The Burden and Benefits of Knowledge: Ethical Considerations Surrounding Population-Based Newborn Genome Screening for Hearing

Recent advances in genomic sequencing technologies have expanded practitioners’ utilization of genetic information in a timely and efficient manner for an accurate diagnosis. With an ever-increasing resource of genomic data from progress in the interpretation of genome sequences, clinicians face dec...

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Main Authors: Calli O. Mitchell, Greysha Rivera-Cruz, Matthew Hoi Kin Chau, Zirui Dong, Kwong Wai Choy, Jun Shen, Sami Amr, Anne B. S. Giersch, Cynthia C. Morton
Format: Article
Language:English
Published: MDPI AG 2022-05-01
Series:International Journal of Neonatal Screening
Subjects:
Online Access:https://www.mdpi.com/2409-515X/8/2/36
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author Calli O. Mitchell
Greysha Rivera-Cruz
Matthew Hoi Kin Chau
Zirui Dong
Kwong Wai Choy
Jun Shen
Sami Amr
Anne B. S. Giersch
Cynthia C. Morton
author_facet Calli O. Mitchell
Greysha Rivera-Cruz
Matthew Hoi Kin Chau
Zirui Dong
Kwong Wai Choy
Jun Shen
Sami Amr
Anne B. S. Giersch
Cynthia C. Morton
author_sort Calli O. Mitchell
collection DOAJ
description Recent advances in genomic sequencing technologies have expanded practitioners’ utilization of genetic information in a timely and efficient manner for an accurate diagnosis. With an ever-increasing resource of genomic data from progress in the interpretation of genome sequences, clinicians face decisions about how and when genomic information should be presented to families, and at what potential expense. Presently, there is limited knowledge or experience in establishing the value of implementing genome sequencing into newborn screening. Herein we provide insight into the complexities and the burden and benefits of knowledge resulting from genome sequencing of newborns.
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spelling doaj.art-507ffb223c5746caba03c4aec6ea2a0c2023-11-23T17:08:38ZengMDPI AGInternational Journal of Neonatal Screening2409-515X2022-05-01823610.3390/ijns8020036The Burden and Benefits of Knowledge: Ethical Considerations Surrounding Population-Based Newborn Genome Screening for HearingCalli O. Mitchell0Greysha Rivera-Cruz1Matthew Hoi Kin Chau2Zirui Dong3Kwong Wai Choy4Jun Shen5Sami Amr6Anne B. S. Giersch7Cynthia C. Morton8Department of Obstetrics and Gynecology, Brigham and Women’s Hospital, Boston, MA 02115, USADepartment of Pediatrics, Division of Genetics and Genomics, Boston Children’s Hospital, Boston, MA 02115, USADepartment of Obstetrics & Gynaecology, The Chinese University of Hong Kong, Hong Kong, ChinaDepartment of Obstetrics & Gynaecology, The Chinese University of Hong Kong, Hong Kong, ChinaDepartment of Obstetrics & Gynaecology, The Chinese University of Hong Kong, Hong Kong, ChinaDepartment of Pathology, Brigham and Women’s Hospital, Boston, MA 02115, USADepartment of Pathology, Brigham and Women’s Hospital, Boston, MA 02115, USADepartment of Pathology, Brigham and Women’s Hospital, Boston, MA 02115, USADepartment of Obstetrics and Gynecology, Brigham and Women’s Hospital, Boston, MA 02115, USARecent advances in genomic sequencing technologies have expanded practitioners’ utilization of genetic information in a timely and efficient manner for an accurate diagnosis. With an ever-increasing resource of genomic data from progress in the interpretation of genome sequences, clinicians face decisions about how and when genomic information should be presented to families, and at what potential expense. Presently, there is limited knowledge or experience in establishing the value of implementing genome sequencing into newborn screening. Herein we provide insight into the complexities and the burden and benefits of knowledge resulting from genome sequencing of newborns.https://www.mdpi.com/2409-515X/8/2/36genome sequencingnewborn hearing screeningnewborn screeningnewborn genome sequencingincidental findingssecondary findings
spellingShingle Calli O. Mitchell
Greysha Rivera-Cruz
Matthew Hoi Kin Chau
Zirui Dong
Kwong Wai Choy
Jun Shen
Sami Amr
Anne B. S. Giersch
Cynthia C. Morton
The Burden and Benefits of Knowledge: Ethical Considerations Surrounding Population-Based Newborn Genome Screening for Hearing
International Journal of Neonatal Screening
genome sequencing
newborn hearing screening
newborn screening
newborn genome sequencing
incidental findings
secondary findings
title The Burden and Benefits of Knowledge: Ethical Considerations Surrounding Population-Based Newborn Genome Screening for Hearing
title_full The Burden and Benefits of Knowledge: Ethical Considerations Surrounding Population-Based Newborn Genome Screening for Hearing
title_fullStr The Burden and Benefits of Knowledge: Ethical Considerations Surrounding Population-Based Newborn Genome Screening for Hearing
title_full_unstemmed The Burden and Benefits of Knowledge: Ethical Considerations Surrounding Population-Based Newborn Genome Screening for Hearing
title_short The Burden and Benefits of Knowledge: Ethical Considerations Surrounding Population-Based Newborn Genome Screening for Hearing
title_sort burden and benefits of knowledge ethical considerations surrounding population based newborn genome screening for hearing
topic genome sequencing
newborn hearing screening
newborn screening
newborn genome sequencing
incidental findings
secondary findings
url https://www.mdpi.com/2409-515X/8/2/36
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