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Open Access
Peer-reviewed
Research Article
Return of individual research results from genomic research: A systematic review of stakeholder perspectives
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Danya F. Vears ,
Roles Conceptualization, Formal analysis, Methodology, Writing – original draft, Writing – review & editing
* E-mail: danya.vears@mcri.edu.au
Affiliations Melbourne Law School, University of Melbourne, Carlton, Australia, Murdoch Children’s Research Institute, The Royal Children’s Hospital, Parkville, Australia, Center for Biomedical Ethics and Law, Department of Public Health and Primary Care, KU Leuven, Leuven, Belgium, Leuven Institute for Human Genetics and Society, Leuven, Belgium
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Joel T. Minion,
Roles Conceptualization, Formal analysis, Project administration, Writing – review & editing
Affiliations Policy, Ethics and Life Sciences (PEALS) Research Centre, Newcastle University, Newcastle, United Kingdom, Department of Community Health Sciences, O’Brien Institute for Public Health, University of Calgary, Calgary, Canada
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Stephanie J. Roberts,
Roles Conceptualization, Formal analysis, Project administration, Writing – review & editing
Affiliation Policy, Ethics and Life Sciences (PEALS) Research Centre, Newcastle University, Newcastle, United Kingdom
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James Cummings,
Roles Formal analysis, Writing – review & editing
Affiliation School of Art, Media and American Studies, University of East Anglia, Norwich, United Kingdom
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Mavis Machirori,
Roles Formal analysis, Writing – review & editing
Affiliations Policy, Ethics and Life Sciences (PEALS) Research Centre, Newcastle University, Newcastle, United Kingdom, Ada Lovelace Institute, London, United Kingdom
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Mwenza Blell,
Roles Formal analysis, Writing – review & editing
Affiliation Policy, Ethics and Life Sciences (PEALS) Research Centre, Newcastle University, Newcastle, United Kingdom
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Isabelle Budin-Ljøsne,
Roles Formal analysis, Writing – review & editing
Affiliation Department of Genetics and Bioinformatics, Norwegian Institute of Public Health, Oslo, Norway
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Lorraine Cowley,
Roles Formal analysis, Writing – review & editing
Affiliations Newcastle upon Tyne NHS Foundation Hospitals Trust, Northern Genetics Service, Centre for Life, Newcastle, United Kingdom, Population Health Sciences Institute, Newcastle University, Newcastle, United Kingdom
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Stephanie O. M. Dyke,
Roles Formal analysis, Writing – review & editing
Affiliation McGill Centre for Integrative Neuroscience, Montreal Neurological Institute, Department of Neurology & Neurosurgery, McGill University, Montreal, Canada
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Clara Gaff,
Roles Formal analysis, Writing – review & editing
Affiliations Murdoch Children’s Research Institute, The Royal Children’s Hospital, Parkville, Australia, Department of Paediatrics, Faculty of Medicine Dentistry & Health Sciences, The University of Melbourne, Parkville, Australia, Walter and Eliza Hall Institute of Medical Research, Parkville, Australia
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Robert Green,
Roles Formal analysis, Writing – review & editing
Affiliations Harvard Medical School, Boston, Massachusetts, United States of America, Mass General Brigham, Boston, Massachusetts, United States of America, Broad Institute, Boston, Massachusetts, United States of America, Ariadne Labs, Boston, Massachusetts, United States of America
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Alison Hall,
Roles Formal analysis, Writing – review & editing
Affiliation PHG Foundation, University of Cambridge, Cambridge, United Kingdom
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Amber L. Johns,
Roles Formal analysis, Writing – review & editing
Affiliations Cancer Division, Garvan Institute of Medical Research, Sydney, Australia, International Cancer Genome Consortium, University of Glasgow, Glasgow, United Kingdom
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Bartha M. Knoppers,
Roles Conceptualization, Writing – review & editing
Affiliation Centre of Genomics and Policy, McGill University, Montreal, Canada
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Stephanie Mulrine,
Roles Formal analysis, Writing – review & editing
Affiliation Northumbria University, Newcastle, United Kingdom
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Christine Patch,
Roles Formal analysis, Writing – review & editing
Affiliations Genomics England, Queen Mary University of London, London, United Kingdom, Society and Ethics Research Group, Connecting Science, Wellcome Genome Campus, Cambridge, United Kingdom
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Eva Winkler,
Roles Formal analysis, Writing – review & editing
Affiliation National Center for Tumour Diseases (NCT), Section of Translational Medical Ethics, University of Heidelberg, Heidelberg, Germany
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Madeleine J. Murtagh
Roles Conceptualization, Formal analysis, Methodology, Writing – review & editing
Affiliations University of Glasgow, Glasgow, United Kingdom, Newcastle University, Newcastle, United Kingdom
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Return of individual research results from genomic research: A systematic review of stakeholder perspectives
- Danya F. Vears,
- Joel T. Minion,
- Stephanie J. Roberts,
- James Cummings,
- Mavis Machirori,
- Mwenza Blell,
- Isabelle Budin-Ljøsne,
- Lorraine Cowley,
- Stephanie O. M. Dyke,
- Clara Gaff
- Published: November 8, 2021
- https://doi.org/10.1371/journal.pone.0258646