone" for their child's care. Parents did not consistently endorse negative impacts like interference with parent-infant bonding.

Indexed as

genome sequencingparental guiltparent–infant bondingtiming of disclosure of resultsutility

Identifiers

PMID37511639
PMCPMC10382030
OpenAlexW4381617238

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

Registered trials

None linked

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.