Public engagement with genomic medicine: a summary of town hall discussions

Engaging with the public for their input about genomic medicine is critical before it is implemented into routine healthcare practice. In order to inform discussion and planning for the introduction of genome sequencing into clinical care in an Eastern Canadian province, we implemented a program of...

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Published in:Journal of Community Genetics
Main Authors: Etchegary, Holly, Winsor, Mercy, Power, Angela, Simmonds, Charlene
Format: Text
Language:English
Published: Springer Berlin Heidelberg 2020
Subjects:
Online Access:http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7846649/
http://www.ncbi.nlm.nih.gov/pubmed/32865775
https://doi.org/10.1007/s12687-020-00485-1
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spelling ftpubmed:oai:pubmedcentral.nih.gov:7846649 2023-05-15T17:22:14+02:00 Public engagement with genomic medicine: a summary of town hall discussions Etchegary, Holly Winsor, Mercy Power, Angela Simmonds, Charlene 2020-08-31 http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7846649/ http://www.ncbi.nlm.nih.gov/pubmed/32865775 https://doi.org/10.1007/s12687-020-00485-1 en eng Springer Berlin Heidelberg http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7846649/ http://www.ncbi.nlm.nih.gov/pubmed/32865775 http://dx.doi.org/10.1007/s12687-020-00485-1 © Springer-Verlag GmbH Germany, part of Springer Nature 2020 J Community Genet Original Article Text 2020 ftpubmed https://doi.org/10.1007/s12687-020-00485-1 2021-02-07T01:45:52Z Engaging with the public for their input about genomic medicine is critical before it is implemented into routine healthcare practice. In order to inform discussion and planning for the introduction of genome sequencing into clinical care in an Eastern Canadian province, we implemented a program of public engagement activities. Here, we report a qualitative summary of two town hall discussions utilizing a hybrid information–consultation approach with 20 residents of the province of Newfoundland and Labrador, Canada. Discussion revealed largely positive attitudes towards genomic medicine; however, critical reflection around informed consent models, the return of sequencing findings, and access to qualified healthcare professionals revealed numerous public concerns. Public support will be important to realize the potential benefits of genomics and precision medicine to health outcomes. Our findings highlight public concerns that must be addressed in educational and informed consent documents related to sequencing. Town hall attendees endorsed ongoing public education and awareness-building initiatives which could help foster transparency and trust as genomics is integrated into healthcare systems. Text Newfoundland PubMed Central (PMC) Canada Newfoundland Journal of Community Genetics 12 1 27 35
institution Open Polar
collection PubMed Central (PMC)
op_collection_id ftpubmed
language English
topic Original Article
spellingShingle Original Article
Etchegary, Holly
Winsor, Mercy
Power, Angela
Simmonds, Charlene
Public engagement with genomic medicine: a summary of town hall discussions
topic_facet Original Article
description Engaging with the public for their input about genomic medicine is critical before it is implemented into routine healthcare practice. In order to inform discussion and planning for the introduction of genome sequencing into clinical care in an Eastern Canadian province, we implemented a program of public engagement activities. Here, we report a qualitative summary of two town hall discussions utilizing a hybrid information–consultation approach with 20 residents of the province of Newfoundland and Labrador, Canada. Discussion revealed largely positive attitudes towards genomic medicine; however, critical reflection around informed consent models, the return of sequencing findings, and access to qualified healthcare professionals revealed numerous public concerns. Public support will be important to realize the potential benefits of genomics and precision medicine to health outcomes. Our findings highlight public concerns that must be addressed in educational and informed consent documents related to sequencing. Town hall attendees endorsed ongoing public education and awareness-building initiatives which could help foster transparency and trust as genomics is integrated into healthcare systems.
format Text
author Etchegary, Holly
Winsor, Mercy
Power, Angela
Simmonds, Charlene
author_facet Etchegary, Holly
Winsor, Mercy
Power, Angela
Simmonds, Charlene
author_sort Etchegary, Holly
title Public engagement with genomic medicine: a summary of town hall discussions
title_short Public engagement with genomic medicine: a summary of town hall discussions
title_full Public engagement with genomic medicine: a summary of town hall discussions
title_fullStr Public engagement with genomic medicine: a summary of town hall discussions
title_full_unstemmed Public engagement with genomic medicine: a summary of town hall discussions
title_sort public engagement with genomic medicine: a summary of town hall discussions
publisher Springer Berlin Heidelberg
publishDate 2020
url http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7846649/
http://www.ncbi.nlm.nih.gov/pubmed/32865775
https://doi.org/10.1007/s12687-020-00485-1
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op_source J Community Genet
op_relation http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7846649/
http://www.ncbi.nlm.nih.gov/pubmed/32865775
http://dx.doi.org/10.1007/s12687-020-00485-1
op_rights © Springer-Verlag GmbH Germany, part of Springer Nature 2020
op_doi https://doi.org/10.1007/s12687-020-00485-1
container_title Journal of Community Genetics
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