Genomic testing for human health and disease across the life cycle: Applications and ethical, legal, and social challenges

Gemma A. Bilkey, Belinda L. Burns, Emily P. Coles, Faye L. Bowman, John P. Beilby, Nicholas S. Pachter, Gareth Baynam, H. J. S. Dawkins, Kristen J. Nowak, Tarun S. Weeramanthri

Research output: Contribution to journalReview article

1 Citation (Scopus)

Abstract

The expanding use of genomic technologies encompasses all phases of life, from the embryo to the elderly, and even the posthumous phase. In this paper, we present the spectrum of genomic healthcare applications, and describe their scope and challenges at different stages of the life cycle. The integration of genomic technology into healthcare presents unique ethical issues that challenge traditional aspects of healthcare delivery. These challenges include the different definitions of utility as applied to genomic information; the particular characteristics of genetic data that influence how it might be protected, used and shared; and the difficulties applying existing models of informed consent, and how new consent models might be needed.

Original languageEnglish
Article number40
JournalFrontiers in Public Health
Volume7
Issue numberMAR
DOIs
Publication statusPublished - 11 Mar 2019

Fingerprint

Life Cycle Stages
Delivery of Health Care
Health
Technology
Informed Consent
Ethics
Embryonic Structures

Cite this

@article{68c48d6c56c54b73a332844cd3057967,
title = "Genomic testing for human health and disease across the life cycle: Applications and ethical, legal, and social challenges",
abstract = "The expanding use of genomic technologies encompasses all phases of life, from the embryo to the elderly, and even the posthumous phase. In this paper, we present the spectrum of genomic healthcare applications, and describe their scope and challenges at different stages of the life cycle. The integration of genomic technology into healthcare presents unique ethical issues that challenge traditional aspects of healthcare delivery. These challenges include the different definitions of utility as applied to genomic information; the particular characteristics of genetic data that influence how it might be protected, used and shared; and the difficulties applying existing models of informed consent, and how new consent models might be needed.",
keywords = "Clinical utility, Genetic disease, Genomic data, Genomic testing, Genomics, Healthcare, Molecular diagnostics, Public health",
author = "Bilkey, {Gemma A.} and Burns, {Belinda L.} and Coles, {Emily P.} and Bowman, {Faye L.} and Beilby, {John P.} and Pachter, {Nicholas S.} and Gareth Baynam and {S. Dawkins}, {H. J.} and Nowak, {Kristen J.} and Weeramanthri, {Tarun S.}",
year = "2019",
month = "3",
day = "11",
doi = "10.3389/fpubh.2019.00040",
language = "English",
volume = "7",
journal = "Frontiers in Public Health",
issn = "2296-2565",
publisher = "Frontiers Media SA",
number = "MAR",

}

Genomic testing for human health and disease across the life cycle : Applications and ethical, legal, and social challenges. / Bilkey, Gemma A.; Burns, Belinda L.; Coles, Emily P.; Bowman, Faye L.; Beilby, John P.; Pachter, Nicholas S.; Baynam, Gareth; S. Dawkins, H. J.; Nowak, Kristen J.; Weeramanthri, Tarun S.

In: Frontiers in Public Health, Vol. 7, No. MAR, 40, 11.03.2019.

Research output: Contribution to journalReview article

TY - JOUR

T1 - Genomic testing for human health and disease across the life cycle

T2 - Applications and ethical, legal, and social challenges

AU - Bilkey, Gemma A.

AU - Burns, Belinda L.

AU - Coles, Emily P.

AU - Bowman, Faye L.

AU - Beilby, John P.

AU - Pachter, Nicholas S.

AU - Baynam, Gareth

AU - S. Dawkins, H. J.

AU - Nowak, Kristen J.

AU - Weeramanthri, Tarun S.

PY - 2019/3/11

Y1 - 2019/3/11

N2 - The expanding use of genomic technologies encompasses all phases of life, from the embryo to the elderly, and even the posthumous phase. In this paper, we present the spectrum of genomic healthcare applications, and describe their scope and challenges at different stages of the life cycle. The integration of genomic technology into healthcare presents unique ethical issues that challenge traditional aspects of healthcare delivery. These challenges include the different definitions of utility as applied to genomic information; the particular characteristics of genetic data that influence how it might be protected, used and shared; and the difficulties applying existing models of informed consent, and how new consent models might be needed.

AB - The expanding use of genomic technologies encompasses all phases of life, from the embryo to the elderly, and even the posthumous phase. In this paper, we present the spectrum of genomic healthcare applications, and describe their scope and challenges at different stages of the life cycle. The integration of genomic technology into healthcare presents unique ethical issues that challenge traditional aspects of healthcare delivery. These challenges include the different definitions of utility as applied to genomic information; the particular characteristics of genetic data that influence how it might be protected, used and shared; and the difficulties applying existing models of informed consent, and how new consent models might be needed.

KW - Clinical utility

KW - Genetic disease

KW - Genomic data

KW - Genomic testing

KW - Genomics

KW - Healthcare

KW - Molecular diagnostics

KW - Public health

UR - http://www.scopus.com/inward/record.url?scp=85062937589&partnerID=8YFLogxK

U2 - 10.3389/fpubh.2019.00040

DO - 10.3389/fpubh.2019.00040

M3 - Review article

VL - 7

JO - Frontiers in Public Health

JF - Frontiers in Public Health

SN - 2296-2565

IS - MAR

M1 - 40

ER -