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

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

doi:10.3390/ijns8020036

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

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

Division of Psychology Communication and Human Neuroscience (L5)

Research output: Contribution to journal › Article › peer-review

Abstract

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.

Original language	English
Pages (from-to)	36
Journal	International Journal of Neonatal Screening
Volume	8
Issue number	2
DOIs	https://doi.org/10.3390/ijns8020036
Publication status	Published - 27 May 2022

Access to Document

10.3390/ijns8020036Licence: CC BY

Manchester Centre for Audiology and Deafness (ManCAD)
Munro, K. (PI), Millman, R. (PI), Lamb, W. (Support team), Dawes, P. (PI), Plack, C. (PI), Stone, M. (PI), Kluk-De Kort, K. (PI), Moore, D. (PI), Morton, C. (PI), Prendergast, G. (PI), Couth, S. (PI), Schlittenlacher, J. (PI), Chilton, H. (PI), Visram, A. (Researcher), Dillon, H. (PI), Guest, H. (Researcher), Heinrich, A. (PI), Jackson, I. (Researcher), Littlejohn, J. (Researcher), Jones, L. (PI), Lough, M. (Researcher), Morgan, R. (Researcher), Perugia, E. (Researcher), Roughley, A. (Researcher), Whiston, H. (Researcher), Wright, C. (Support team), Saunders, G. (PI), Kelly, C. (PI), Cross, H. (Researcher), Loughran, M. (Researcher), Hoseinabadi, R. (PI) & Vercammen, C. (PI)
Project: Research

Cite this

@article{ae480885fc784c4cb191a7a13f636df6,

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

abstract = "Recent advances in genomic sequencing technologies have expanded practitioners{\textquoteright} 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.",

author = "Mitchell, {Calli O.} and Greysha Rivera-cruz and Chau, {Matthew Hoi Kin} and Zirui Dong and Choy, {Kwong Wai} and Jun Shen and Sami Amr and Giersch, {Anne B. S.} and Morton, {Cynthia C.}",

year = "2022",

month = may,

day = "27",

doi = "10.3390/ijns8020036",

language = "English",

volume = "8",

pages = "36",

journal = "International Journal of Neonatal Screening",

issn = "2409-515X",

publisher = "MDPI",

number = "2",

}

TY - JOUR

T1 - The Burden and Benefits of Knowledge: Ethical Considerations Surrounding Population-Based Newborn Genome Screening for Hearing

AU - Mitchell, Calli O.

AU - Rivera-cruz, Greysha

AU - Chau, Matthew Hoi Kin

AU - Dong, Zirui

AU - Choy, Kwong Wai

AU - Shen, Jun

AU - Amr, Sami

AU - Giersch, Anne B. S.

AU - Morton, Cynthia C.

PY - 2022/5/27

Y1 - 2022/5/27

N2 - 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.

AB - 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.

U2 - 10.3390/ijns8020036

DO - 10.3390/ijns8020036

M3 - Article

SN - 2409-515X

VL - 8

SP - 36

JO - International Journal of Neonatal Screening

JF - International Journal of Neonatal Screening

IS - 2

ER -

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

Abstract

Access to Document

Fingerprint

Projects

Manchester Centre for Audiology and Deafness (ManCAD)

Cite this