Danya F. Vears:
ORCID: https://orcid.org/0000-0002-6290-545X
Role: ConceptualizationRole: Formal analysisRole: MethodologyRole: Writing – original
draftRole: Writing – review & editing
Joel T. Minion: Role: ConceptualizationRole: Formal analysisRole: Project administrationRole: Writing
– review & editing
Stephanie J. Roberts:
ORCID: https://orcid.org/0000-0001-9289-0968
Role: ConceptualizationRole: Formal analysisRole: Project administrationRole: Writing
– review & editing
James Cummings: Role: Formal analysisRole: Writing – review & editing
Mavis Machirori: Role: Formal analysisRole: Writing – review & editing
Mwenza Blell:
ORCID: https://orcid.org/0000-0002-6794-3826
Role: Formal analysisRole: Writing – review & editing
Isabelle Budin-Ljøsne: Role: Formal analysisRole: Writing – review & editing
Lorraine Cowley:
ORCID: https://orcid.org/0000-0001-7789-5197
Role: Formal analysisRole: Writing – review & editing
Stephanie O. M. Dyke: Role: Formal analysisRole: Writing – review & editing
Clara Gaff: Role: Formal analysisRole: Writing – review & editing
Robert Green: Role: Formal analysisRole: Writing – review & editing
Alison Hall: Role: Formal analysisRole: Writing – review & editing
Amber L. Johns: Role: Formal analysisRole: Writing – review & editing
Bartha M. Knoppers: Role: ConceptualizationRole: Writing – review & editing
Stephanie Mulrine: Role: Formal analysisRole: Writing – review & editing
Christine Patch:
ORCID: https://orcid.org/0000-0002-4191-0663
Role: Formal analysisRole: Writing – review & editing
Eva Winkler: Role: Formal analysisRole: Writing – review & editing
Madeleine J. Murtagh: Role: ConceptualizationRole: Formal analysisRole: MethodologyRole: Writing – review
& editing
Ritesh G. Menezes: Role: Editor
Journal ID (nlm-ta): PLoS One
Journal ID (iso-abbrev): PLoS One
Journal ID (publisher-id): plos
Title:
PLoS ONE
Publisher:
Public Library of Science
(San Francisco, CA USA
)
ISSN
(Electronic):
1932-6203
Publication date
(Electronic):
8
November
2021
Publication date Collection: 2021
Volume: 16
Issue: 11
Electronic Location Identifier: e0258646
Affiliations
[1
]
Melbourne Law School, University of Melbourne, Carlton, Australia
[2
]
Murdoch Children’s Research Institute, The Royal Children’s Hospital, Parkville, Australia
[3
]
Center for Biomedical Ethics and Law, Department of Public Health and Primary Care,
KU Leuven, Leuven, Belgium
[4
]
Leuven Institute for Human Genetics and Society, Leuven, Belgium
[5
]
Policy, Ethics and Life Sciences (PEALS) Research Centre, Newcastle University, Newcastle,
United Kingdom
[6
]
Department of Community Health Sciences, O’Brien Institute for Public Health, University
of Calgary, Calgary, Canada
[7
]
School of Art, Media and American Studies, University of East Anglia, Norwich, United
Kingdom
[8
]
Ada Lovelace Institute, London, United Kingdom
[9
]
Department of Genetics and Bioinformatics, Norwegian Institute of Public Health, Oslo,
Norway
[10
]
Newcastle upon Tyne NHS Foundation Hospitals Trust, Northern Genetics Service, Centre
for Life, Newcastle, United Kingdom
[11
]
Population Health Sciences Institute, Newcastle University, Newcastle, United Kingdom
[12
]
McGill Centre for Integrative Neuroscience, Montreal Neurological Institute, Department
of Neurology & Neurosurgery, McGill University, Montreal, Canada
[13
]
Department of Paediatrics, Faculty of Medicine Dentistry & Health Sciences, The University
of Melbourne, Parkville, Australia
[14
]
Walter and Eliza Hall Institute of Medical Research, Parkville, Australia
[15
]
Harvard Medical School, Boston, Massachusetts, United States of America
[16
]
Mass General Brigham, Boston, Massachusetts, United States of America
[17
]
Broad Institute, Boston, Massachusetts, United States of America
[18
]
Ariadne Labs, Boston, Massachusetts, United States of America
[19
]
PHG Foundation, University of Cambridge, Cambridge, United Kingdom
[20
]
Cancer Division, Garvan Institute of Medical Research, Sydney, Australia
[21
]
International Cancer Genome Consortium, University of Glasgow, Glasgow, United Kingdom
[22
]
Centre of Genomics and Policy, McGill University, Montreal, Canada
[23
]
Northumbria University, Newcastle, United Kingdom
[24
]
Genomics England, Queen Mary University of London, London, United Kingdom
[25
]
Society and Ethics Research Group, Connecting Science, Wellcome Genome Campus, Cambridge,
United Kingdom
[26
]
National Center for Tumour Diseases (NCT), Section of Translational Medical Ethics,
University of Heidelberg, Heidelberg, Germany
[27
]
University of Glasgow, Glasgow, United Kingdom
[28
]
Newcastle University, Newcastle, United Kingdom
Imam Abdulrahman Bin Faisal University, SAUDI ARABIA
Author notes
Competing Interests: The authors have declared that no competing interests exist.
Author information
Article
Publisher ID:
PONE-D-21-02012
DOI: 10.1371/journal.pone.0258646
PMC ID: 8575249
PubMed ID: 34748551
SO-VID: d2375555-f561-45c7-9b57-59523b176f82
Copyright © © 2021 Vears et al
License:
This is an open access article distributed under the terms of the
Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided
the original author and source are credited.
Funded by:
Medical Research Future Fund
Award ID: 76749
Award Recipient
:
ORCID: https://orcid.org/0000-0002-6290-545X
Danya F. Vears
Funded by:
ESRC
Award ID: ES/S008349/1
Award Recipient
:
Madeleine J. Murtagh
Funded by:
Medical Research Council (GB)
Award ID: MR/N01104X/1 and MR/N01104X/2
Award Recipient
:
Madeleine J. Murtagh
Funded by:
funder-id http://dx.doi.org/10.13039/100004440, Wellcome Trust;
Award ID: 213422/Z/18/Z
Award Recipient
:
Madeleine J. Murtagh
Funded by:
EU Horizon 2020 programme
Award ID: 824989
Award Recipient
:
Madeleine J. Murtagh
Funded by:
Canada Research Chair in Law and Medicine
Award Recipient
:
Bartha M. Knoppers
Funded by:
Genome Quebec
Award Recipient
:
Bartha M. Knoppers
Funded by:
funder-id http://dx.doi.org/10.13039/100008762, Genome Canada;
Award Recipient
:
Bartha M. Knoppers
Funded by:
Canada Institute of Health Research
Award Recipient
:
Bartha M. Knoppers
Funded by:
funder-id http://dx.doi.org/10.13039/100000002, National Institutes of Health;
Award ID: HL143295, TR003201
Award Recipient
:
Robert Green
Funded by:
Franca Fund
Award Recipient
:
Robert Green
Funded by:
The Research Council of Norway
Award ID: 296162/F50
Award Recipient
:
Isabelle Budin-Ljøsne
Funded by:
Can-SHARE Connect
Funded by:
funder-id http://dx.doi.org/10.13039/100004440, Wellcome Trust;
Award ID: 206194
Award Recipient
:
ORCID: https://orcid.org/0000-0002-4191-0663
Christine Patch
Funded by:
funder-id http://dx.doi.org/10.13039/100004440, Wellcome Trust;
Award ID: 213422/Z/18/Z
Award Recipient
:
ORCID: https://orcid.org/0000-0002-6794-3826
Mwenza Blell
Funded by:
funder-id http://dx.doi.org/10.13039/100010269, Wellcome Trust;
Award ID: 213422/Z/18/Z
Award Recipient
:
James Cummings
Funded by:
funder-id http://dx.doi.org/10.13039/100010269, Wellcome Trust;
Award ID: 213422/Z/18/Z
Award Recipient
:
Joel T. Minion
Funded by:
funder-id http://dx.doi.org/10.13039/100010269, Wellcome Trust;
Award ID: 213422/Z/18/Z
Award Recipient
:
Mavis Machirori
Funded by:
funder-id http://dx.doi.org/10.13039/100010269, Wellcome Trust;
Award ID: 213422/Z/18/Z
Award Recipient
:
ORCID: https://orcid.org/0000-0001-9289-0968
Stephanie J. Roberts
Funded by:
Medical Research Council (GB)
Award ID: MR/N01104X/1 and MR/N01104X/2
Award Recipient
:
ORCID: https://orcid.org/0000-0002-6794-3826
Mwenza Blell
Funded by:
Medical Research Council (GB)
Award ID: MR/N01104X/1 and MR/N01104X/2
Award Recipient
:
James Cummings
Funded by:
Medical Research Council (GB)
Award ID: MR/N01104X/1 and MR/N01104X/2
Award Recipient
:
Joel T. Minion
Funded by:
Medical Research Council (GB)
Award ID: MR/N01104X/1 and MR/N01104X/2
Award Recipient
:
Mavis Machirori
Funded by:
Medical Research Council (GB)
Award ID: MR/N01104X/1 and MR/N01104X/2
Award Recipient
:
ORCID: https://orcid.org/0000-0001-9289-0968
Stephanie J. Roberts
Funded by:
ESRC
Award ID: ES/S008349/1
Award Recipient
:
ORCID: https://orcid.org/0000-0002-6794-3826
Mwenza Blell
Funded by:
ESRC
Award ID: ES/S008349/1
Award Recipient
:
James Cummings
Funded by:
ESRC
Award ID: ES/S008349/1
Award Recipient
:
Joel T. Minion
Funded by:
ESRC
Award ID: ES/S008349/1
Award Recipient
:
Mavis Machirori
Funded by:
ESRC
Award ID: ES/S008349/1
Award Recipient
:
ORCID: https://orcid.org/0000-0001-9289-0968
Stephanie J. Roberts
Funded by:
EU Horizon 2020 programme
Award ID: 824989
Award Recipient
:
ORCID: https://orcid.org/0000-0002-6794-3826
Mwenza Blell
Funded by:
EU Horizon 2020 programme
Award ID: 824989
Award Recipient
:
Joel T. Minion
Funded by:
EU Horizon 2020 programme
Award ID: 824989
Award Recipient
:
Mavis Machirori
This work was supported by the Australian Government through the Medical Research
Future Fund, as part of the Genomics Health Futures Mission (Grant number 76749 -
DV). We are grateful for funding support from ESRC, MRC and Wellcome Trust (METADAC,
Grant agreements MR/N01104X/1, ES/S008349/1, MR/N01104X/2, 213422/Z/18/Z - MJM, MB,
JC, JTM, MM, SJR; 206194 - CP) and the EU Horizon 2020 programme (EUCAN-connect, Grant
agreement ID: 824989 - MJM, MB, JTM, MM), and the Canada Research Chair in Law and
Medicine; Genome Quebec; Genome Canada (BMK); Canada Institute of Health Research
(BMK), the NIH (Grants HL143295, TR003201 - RG), the Franca Fund (RG) and Biobank
Norway funded by The Research Council of Norway <
https://www.forskningsradet.no/en/>, (grant number 296162/F50 – IBL). We acknowledge Can-SHARE Connect (2019-2020):
Supporting the Regulatory and Ethics Work Stream of the Global Alliance for Genomics
and Health_GA4GH.
Subject:
Research Article
Subject:
Biology and Life Sciences
Subject:
Genetics
Subject:
Human Genetics
Subject:
Biology and Life Sciences
Subject:
Genetics
Subject:
Genomics
Subject:
Medicine and Health Sciences
Subject:
Medical Humanities
Subject:
Medical Journals
Subject:
Biology and Life Sciences
Subject:
Genetics
Subject:
Genomics
Subject:
Genomic Medicine
Subject:
Medicine and Health Sciences
Subject:
Epidemiology
Subject:
Medical Risk Factors
Subject:
Cancer Risk Factors
Subject:
Medicine and Health Sciences
Subject:
Oncology
Subject:
Cancer Risk Factors
Subject:
Biology and Life Sciences
Subject:
Genetics
Subject:
Genetics of Disease
Subject:
Biology and Life Sciences
Subject:
Psychology
Subject:
Psychological Attitudes
Subject:
Social Sciences
Subject:
Psychology
Subject:
Psychological Attitudes
Subject:
Medicine and Health Sciences
Subject:
Mental Health and Psychiatry
Subject:
Dementia
Subject:
Alzheimer's Disease
Subject:
Medicine and Health Sciences
Subject:
Neurology
Subject:
Dementia
Subject:
Alzheimer's Disease
Subject:
Medicine and Health Sciences
Subject:
Medical Conditions
Subject:
Neurodegenerative Diseases
Subject:
Alzheimer's Disease
Subject:
Medicine and Health Sciences
Subject:
Neurology
Subject:
Neurodegenerative Diseases
Subject:
Alzheimer's Disease