Journal of Personalized Medicine (Jun 2023)
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,
- Donald R. Latner,
- Susan M. Hiatt,
- Michelle D. Amaral,
- Whitley V. Kelley,
- Veronica Greve,
- David E. Gray,
- Stephanie A. Felker,
- Hannah Meddaugh,
- Ashley Cannon,
- Amanda Luedecke,
- Kelly E. Jackson,
- Laura G. Hendon,
- Hillary M. Janani,
- Marla Johnston,
- Lee Ann Merin,
- Sarah L. Deans,
- Carly Tuura,
- Trent Hughes,
- Heather Williams,
- Kelly Laborde,
- Matthew B. Neu,
- Jessica Patrick-Esteve,
- Anna C. E. Hurst,
- Brian M. Kirmse,
- Renate Savich,
- Steven B. Spedale,
- Sara J. Knight,
- Gregory S. Barsh,
- Bruce R. Korf,
- Gregory M. Cooper,
- Kyle B. Brothers
Affiliations
- Amy A. Lemke
- Department of Pediatrics, Norton Children’s Research Institute, University of Louisville School of Medicine, Louisville, KY 40202, USA
- Michelle L. Thompson
- HudsonAlpha Institute for Biotechnology, Huntsville, AL 35806, USA
- Emily C. Gimpel
- Department of Pediatrics, Norton Children’s Research Institute, University of Louisville School of Medicine, Louisville, KY 40202, USA
- Katelyn C. McNamara
- Department of Pediatrics, Norton Children’s Research Institute, University of Louisville School of Medicine, Louisville, KY 40202, USA
- Carla A. Rich
- Department of Pediatrics, Norton Children’s Research Institute, University of Louisville School of Medicine, Louisville, KY 40202, USA
- Candice R. Finnila
- HudsonAlpha Institute for Biotechnology, Huntsville, AL 35806, USA
- Meagan E. Cochran
- HudsonAlpha Institute for Biotechnology, Huntsville, AL 35806, USA
- James M. J. Lawlor
- HudsonAlpha Institute for Biotechnology, Huntsville, AL 35806, USA
- Kelly M. East
- HudsonAlpha Institute for Biotechnology, Huntsville, AL 35806, USA
- Kevin M. Bowling
- Department of Pathology and Immunology, Washington University School of Medicine, St. Louis, MO 63110, USA
- Donald R. Latner
- HudsonAlpha Institute for Biotechnology, Huntsville, AL 35806, USA
- Susan M. Hiatt
- HudsonAlpha Institute for Biotechnology, Huntsville, AL 35806, USA
- Michelle D. Amaral
- HudsonAlpha Institute for Biotechnology, Huntsville, AL 35806, USA
- Whitley V. Kelley
- HudsonAlpha Institute for Biotechnology, Huntsville, AL 35806, USA
- Veronica Greve
- HudsonAlpha Institute for Biotechnology, Huntsville, AL 35806, USA
- David E. Gray
- HudsonAlpha Institute for Biotechnology, Huntsville, AL 35806, USA
- Stephanie A. Felker
- HudsonAlpha Institute for Biotechnology, Huntsville, AL 35806, USA
- Hannah Meddaugh
- Department of Genetics, Ochsner Health System, New Orleans, LA 70121, USA
- Ashley Cannon
- Department of Genetics, University of Alabama at Birmingham, Birmingham, AL 35294, USA
- Amanda Luedecke
- Department of Genetics, University of Alabama at Birmingham, Birmingham, AL 35294, USA
- Kelly E. Jackson
- Division of Genetics, Norton Children’s Genetics Center, University of Louisville School of Medicine, Louisville, KY 40202, USA
- Laura G. Hendon
- Department of Pediatrics, University of Mississippi Medical Center, Jackson, MS 39216, USA
- Hillary M. Janani
- Neonatal Intensive Care Unit, Woman’s Hospital, Baton Rouge, LA 70817, USA
- Marla Johnston
- Department of Pediatrics, Children’s Hospital New Orleans, New Orleans, LA 70118, USA
- Lee Ann Merin
- Department of Pediatrics, University of Alabama at Birmingham, Birmingham, AL 35294, USA
- Sarah L. Deans
- Department of Pediatrics, Norton Children’s Research Institute, University of Louisville School of Medicine, Louisville, KY 40202, USA
- Carly Tuura
- Department of Pediatrics, University of Mississippi Medical Center, Jackson, MS 39216, USA
- Trent Hughes
- Department of Pediatrics, University of Mississippi Medical Center, Jackson, MS 39216, USA
- Heather Williams
- Department of Pediatrics, University of Mississippi Medical Center, Jackson, MS 39216, USA
- Kelly Laborde
- Neonatal Intensive Care Unit, Woman’s Hospital, Baton Rouge, LA 70817, USA
- Matthew B. Neu
- HudsonAlpha Institute for Biotechnology, Huntsville, AL 35806, USA
- Jessica Patrick-Esteve
- Department of Pediatrics, Children’s Hospital New Orleans, New Orleans, LA 70118, USA
- Anna C. E. Hurst
- Department of Genetics, University of Alabama at Birmingham, Birmingham, AL 35294, USA
- Brian M. Kirmse
- Department of Pediatrics, University of Mississippi Medical Center, Jackson, MS 39216, USA
- Renate Savich
- Pediatrics Neonatology Division, University of New Mexico Health Sciences Center, Albuquerque, NM 87106, USA
- Steven B. Spedale
- Neonatal Intensive Care Unit, Woman’s Hospital, Baton Rouge, LA 70817, USA
- Sara J. Knight
- Department of Internal Medicine, University of Utah, Salt Lake City, UT 84112, USA
- Gregory S. Barsh
- HudsonAlpha Institute for Biotechnology, Huntsville, AL 35806, USA
- Bruce R. Korf
- Department of Genetics, University of Alabama at Birmingham, Birmingham, AL 35294, USA
- Gregory M. Cooper
- HudsonAlpha Institute for Biotechnology, Huntsville, AL 35806, USA
- Kyle B. Brothers
- Department of Pediatrics, Norton Children’s Research Institute, University of Louisville School of Medicine, Louisville, KY 40202, USA
- DOI
- https://doi.org/10.3390/jpm13071026
- Journal volume & issue
-
Vol. 13,
no. 7
p. 1026
Abstract
Background: It 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. Methods: Parents 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. Results: Key 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. Conclusion: Parents 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.
Keywords
